Living with Invasive Ductal Carcinoma Nos
Today was the day of the pathology results from last week’s biopsy for breast cancer. Seems I have Invasive Ductal Carcinoma Nos (IDC Nos). This is the most common form of breast cancer with 70-80% of those diagnosed with breast cancer having this IDC Nos.
My pathology report read:
Both biopsy cores show diffuse involvement by an invasive carcinoma composed of infiltrative thickened cords, single files, and focal irregular neoplastic tubules. The surrounding stroma is desmoplastic and sclerotic in areas with mucin ground substance deposition. The tumor cells have mild to moderately pleomorphic, hyperchromatic nuclei and distinct nucleoli. Mitotic figures are not conspicuous. Lymphovascular invasion is not seen. There is additional ductal in situ carcinoma with focal necrosis, mild nuclear pleomorphism and solid growth pattern is seen focally. In conclusion: Invasive ductal carcinoma NOS type (grade 2 features in this biopsy) with focal, intermediate grade ductal carcinoma in situ.
There is Invasive Ductal Carcinoma (IDC) and Invasive Ductal Carcinoma Nos (IDC Nos) and these have different types of prognosis.
IDC has a good prognosis, generally around 85-95% ten year survival rate.
IDC Nos generally has an intermediate prognosis up ten year survival rate depending in part on which of the 6 subtypes. These rates range from 48%-85% so too wide to postulate.
These subtypes include include tubular, mucinous, medullary, papillary, cribriform, comedo. From my pathology report, and not being a doctor, appear to have some features of tubular, mucinous and comedo which may fit what is called a mixed subtype. The mixed type can make things more complicated.
Survival rate can depend on many other things, such as size of the tumor, how invasive it has become, whether it has got into bone etc. Mine is around 2.2cm located in the upper quadrant of the breast, around ’12 o’clock’ in breast terms (UPDATE: upon mastectomy it was found to actually be a 3cm). It is sitting back toward the chest wall but we reasonable hope it hasn’t got into the muscle there and even if it has, they’ll cut it out if it has.
Mine has features of both Invasive Ductal Carcinoma and Ductal Carcinoma in Situ… in other words mine had been pre-cancerous but broke out of the in-Situ status. So that means we got there early. Other good signs are so far no lymph or vascular invasion is seen. So cutting it out then zapping the breast cells with radiation to warn off other pre-cancerous cells lurking then we discuss the chemo thing. Until we get to chemo I don’t have to worry too much about the immune deficiency issues re low white cells etc. I’ll cross that bridge when I come to it. And because of the high family cancer history we’re exploring the genetics side to consider how that effects things too.
In other words, we’re on the case.
I have a great sense of humor, a fairly unstoppable soul, strong support, good awareness of my side of the treatment plan and a good, positive medical team.
I’ll have a lumpectomy next Thursday. Then they’ll examine what they took out, check they got all the margins, check the lymph nodes yet again. Two weeks after that we’ll look at radiation to take care of any rogue cells that may be about to break out from ‘in Situ’ into ‘invasive’. Then we’ll cross the chemo bridge as and when and if we need to. Once the genetics are established, if there’s a genetics issue at work, I’ll consider mastectomy if I had to reduce those risks of recurrence. Then when I’m well, I’d celebrate with a mastectomy tatoo. I’m up for the journey.
UPDATE:
Well, what a journey it was.
I fully researched my type of start up cells. They were comedocarcinoma cells which then differentiated into more invasive types of cells. Only 5% of breast cancers start with comedo cells.
Most breast cancers start with cells that increase only 0.5cm a year, so easy to catch, have only a 30% malignancy rate so often won’t become invasive and have a low return rate (around 5% return rate). Comedo cells aren’t like that. They can grow very fast and the tumor mine developed into turned out to be a 3cm tumor that developed in around 3 months. Comedos have 100% malignancy rate and a 50% return rate to the same breast and up to 38% return rate to the other breast. So once I understood this, I knew that lumpectomy was probably not the best route for me, even though doctors recommend it to try and help women save their breasts, their looks, their self esteem. So I looked at enough pictures of Kiera Knightly looking great flat chested, knew I’d ultimately ask for my other one to be removed too, and on the day of my lumpectomy, 5 min before getting my op, I asked for mastectomy and signed away my breast.
I asked, would this then get me out of radiotherapy and chemo? I was told, yes, it would. Without breast tissue, there’d be nothing to radiate and given my tumor was under 3cm then chemo wouldn’t be necessary provided I had a negative lymph node result.
After my mastectomy I was told the tumor wasn’t a 2.3cm after all, it was a 3cm. They took out the Sentinel Node and found it was ‘reactive’ but benign, in other words it was reacting to something (probably to cancer cells) and was in a process of changing but wasn’t cancerous. So my lymph node result was technically negative. Nevertheless, even with a negative lymph node result, once a tumor is 3cm or over I learned I was automatically off to chemotherapy.
I was GUTTED. I was so anxious, this was not what I’d bargained for. I was told that based on my particular type of cells, tumor size, age etc that without chemo I’d have a 25% chance of being dead from secondaries in the next ten years. I cheered myself up looking at pictures of Sinead O’Connor looking great with a bald head, went home and proactively shaved my hair off before chemo could have it all fall out, then had an art sale to help us raise $4000 to have the tumor sent to the US for an (expensive!!!) Oncotype GX test where it was checked based on 20 of its features and got the same feedback, 25% chance of being dead from secondaries if I didn’t do chemo. With chemo this would be halved, still a 1 in 10 chance but better than a 1 in 4.
I coped with chemo. Armed with tumor humor, yoga, a fab oncologist supportive of my use of natural therapies I intended to support myself with through chemo and as equipped as I could be for the battle, I did 4 chemo sessions, at 3 week intervals of very hard hitting, often debilitating heavy drugs. I had a plethora of known side effects, common and rare and I’m out the other side, bald but vibrant, fatigued but empowered with my new expiry date to show for it.
warmly,
Donna
Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net
I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.
Wow… So proud of you Donna… Sounds like you have a handle on what’s going on! Keep strong, learn a good relaxation technique and hang on for that ride! Cool idea about the tattoo! Go girl! Love, support and prayers for you all the way. Xxxxxx
Inspirational as always, Donna. Hope the next appointment brings good news and that you are able to cope with the treatment really well. Your are in our thoughts, and sending well wishes your way. xxx
You have explored a lot about yourself through writing and given us in the outside world a lot of valuable information and insight through writing. I can see you are tackling your new challenge in the same way. It is a powerful tool for you and for others. Thank you for all you’ve shared and keep sharing. Keep strong. Wishing you a speedy recovery. X
Best wishes Donna for this journey, sharing this on your blog is such a wonderful way to continue educating and inspiring others.
Sending you positive energy!
Hope it goes well Donna. Your strength and honesty is inspirational..
Our family wish you all the best Donna. Like so many other parents, I am one of those who so look forward to meeting you. With reading your blog and hearing from others about you, I am sure you will come through this and we will endeavour to meet eventually. I look forward to that day and once again wish you a speedy recovery. You are an inspiration to all of us.
We’re thinking of you in Boston. News could be better, but could be worse – not that that is ever much of a consolation. You’re writing about one breast – I hope that means the other breast is clear.
All the very best for next Thursday
Love to you both from us both,
Chris and Rosie
yeah, the right one turned out to be ok, just a cyst.
the left one is not ok, but we’ll fix it!
good job donna,my case is same as yours,but you know you inspired me so much and you made me strong for what you have shared.im so hopeful that GOD makes me strong like you…..Love you Donna…GOD Bless You…
Nice to meet you Helen, so is yours also IDC Nos?
how are you going?
feel free to email me bookings@donnawilliams.net
I too was just diagnosed with ductal invasive carcinoma. Got the call less than 9 hours ago. Still in shock. Have a Dr. appt. later today. Feels overwhelming but I have a fighting spirit and the enemy in my body will be going to war. Just don’t know what the weapons are yet. I have grandchildren to see and grow and horses to ride and a wonderful husband of almost 34 years to live the rest of our lives. I’m only 51 and I have a lot of life to live. I have my big girl panties on now and they will stay on!
Hi Terri, my dx was on 8th July, confirmed after biopsies on 20th July. Hang in there and email me if you wish bookings@donnawilliams.net if you wish to share the journey with a fellow newbie.
I wish you good luck on your journey i have a story to share once my mother told me that the doctors had told her to keep a close eye on my dark freckle on my shoulder since my birth to make sure that the freckle wouldn’t turn into cancer at the time it scared me and I tried to take the freckle off with my fingers because i didnt want to get cancer but now i wonder if my mother made up that story or if that dark bumpy freckle could actually turn into cancer
Kaitlin, a quick visit to the doc once a year will remind you which freckles are and are not ever going to be a problem
Oh, Donna!
I am SO distressed that you have to battle breast cancer…and so heartened by your assurance that you have “a great sense of humor, a fairly unstoppable soul, strong support, good awareness of my side of the treatment plan and a good, positive medical team”…so true. So YOU. I will definitely check out the Skype connection. I have been deeply involved in breast cancer treatments with several friends, and feel very optimistic about your diagnosis. Glad, too, that you have confidence in your medical team. I love you and miss you and send you a huge cyber-hug. More, and soon!
MK.
Hi Lovely MK, I’m not too worried, weeds are very hard to knock off
We’re damned near the walking dead… flat out on the mat, down for the count, then back up more times than any fool might imagine.
dte of diagnosis september 28, 2011. pray
now equip yourself with awareness of the situation, surround yourself with healthy space and people, get ready for 6-12 mths of a new journey and tell yourself every day you CAN do this.
Donna:
I just had a mastectomy yesterday for IDC. I am not sure what to think. I am meeting with the surgeon again in 2 weeks. He also took out 2 lymph nodes. My husband is of no help–got drunk today less than 24hrs after the surgery. We have a son with autism. I don’t know where to turn.
when people let me down I look at the night sky and the stars and feel the wind and keep company with the trees and know I am in company with a living, breathing, harmonious earth of which I am part. Of course there’s always support groups to turn to, including online ones. Parenting oneself well means you can’t be let down and it can be an adventure in self affirmation. All the best.
My granddaughter Kaitlin thinks a great deal of you and your accomplishments. I join with her in my best wishes for your rapid recovery with as few treatment side effects as can be had. The journey can be arduous, but recovery is a wonderful modern blessing. My mom died of breast cancer in 1974, just as chemotherapy was beginning. How times and treatments have changed. I will wear a pink ribbon for you.
Hi Donna. I have also been diagnosed with Ductal carcinoma (nos) as of 30th Sep. I had a mastectomy on the 12th Oct. 13 lymph nodes were excised of which 5 were malignant. Got a bone scan next Friday and then going to be hit with the BIG guns (chemo for 6 months followed by radiation)!
I found such a beautiful quote yesterday in a book I am reading which I repeat to myself:
“you always have to make a huge detour and overcome all sorts of obstacles before you reach the mythical scarlet flower on the tallest peak of the highest mountain.”
Antoinette Pienaar (The Griqua’s Apprentice)
May we both reach our scarlet flowers. x
hi Karin,
I have my last chemo next week… so been three months worth, 4 cycles, 3 weeks per cycle.
it was tough but everyone does it differently.
I’d say best tools were yoga daily, an osteopath, walking, a great anticandida program, youtube and wikipedia, an all night pharmacy, humor when possible, an ongoing life adjusted to chemo.
You’ll get there.
it aint over til its over.
lots have bounced back from worse.
warmly,
Donna
Hi everyone, I was just diagnosed with IDC today. What does the (nos) stand for? The biopsy Dr. was very positive. He said it is a grade one. I’m still learning & researching but I have a great group working with me. The nurse coordinator is great. She set everything up for me from the follow up mamo, ultrasound & biopsy on the same day to all the insurance coverage. She set a surgeon visit up for me in 2 days. We will see where we go from there. Like you Donna I feel very strong!! It’s strange as I was an emotional wreck waiting for the biopsy results but now feel calmer & ready for battle!!!
God’s Blessings to all!!!!
Hi Sandy, Nos means Not Otherwise Specified… that’s to do with the types of cells… so theres standard IDC and IDC Nos. Glad yours was grade 1, there’s grading and staging. Mine was grade 2. Stage is the size and infiltration, grade is how fast growing it is. Grade 1 is good because it MAY mean only lumpectomy and no radiotherapy, no chemo. I hope its that simple for you. All the best. Donna
Thanks Donna, I hope I remember & know all the questions to ask the Dr. I’ve always been under the inmpression that one should opt for a total mastectomy so as not to have to have treatment but maybe I will be able to have a lumpectomy. Will have to see. I’m taking my husband for support. He is a great soulmate but I’m sure I’ll be the one taking notes & asking questions. I’m so greatful to have found this blog!!
Thank you!!!
HI,
I was diagnosed with IDC yesterday. I am still in shock. I have 3 and 4 yrs old in home and i have the best housband in the world. By profession, i am a nurse but boy it is scaring me! I don’t know what it mean to me adn my little one and my husband. But i am trying to be strong and be positive. I will have my surgery on December 16th. Let’s pray together for the best.
Thanks.
Hi Gita,
it ain’t over til its over… many cases of IDC involve tumors under 3cm with no nodes involved so chemo isn’t on their dance card…
if the start up cells are non-comedos the return rate is low and the growth rate is slow enough to catch any newbies so keeping the breast is perhaps not as precarious.
opting for mastectomy often means getting out of the radiotherapy queue plus has the advantage there’s nothing for new breast cancers to start up in.
those who go for reconstruction are sometimes happy, sometimes not, some were happy with the recon but then found radio made it all hard and shrunk what was there
I’m happy with the full mastectomy and get my other breast removed in Feb to avoid return as comedo start ups are high rate and can be fast developing so by the time even a 6mth mamogram comes around it could already put me back into the chemo drama I just emerged from.
but all in all, know that even if you do chemo or radio, you will come out the other side of it
know that lumpectomy sometimes means the margins aren’t clear and a 2nd op means longer time for complications that mastectomy gets around
know that keeping breasts is a whole other issue to buying a future
know that Kiera Knightly looks fine flat chested
know that I’ve even known of someone with an 11cm tumor plus secondaries who finished chemo with them shrunken enough to remove and has been 5 yrs cancer free, so if she can be cancer free, the rest of us have an easier run.
so chances are you will get through this, get your new expiry date and life will go on, and on, with your kids, and hubby and home.
if you have to do chemo, look for the humor, embrace the journey, don’t fear baldness, and look at the journeys of those who did it with humor and dignity.
here was my journey http://blog.donnawilliams.net/2011/09/02/landing-on-mars-first-day-of-chemotherapy/
warmly,
Donna
Hi all, I had my surgeon visit today & decided to have a mastectomy on Dec.13th. I liked the Dr. & like that he is also in the reseach side of this. My mass is 3 cm with lobular features. I was reasurred I did nothing wrong!! Why do we always think we did? Anyway I’ll keep you all informed as to how it turns out. I am amazed at how short my hospital stay will be & look forward to getting the surgery over. We will see at that time if anything else is needed. I’m hanging in there & again thank Donna for this blog & all the information I was able to ask the Dr. & his nurse. Stay strong!!! Sandy
mine was a 3cm. mastectomy is a sensible decision with such a large sudden tumor in my opinion. here, 3cm means into the chemo queue… so if that’s you after this, don’t worry, you’ll make it through the 4 x 3 weeks cycles and I’ve done that journey as have many… think if it as a spring clean and earning a new expiry date. Warmly,
Donna
Hi Donna — I have not read your entire blog but will tonight — I have been for the mamogram, ultrasound, ultrasound guided biopsy and now have to see a Surgeon because …. I have tested positive with Invasive Ductal Carcinoma — I do not know much — other then the pathologist report said that I required an “urgent” appointment. That is where I am right now — I am scared silly — it is the unknown that scares me — the waiting — thank you to all of you that have posted — I will pend much time reading this tonight.
Joanne
Hi Joanne,
first, don’t panic, the docs will guide you through it all.
second, IDC can be anything from, small to large lumps, one to several, those in places that may not have invaded lymph yet and those that may have, and not all will require radiation, chemo or even suit medication treatments, so sit tight and they will soon explain what YOUR IDC is all about and what they’re going to do. From there there are choices, including which way to go with breasts, and you will work out what will work for you. It’s a journey, you’ve found yourself on one, so make the best you can of it. Warmly, Donna
Was just diagnosed today with IDC Grade 1, will see the surgeon on 1/3, holidays throw big curves in scheduling time. Am concerned but realize we will deal with whatever is thrown our way.
All the best to you Barb. If you’re going to get cancer at Christmas, then grade 1 is the one to get! Surgeons need holidays but cancer doesn’t care what time of year it is. But on the bright side you are now about to turn the tide on cancer.
Hi all, well my mastectomy was on 12/13. The Dr. felt the sentinal node looked good so did not take any other nodes. Today was my follow-up & to get the tubes out. I didn’t get the best of news. He said they found a small bit of cancer in the sentinal node & I go back in on 1/10 to have underarm nodes removed. I’m so disapointed & scared!!! He said the ones he captured with the mastectomy were clear but if in the sentinal node they must check more. Then we’ll see what the breast oncologist wants to do. Like I said very disapointed & scared. I was doing ok emotion wise till this point. Donna I guess if you & so many others can deal with this so can I!!!
Sandy
Hi Sandy, I’ve updated the article to show you how I also had to face these sorts of surprises. You will come out the other end. It will be a challenge along the way but you are not alone. Warmly, Donna
I’m a bit worried about lymphedema when they remove the underarm lymph nodes. Does anyone know of ways I can prevent this? Also the Surgeon, who is also into research, is checking the hormone relation to all of this as that is the kind of tumor I had. I was on Estragen for 18 yrs. but he said this is not the hormone they are looking for. It’s the hormone we ourselves produce. That will tell him the odds of this cancer returning. At this point I’m totaly confused. I hope I can get in the researching & understanding mode you are in Donna so I don’t look like such a dummy through all this!
Wishing all a Happy Holiday!!! And it will be if we let it!!!
Sandy
Hi Sandy, I used compression sleeves… I made them from stockings but wore them on my arms
they worked fine. got the idea here then made my own http://www.nextag.com/compression-sleeve/shop-html
I dealt with lymphedema through chemo
learning lymphedema massage was so useful (from You Tube)
and also did yoga which helped.
check out my chemo article and you’ll see the many strategies I used.
re hormone receptivity… my tumor was estrogen receptive… that means it fed itself from my estrogen
so they then had to turn it off.. with Tomoxifen
some breast cancer is feeding off estrogen, others off progesterone, others not off hormones at all
having hormone receptive cancers is unfortunate but lucky because there are medications to block this.
Warmly, Donna.
and I kept reminding myself there was no place for self pity because people in the third world didn’t have our choices at all… they just die from this stuff. so regardless of our complaints, we are lucky.
I totally agree!!! We are lucky!!!
Well, saw the surgeon today, path is now set for mri, appt with radiologist, appt with oncologist, and surgery week after next. She wants to do a partial mastectomy with removal of the sentinel lymph nodes under the right arm. My preference would be bilateral mastectomy so there is no chance of it coming back, but she wants to wait to see what the mri shows, thinks the bilateral might be overkill.
Hi Barb, 95% of breast cancers start with in situ non-comedo cancer cells. These have a low return rate (from what I understand, around 1 in 20 breast cancer survivors with this non-comedo start up cells will have return) , are slow growing and only 30% malignancy rate.
If your pathology report cited that your breast cancer started with COMEDO cancer cells, these have up to a 50% return rate to the same breast and up to 38% return rate to the other breast, are fast growing and have 100% malignancy rate so presently in the US this means docs are supporting double mastectomy for even in situ comedo carcinoma of the breast. Check your path lab report from the biopsy and whether it mentioned comedo cells or ‘central necrosis’ or ‘necrotic’, which means the same thing, only comedo cells produce central necrosis. From there, trust your instincts and stand your ground.
Well, the fun keeps on coming. Last week I had an MRI of the breasts that the surgeon wanted done prior to surgery. Wednesday they calll that they found something in the left breast, so went for an immediate ultrasound and now have to have anotgher biopsy on Monday. So the partial mastectomy scheduled for 1/25 may now turn into a bilateral mastectomy, which is what I wanted in the first place. My son said, “well Mom, God is answering your prayers just like you wanted.”
Hi Donna,
I just read your blog today, I wish I could have done it two months ago when I had my first mammogram and I was told I needed an ultrasound right away, and after that a biopsy was done in my right breast. On January 11, 2012 I was diagnosed with IDC. I’m still waiting for my complete pathology results. The results that I have now so far read well-differenciated, prominent tubule formation grade 1/3, moderate nuclear atypia grade 2/3, low mitotic rate 1/3. It also reads, tumor necrosis not identified, lymphovascular invasion not identified, microcalcificatons not identified and ductal carcinoma in situ not identified. My immunohistochemistry report is pending. I know my tumor is about 7mm by 7.8mm now. I am having lumpectomy on Monday the 23rd and a biopsy of my lymph nodes will be taken. I’m scared and worried that this cancer will come back. According to my Dr. I will be getting radiation for six weeks, five days a week after my surgery, and we will see if I will need chemotherapy or not based on the lymph nodes biopsy. I see that I am not alone and that at this point the only choice I have is to fight. I will appreciate any comments, and prayers.
some good signs there, no tumor necrosis (comedocarcinoma), well differentiated cells, low mitotic rate plus no lymph involvement and no microcalcifications are all better signs than their opposites. Also a 7mm tumor is in the small range, which is great. Mine was 3cm which is in the mid range. Tumors under 3cm often don’t require chemo unless other factors like calcifications, lymph involvement etc. Of course I’m not a doctor, but all the best no matter which way your journey takes you. warmly,
Donna
Hello all,
I had my histology feedback today after undergoing a mastectomy ten days ago. IDC 2cm tumour and precancerous area in breast. Oestrogen responsive, HER negative with signs of cancer in the sentinel node. I have nothing in writing so this is what I have remembered. It is either stage 2 or grade 2 and I can’t recall which.
I’m having my lymph nodes removed on 21st Feb and then chemo and hormone treatment. I am feeling quite down this evening as my husband and father are both in the local hospice, they are due home next week and both have late stage prostate cancer, I am their carer so I don’t know how we will cope. I’m glad i found your website this evening, it’s good to hear how others are coping and not to feel so isolated.
Hi Rowena,
my 3cm was the combined result of two start up points that joined up. So similar. My sentinel node was ‘negative’ with ‘reactive changes’ one interpretation of which was it had been in the ‘process of changing’ after having tried to fight off cancer cells. The good news is chemo will go clean up. You can and will survive chemo. A hospital social worker should be able to arrange a stand in for you in your carer role. I am here as a peer for you.
Warmly, Donna
Diagnosed yesterday with IDC. Totally unexpected, even tho I had to have a biopsy last week. Figured it was nothing to worry about, as my sister had DCIS about 14 years ago. Thought if there was anything wrong it would be DCIS, which I knew was not too big of a deal. So, the diagnosis was a major shock. I don’t know much yet, other than I have a battery of tests scheduled over the next few days, CAT Scan, MRI and blood work. Back to Dr. next week for treatment plan. your site has given me a lot of information and food for the questions I need to ask. All I know is that we caught it early and I will likely need a lumpectomy. Dr. said it was either 2mm or 2 cm – can’t remember which. Just remember the words ‘very small’. Thanks for helping me educate myself. Hundreds of thoughts going through my mind – lots of things to learn and understand.
all the best Nancy
ask the doc if the DCIS that started your IDC was COMEDOcarcinoma
if comedo, you’ll see the word ‘necrosis’ in your path results
regular DCIS is not necrotic, its what comedo cells do
comedos have up to 50% return rate the same breast (and up to 40% to the other breast) so if your start up was comedo cells and you value your life more than your breast, then don’t fear mastectomy.
if the start up cells are non comedo, return rate is very low, so you could feel safer if offered lumpectomy.
remember comedo DCIS are only 5% of breast cancers so you’ll probably not be in that group
so if you’re lucky enough not to be, that would be great.
warmly,
Donna
Was told 12/15 I have IDC-upper right- not sure of the size because my breast are very dense. The path says 1.4-2.2cm..took a PET scan and the cancer is in the one spot. They feel they can reduce the lump to nothing with chemo then do the lumpectomy..with clear margins. Unk really if the lymph nodes have any cancer cells but they are not swollen and didn’t come out on the Pet scan. I sent my Dr a fax with 16 questions. I am ER and PR positive and also HER2 positive- I have completed 2rounds of chemo TCH (2chemos and Herceptin) they said I would be on Tamoxofin for 5yrs…not really happy about that..I am 47 premeno..and I am told the cancer finds away around the Tamoxfin after 5yrs.yes you can use AI because I would will go into menopause by then…but now my concern is recurrence I chk my path report like you have told others- it says Ductal carcinoma in situ,high grade with necrosis,solid pattern. I have been thinking maybe I should do the mastectomy and now I am thinking bilateral mastectomy might be the way to go.. what are your thoughts.. shrinking the tumor is called Neoadjucunt which has good results but I want 20-30yrs-I am also thinking they should take my ovaries to stop the estrogen. Hope to talk to my Dr next week–
oh one more thing – how painful is mastectomy? And how long does it take to get back to “normal” — I own a business and it’s hard to be gone so long..
And is the scarring really bad?
Hi Diana, the high grade with necrosis part worries me… that essentially sounds like Comedocarcinoma. In the US now comedos, even in situ are being fast tracked to mastectomy, not lumpectomy because comedos have 100% malignancy and high return rate, unlike non comedo start ups. All I can tell you is that in the research, return rate for comedocarcinoma is up to 50% to the same breast and up to 40% to the other breast. They also grow FAST so I had a mammogram 8mths before my cancer and nothing was there and mind sprung up in 3 mths. I can tell you I was 47 and pre-menopausal. I coped fine with sudden menopause, coped fine with the Tomoxifen (at the three mths stage at present and no issues). Re mastectomy and pain I took only panadol with the first one, was going out to dinner by day 3 and with the 2nd one took only 2 panadol in the first night, then nothing and was home within 24 hrs (with drain tubes) and those come out around day 4. I think the pain for me is no more than a bruised and grazed knee! As for scarring, I think mine are very neat and I feel fine about my ‘ballet’ chest. I have two neat straight lines. Here’s a great site for pics of beautiful women who had mastectomy http://www.youtube.com/watch?v=PpFaIJdIQC4 There are also mastectomy tatoos which can be wonderful if you wish. I chose no reconstruction. I feel good with my choice.
All the best to you
Warmly,
Donna
re your ovaries, you need them if you can keep them… they are really important for heart function. And its the BREAST TISSUES that comedos return to… no breast tissues, they don’t have anywhere to start again. Comedo cells are one type of breast cancer cell (the necrosis type) and these I’m told rarely exit breast tissue. If cells broke away then chemo should clean those up and Tamoxifen would keep any loose ER+ cells from feeding themselves out there in the body. But getting rid of your ovaries won’t stop estrogen because apparently even our fat cells can produce it! I asked the oncologist the same thing… was scared of Tomoxifen and asked if they can’t just take my ovaries… but no, would have done me no favors. Re the hoo ha about Tomoxifen, the ACTUAL risks are very low compared to the benefits. And after 5 yrs you should be fairly safe, but, yes, if you have had comedos, then I personally feel much safer with no breast tissue any more.
Hi I’ve jus had lumpectomy at least 4cm I’m waiting now for results in ten days Ive have Idc they said on scan carnt c anything in lymph nodes keep readin all the things about this but just carnt understand I want to be able to now what doctor is saying next week so I have to keep on readin I been told I have to have chemo and I’m prepared for this I
Hi Debbie, all the best to you and stay calm, get sunshine and surround yourself with positivity and humor.
Tumors over 3cm end up off to chemo even if lymph nodes are negative for cancer. this is because at that size they are fairly guaranteed to have made their vein systems and cells to easily break away and pass through the lymph nodes even if not turning those cancerous in that process.
One good question for your doc might be “were my start up cells comedocarcinomas” (ie look for the term “central necrosis”). If they were NOT comedocarcinoma cells that started your breast cancer (and only 5% of breast cancers start this way) then there would be a much lower return rate to your breast tissue of new cancer cells starting the whole process there again. If they say, yes, yours started as comedocarcinomas, then consider this for the future as I know some places in the US are offering those in this group double mastectomies because the return rate puts them at too much risk with just lumpectomy.
Hi Donna, I have been diagnosed with Carcinoma In-Situ and am
scheduled for surgery (Mastectomy) in four more weeks. (If I get over
a flu (viral) that has lasted 5 weeks. My pathology report said that
my tumor was described as cribitype & solid at 11:00, grade 2. Added
comment was worrisome microinvasion.Description 3.1 X 2.2 X 0.4 cm
aggregate. Maximum single focus as noted on glass slide, 0.6 cm.
Positive 90% estrogen receptor & 90% strong positive Progesterone
receptor. I am just learning what all of these terms mean and it has
helped by reading your comments herein. Please give me your thoughts
on this..not sure of the comment, worrisome microinvasion? Warmly, Anne
What would micro invasion indicate in pathology report, along
with diagnosis of Carcinoma In-Situ, grade 2. Location 11:00. Scheduled
for Mastectomy in 4 weeks. I’ve learned much from reading on your
site and would appreciate any thoughts you may have. Warmly, Anne
Hi Anne, nothing there says comedocarcinoma or internal necrosis which would indicate comedocarcinoma. As such you’re type probably won’t have the high return rate comedo types do. My comedos were multifocal (more than one), started out in situ but became invasive and developed into other types of cells, including cribriform. Solid is good, it probably means it doesn’t have thread like structures that can easily break off… single focus is great, it means one cancer not several that joined up (multifocal)… microinvasion probably means it is just breaking out from in Situ, just starting to become invasive… so that’s probably pretty good in the scheme of things. 3.1 x 2.2 x 0.4cm…. well mine was 3cm and generally over 3cm means chemo here because once a tumor is that large it is known to have a far greater chance of having stray cells get into or through the lymph/vein systems. But if you do chemo you will survive it, so don’t be too scared, your oncologist is an expert guide for you. Its also great they are hormone receptive as they can medicate you to stop cancer feeding off your hormones… non hormone receptive is harder to treat. Grade 2 is a quick grower, but not as fast as grade 3… but it means don’t stuff around, listen to your oncologist, get this stuff treated ASAP.
All the best, Donna
Hi again Donna, thank you so much for responding to my questions
so quickly and I sincerely appreciate your thoughts and guidance as
I can see everyone is benefiting from your knowledge, time and
encouragement including me. One thing I did not mention last night
were several other things, (I don’t know how relevant they are) that
I did not include in the e-mail to you and listed in the pathology report
from biopsy. Associated desmoplastic fibrous response, and associated microcalcifications. I would like to add that until I went to my primary
care doctor last week to sign for a release of this report, I was not told
most of the things in the report. The doctor just said, it was small,
contained carcinoma In-Situ. I would have like all the information before
I saw the surgeon, it would have given me enough information to ask
more questions of the Surgeon. My concern is if this is a fast grower,and
the possibilitiy of invasive, My waiting for over five weeks for the surgery
makes me a little anxious to say the least! My first mammogram was
in the middle of January, second one in February followed with sonogram
and biopsy.
yeah microcalcifications are one of the indicators of necessity for mastectomy as they can indicate higher return rates. Yeah, five weeks would worry me… but yours is In Situ so maybe they feel you can afford that… and the microcalcifications, although those could lead later to higher return rates at present they haven’t become cancers… the grade 2 part meant you have faster growth than grade 1, but still if things are In Situ maybe that’s the important part…. mine was not In Situ… it had well moved on from there into invasive ductal carcinoma (IDC). If you can afford private you could probably get quicker surgery… ask them the out of pocket cost. also with the flu you do need strength especially if you end up in chemo, so maybe these next few weeks you can focus on recovery from flu… so focus on calming yourself, laughing, yoga… things to help your immunity.
Just got partial biopsy results today – Stage II invasive carcinoma – Happy Birthday to me – turned 63 today! Can’t say I’m surprised, knew it was cancer before I went for the mammo due to the puckering and enlargement of my breast. Still waiting for the estrogen, progesteron receptor & HER2 results – meeting with the surgeon on Monday to discuss treatment. I am my husbands sole caregiver since his brain aneurysm, he is 100% dependent on others (3 years now), my biggest concern is how I’ll take care of him. My son is getting married in Punta Cana in 3 weeks and I am still planning on going to the wedding (haven’t had a vacation in 4 years). Getting all the tests and scans before I go and will tackle whatever comes next when I return. I’m a nurse, have worked in Hospice and now Clinical Research, which is both a blessing and a curse. I’ll know more on monday but the information on your blog has helped me formulate questions for my meeting on Monday. Thanks for doing the blog.
Hi Diane, bummer that was your birthday present… on the other hand you are hopefully now on your way to NOT dying! If you don’t end up in the chemo queue you will probably be able to get through surgery and still more of less fulfil the carer role. But in chemo it would be a major struggle so maybe now’s the chance to at least arrange plan B for his care. Re the wedding, if you’re doing chemo you may find yourself challenged in the immune dept re being on a flight, crowds, but if you really need to do it, you can always don a surgical mask… I did sometimes during my chemo…. and there’s always a SKYPE appearance provided they have a laptop there you can appear on, so you could still dress up, even raise a toast, just it might be via Skype. All the best and hope you get to go to the wedding one way or another. Warmly,
Donna
Thanks Donna. Will find out on Monday what the surgeon wants to do. Hoping chemo can wait and can face everything when I return. I really feel I need to get away for the 10 days to prepare for what comes next. Even before this came up I realized I needed a vacation for myself, its been a rough 2 1/2 years with his medical issues. Can’t even begin to have a Plan B – he has no family, mine has become his over the past 20 years. Hope everything is going well with you and I wish you contiinued good health.
Diane, ask to speak to the hospital social worker, see what help they can offer. Don’t put off your chemo, listen to the oncologist. If you put it off then you have a higher chance of it not being fully killed off by chemo…. chemo is like weedkiller… you want to get the seeds before they become seedlings or plants which will then flower and drop new seeds… get the seeds, kill them, get on with life… everything else will wait.
Hello Donna…I was diagnosed on 3/6/12 with IDC..1cm mass behind the nipple area. I had the biopsy 3/19/12 and all reports came back but the HER2 as of yet. I am Grade 2, Stage 2A. No swelling in the Lymph nodes physically found and nothing found in the UltraSound. I am having a partial masectomy on this Friday 4/6/12. The surgeon says she will remove the nipple area wide and deep and do the nuclear stuff for checking the sentinel node…I suggested a total removal of the breast but she was not receptive and said truthfully the partial is what she feels is best for me at this time. I see the Oncology Radiologist on the 16th of this month to discuss treatment. Chemo will be decided after the pathology report from the surgery results. I am 61 yrs. old, already thru menopause, my bloodwork fasting and the CBC all came back great..said excellent actually and the EKG I had last week was also great. I am not opting for reconstruction surgery..my choice. She felt that I would do well with shoulder pads or pads of some sort to fill in the cup of my bra. I have great faith in my Oncologist, Surgeon and the staff I have dealt with so far. They have been honest and answered anything that I have asked.I feel optimistic and am open to any and all treatment suggested to me. I also use humor often to get thru this journey and have a wonderful support group in my husband of 42 years, children and grandchildren. My sisters are my cheerleaders and all family and friends have been wonderful. I feel that from day of diagnosis to surgery has only been 30 days..seems like all prayers and Angels around me are working in my favor. I know there is more I need yet to know and learn about. Your blog is wonderful and so informative. I do want to keep a good mind set and attitude throughout this ordeal. I have spent the last 12 years raising two of my grandchildren and the past five years being the 24/7 caregiver to my Father in law until his passing in October. Now I am putting the 24/7 focus on me and doing all I can to get through this. Thank you for your input and sharing your story..I hope I can be as knowledgeable of the terminology and data that you are. Bless you and take care.
Hi Diana, nice to meet you. Glad they’ve got your tumor early. I’m presuming its non comedo if they are happy to do lumpectomy. In any case all the best with that. I went one breasted for 6 mths after my first mastectomy and found clothes that worked with one breastedness. You can also get iron on hemming tape and use it with a small piece of fabric to make an iron-in breast form pocket in anything you want one for.
Warmly,
Donna
ive just been diagnosed with invasive ductal cancer and am currently waiting a masectomy. Ivebeen told that i will have to have 6months of chemo and maybe radiotherapy tagged on to the end, i dont mind telling you that i am scared.
Hi Jayne, welcome. I didn’t have to have radio because going breastless with no recon there is no breast tissue to radiate, so that was one of the upsides for me. I’m presuming you’re having a single mastectomy, or do you have BRCA or your IDC start with comedos? Have you see The Scar Project… worth looking at, really humanising http://www.youtube.com/watch?v=GI5w6Bv5eZs . Chemo is tough and 6 mths seems an eternity, but you will make it through and even though you may feel you’ll never get back to a normal energy level or health, most do. I was really knocked about for around 4 mths after chemo but I’ve pretty much got my normal energy levels back now, around the 5 mth post chemo mark. Remember that you are now at the good part… people will help you save your life, chemo will help save your life… and it will help you review all the energy drain in your life, reorganise it as the ‘energy police’ and it will become a healthier life through chemo and post chemo. Warmly, Donna
Hi donna Im only having the one breast removed i go into hospital on the 25th april i am having a pocket put in with a view for reconstruction at a later date if all goes well. I just want to get the op out of the way.
jayne
I went one breasted for 6 months. The important thing is to focus on saving your life. Breasts or lack thereof will wait. Warmly, Donna
hi donna hope you are ok, i have patholoy report and i am her 2 positve and er negative pr negative . i go into hospital for a masectomy on wednesday they are also going to remove the sentinal node. Fingers crossed that my lymph nodes are ok .
jayne
All the best for Wed Jayne. Let me know how it goes in the lymph node dept. Warmly, Donna
Well I am back, had a bilateral mastectomy with lymph node removal onboth sides with no reconstruction, on 1/25, out of hospital 10 hrs after surgery, driving a car the next day. Can’t say I am overly happy with the way my chest looks but husband says I am being impatient, maybe so. Thanks to your blog Donna, I have learned alot and been better prepared for all I had to face. God Bless you for sharing and all the women you have helped. Am facing a little depression now, not able to travel and oldest granddaughter is graduating from college in two weeks, but guess I am lucky to be alive and will deal with it.
Welcome back! Yay, you star. Yeah, with my 2nd mastectomy I was out within 24 hrs. Now with no recon, my first was a bit concave from the time it was done in July through to April when I notice it had flattened out – yay!!! And with the second, done in Feb, it was concave and by April I thought is it ever going to flatten out like the first, but, yes, it is certainly on the way to that. So I’d say that pretty much flattening out happened by 9 mths post op. Your hubby is right. Also I had to befriend this new ‘angel’s chest’, ‘dancer’s chest’, ‘fairy chest’… I had to find my identity with it. And I did, especially once I learned how to dress with it, and I’ve come to really embrace this new look. And also its an adventure with a partner, what they do. Like, when one has breasts there’s this holding of a breast thing, but as a ‘flatsy’ I found (once things weren’t sore) that I loved being rubbed, firmly, like a cat or dog likes a chest/belly rub. And once I ended up putting my arms up in the air to get a nice chest rub – go figure
But I also love the closeness of being chest to chest with my husband, and I don’t feel ‘male’, I feel like his angel… I don’t imagine angels with breasts, or at least not a ‘breast cancer angel’. I asked him if he sees my scarring, my chest, as ugly, he says that when he looks at it he is moved because he sees what I did to save my life, to save us from losing years together. I joked that I’m not at all afraid he will be attracted to other women’s breasts, because a) they’re not on the woman he loves 
and b) better to be with the partner you KNOW has already come through cancer, not one who may well be the next walking time bomb! (yes, I’m healthily capable of shallow too 
I hope you can sort Skype to visit your granddaughter’s graduation. If they have a laptop they can bring it to the table and you can meet everyone through the laptop. Seriously, we do that here and its great fun for the visitor and our guests. All the best Angel Barb. Warmly, Donna
Thanks Donna for your encouraging words. Concave is exactly right, I tell my husband that I have an upside down heart on my chest, with the middle raised and the rest sunk in, lol. I got some bras and prosthesis but cant wear them cause my bra area is smaller than the rest of my body so they ride up, that is okay too, braless is fine.
I found wonderful camisoles that were cheap and great for me as a flatsy… they are by ‘Jay Jays’ and the whole breast area is stretchy lace with soft polycotton inside and I scoured ebay for them, charity shops, and gathered them in all sizes then modified them to my size… I now have around 10 of them, all colors, and so can wear them under anything so if I lean forward, my chest is still covered… and they are sexy
In pullovers I found the shaggy ones worked best because they really hid any concave shape and they also looked and felt so snuggly.
and I got a load of tops and over pants type dress tops that had yolks and fell from the yolk with some nice gather and this made me look as if I just had small breasts but also looked really pretty, and were comfortable… and with a Jay Jays camisole underneath it didn’t matter if I leaned forward because the camisole did what a bra would have (but no breasts required
and over my tops I tended to wear flowing waitcoat thingy’s… all from the charity shops so really cheap wardrobe… complete wardrobe overhaul for around $100… and I found I could also make these from cardigan tops by removing the sleeves, but they just added some texture and reduced any self consciousness around having no side breast shape.
and if you ever want some breastedness without a bra, you can buy iron on hemming tape and make your own soft breast forms (or just rip out some 80s shoulder pads from something from a charity shop) and you attach the hemming tape, leaving enough to still iron into whatever top you wish to add some breastedness too. I never bothered, but it can be easily enough done.