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Ever the arty Autie

Living with Invasive Ductal Carcinoma Nos


Breast Cancer Awareness, photo by Donna Williams

Breast Cancer Awareness, photo by Donna Williams

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.

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.



Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.

I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.