Living with Invasive Ductal Carcinoma 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.
Hey I was diagnosed with invasive ductal carcinoma( 2.3 cm shown on IRM) with large component of DCIS solide & focally comedo @ 1 o’clock upper outer quadrant. The IRM showed also 2 others suspicious area which showed negative result by biopsy. Some doctors advice mastectomy other quadrantectomy. Need your advices
Hi Randa, if you’re having one removed, no point having a lumpectomy of the other. It is easier to do a bilateral reconstruction at the same time or to go flatsy as I did and get on with it. Going flatsy means nothing to need radiotherapy for. multifocal comedo has a high return rate to both the same (up to 50%) and the remaining breast (up to 40%)… if both are gone you can get on with life without fearing all the time it will come back – my view. All the best. Do view The Scar Project http://www.youtube.com/watch?v=GI5w6Bv5eZs
Hi Donna doctors said want to do quadrantectomy on one breast (left) they didn’t mention the other one. regrading comedo the onco said unless we have good margins free of cancer cells there is no worries….
just know you have a right to ask for what you feel will be safest in the long term.
Thank you Donna for your prompt reply… 🙂 Wish you all the best
and you Randa. Always remember, when it comes to breast cancer, think more about saving your life, in the short term, and in the long term, than you think about saving a breast. Warmly,
Donna
intraductal and invasive ductal carcinoma the intraductal carcinoma is nuclear grade 2 necrosis the invasive component is nottingham grade 1what does this mean is this very bad
hi Diane,
Nottingham Grade is a grading system http://en.wikipedia.org/wiki/Nottingham_Prognostic_Index
intraductal means cancer cells that are within the duct… not yet invasive, also called ‘in situ’
invasive ductal carcinoma means other cancer cells that have developed beyond the ducts… hence invasive
so you have some in situ and some invasive cancer cells there
the ones that are in situ age grade 2 with necrosis…
in situ is great… means these one’s haven’t spread yet
grade 2 is higher than grade 1 but not as high as grade 3 or grade 4…
and because these were in situ this is not so bad as if he invasive cells were grade 2
the invasive one’s are a lower grade, grade 1 on the Nottingham grading system.
from what I can see this has a great prognosis… up to 93% remain in remission after treatment
saying that…
because the ones that are in situ are mentioned as necrotic this sounds like Comedocarcinoma cells.
These have higher recurrence and fast growth than other types of in situ breast cancer cells… and yes, they can and do become invasive…. the good thing is the docs are treating you in time to have a great prognosis.
saying that, if it were me, and you are not me, only I am me… as soon as I knew the start up cells were comedo (ie internal necrosis) I would feel safer with a mastectomy than a lumpectomy.
In any case, wishing you all the best and remember to ask your oncologist about anything you don’t understand… take a list of questions.
Warmly,
Donna
Hi Donna, Dx yesterday. Could you tell me how bad this is? 1. Breast, left infiltrating ductal carcinoma, favor combined nottingham histolocic grade 2. invasive carcinoma measures 0.7 cm measured on the glass slide. Estrogen and progesterone receptores including her-2/neu and ki-67 analysis pending with results to be issued in an addendum. Breast left, site #2 Infiltrating duct varcinoma. Favor combined nottingham historologic grade 2. Ductal carcinoma in situ. intermediate nuclear grade adjacent to invasive tumor. Invasive carcinoma measures aprox. 1.3 cm as measured on glass slide. Estrogen and progesterone receptores including her-2/neu and ki-67 analysis pending with results in an addendum. What do each mean? Then 2 more in right breast. I am 65, weight 265, massive beasts. thank you.
Hi Dawn, your oncologist will answer all so go armed with a list of clear questions. But here’s my layperson’s feedback for the present. IN THE LEFT BREAST: Grade 2 is higher than grade 1, but not as rampant as grade 3. So you’re in the middle there. the tumor is cited as 0.7cm which is less than 1cm. This is good in that provided lymph nodes are clear tumors under 3cm generally don’t mean chemo. Also the fact its under 1cm but grade 2 gives me the impression that it is the nature of the CELLS that is the cause of it being grade 2 not grade 1. ie that the type of cells may be fast growing… but don’t worry because you clearly got there early. You have another two tumors there in the left breast by the look of it, one that’s 1.3cm, which is still deemed ‘small’ (ie small is up to around 2.5cm, but large is generally tumors 3cm and larger) and another one that is also cancerous but hasn’t become invasive yet…You then say there are two more in the right breast. Comedocarcinoma is a type of cell that is high grade – ie spreads easily, grows rapidly, and tends to have up to 50% return rate to the same breast and up to 40% to the other breast. Whilst comedocarcinoma start out as ‘in situ’ – ie start out self contained and not spreading out, they are more likely to occur as multiple tumors and when they do ultimately become invasive they spread faster than usual. So, cutting to the chase… your oncologist will tell you what is best in your case. As for what I’d be doing… double mastectomy because I’d feel unconvinced it wasn’t likely to return. Your choices are then to have reconstruction, or go flatsy like me. If you want to wear foobies as a flatsy, you can do that… I don’t bother. This video shows some beautiful women who chose to go flatsy with no reconstruction. At 65 maybe you have enough confidence in your personhood to live comfortably with a ‘ballet dancers chest’ https://www.youtube.com/watch?v=GI5w6Bv5eZs . All the best to you in your journey. warmly, Donna
also if you choose to go flatsy with no reconstruction you may be able to skip radiation as there’s nothing to radiate 😉 and the other benefit is they won’t have to take your belly fat, butt fat or back muscles to create you new boobs… and you’ll have a flat chest which is easy to find any new lumps…. as for fashion… tops and dresses with gathered yolks, layered tops, sleeveless cardigans over loose fitting tops, cowl neck tops with Jay Jays elasticated camisoles underneath. People seem to have no idea I’m breastfree because of the tops I choose.
Thank you for your quick response. The right breast report reads: Infiltrating ductal carcinoma in situ, from combined not. grade 1. invasive ca measure approx. 1.3 cm estrogen receptors etc. issued in addemndum. My question 1. the addendums we are waiting for how important are they and how do i get them, or is that someth9ing the ongy doctor discussess with me monday? 2. Id I have double masectomy will i need cemo and radiation? Thanks and bless yuou dawn
Hi Dawn, remember, I’m a layperson, not a doctor. Re Addendums… no idea what that means beyond ‘added info yet to follow’. The deal with double mastectomy is often this… that provided there’s no affected lymph nodes and provided all tumors are under 3cm and provided there’s none close to the bone then usually by removing both breasts all the risk has, theoretically, been removed…. so chemo is only when they deem a risk still present in the body… see tumors are like clumps of sand… grains can float off into the lymph system or even off into the blood stream if the tumor is large enough and unstable enough… and so chemo is given to try and kill off those strayed cells to stop them forming tumors off in other parts of the body… but if the breast tumors are all under 3cm and the lymph nodes are clear, usually docs think its unlikely cells have spread into the bloodstream of lymph, so they generally don’t suggest chemo then…. as for radio… radio is to ensure there’s no cancer cells left in the remaining breast tissue… radical mastectomy removes all the breast tissue (lumpectomy leaves much of the breast tissue behind)… so usually when one has had a complete mastectomy, there’s nothing there to radio… no breast tissue. But ask the onc… they’ll have your answers far more specifically to you.
just got my utrasound guided biopsy results which reads:
poorly differentiated invasive ductal carcinoma
nottingham score 8/9 (tubules -3, mitoses-2,nuclei-3)
largest contiguous focus: 0.4 CM in multiple areas
Microcalifications present
Formalin time: 33 hours
BI-RADS category 6
don’t understand the numbers
your blog has been a great comfort for me
have an appt on Wed. with the surgeon
hi Norma, I’ll tell you what I know.
a) 0.4cm is a small tumor.
so provided your lymph nodes are negative for cancer you may not have to do chemo
b) BI-RADS has categories I-VI… this tells how likely the changes are cancer. VI is a certainty.
c) nottingham score is grading… ie grade 1-IV… from what I can see 8/9 on the nottingham score is grade 3
d) microcalcifications and focus in multiple areas means the cancer and cancer risk are not confined to one simple area… ie with lumpectomy that is more successful if there are no microcalcifications and cancer is in one focus, not in multiple areas (mine was multi focal).
good luck for Wednesday
If you’re offered a double mastectomy, have no fear.
Whether you go with reconstruction or go breast free, life can be good.
if you need a pal, I’m here to chat.
happy to skype if you need that.
Warmly,
Donna *)