Post Mastectomy Results

Too-Ticky

I've finally had my post-mastectomy results appointment and it's been a lot to take in. But also it's left a lot of unknowns.

What I know:

My invasive lobular cancer was 7cm in size (combined size of 2 tumours)

One sentinel node was diseased and one was fine (I wasn't aware they took two - it wasn't mentioned in the letter to my GP. But I'm glad they did).

I will need radiation to the chest wall.

They would like me to also have radiation to the axillary nodes, but not to have them surgically cleared. He thinks I'm a good candidate for that - whatever that implies. He said there's less risk of lymphodema than with surgery, but couldn't answer my questions about specific side effects or longer term consequences of that.

A sample of my mastectomy tissue is being sent to America for testing (I'm in the UK) - I *think* to find out whether I'll benefit from chemotherapy. The surgeon acknowledged that given I have several chronic health problems, chemo may not be a good idea (I may not choose to have chemo, but I'll decide once I meet the oncologist and they have all the information, and we can weigh up the statistics) Unfortunately neither my partner or I could remember what he called the American test, maybe you guys would know it? I think it's to estimate whether there's a low, medium or high risk of recurrence. Does that sound like I've understood it correctly? Does it sound familiar?

I need to have a CT scan to check for spread. Awaiting that appointment.

And a bone scan.

The surgeon said it'll be 4 weeks for my oncologist appointment to come through. (However, they also said my post-surgery results would take 3-4 weeks and they actually took 6 weeks, so I'm not holding my breath)

I forgot to ask what grade the cancer was or whether they've revised which stage they diagnosed it as being prior to surgery. Before surgery they said it was Stage II.

The nurses attempted to fit me for a silicon prosthesis (the softie makes me look very lop-sided as I'm big busted and I would really like to be able to stop wearing huge men's checked shirts to try and disguise it!) Alas, the hospital didn't have a silicon prosth big enough in stock, but will order in a couple of bigger sizes for me to try soon. So that at least is something to look forward to.

I still have seroma but as they weren't able to drain it 4 weeks ago and the pain from it is marginally better than it was, they'll leave it be for now and maybe try again to drain it if necessary later on. They said it'll probably just fill up again so might not be worth the pain of sticking a needle in again.

So much to do and to think about. Does anyone have any advice, please?

How do you cope with this stage of the game? It's like there's no end in sight.

LivinLife

Wow you are dealing with a lot Too-Ticky!!! I'd encourage you to ask about lymphedema risk with rads to the nodes as well. There's a lymphedema forum/threads on this site with very knowledgeable folks on there who could provide some insight, questions to ask, considerations, etc. The lengthy time-line you describe for results and then potentially for an oncology appointment is really sad.... I'm on another health forum where some has said the UK is all but shut down health care-wise so I feel for all of you. Obviously health care is not shut down though it sounds like things have really slowed even for serious issues. I hope you hear soon on at least a date.... Sending support....

letsgogolf

I had my nodes radiated and haven't had any issues at all. That was 4 1/2 years ago. They hit all of the node areas with the exception of the medial nodes which are apparently hard to get to. I had 1 node with micromets and a mixed tumor which was IDC/L (invasive ductal with lobular features). Best wishes for a complete recovery and a long life.

moth

the test they probably sent for is the Oncotype.

(Possibly mammaprint or prosigna but most people have oncotype done)

You can read about all the tests here https://www.breastcancer.org/symptoms/testing/type...

You can also run your stats through the Predict site and see how chemo influences survival. https://breast.predict.nhs.uk/tool

But the genomic test like onocotype will help guide the decision because you might be in a category that doesn't benefit significantly from chemo.

I had rads to axillary and havent had lymphedema but yes it is a risk. https://www.breastcancer.org/treatment/lymphedema/...

Best wishes with your treatment!

TwylaGirl

Hello all, I'm not sure if this is exactly where I should post this, but here I go. I am curious if anyone else has been in this situation before. I am stage 1B ER/PR (80%) and HER2+ (20%). I also am BRCA1+. I had two tumors, and 1 positive lymph node. I completed the TCHP prior to surgery. I recently had my double mastectomy, and the doctor removed 4 lymph nodes. The pathology report showed that I didn't have a complete pathologic response, but a very good response. One tumor completely disappeared, one tumor shrunk from 2.5cm to 8mm, then my 1st sentinal node came back positive, it shrank from 1.1 cm to 6mm, but the other 3 nodes came back negative. What is left is all slow growing. I will now have Kadcyla infustions, hormone blockers for the next ten years, and radiation for 6 weeks. I am 38 y/o btw. Since I had already had chemo, and the node shrank yes, but was still positive, the doctors are suggesting I go back in and have a complete axillary deconstruction before I start radiation. I am not sold. It seems like if there were any microscopic cells left, that is what the radiation is supposed to kill. If I choose to go back to surgery, it increases my risk of lymphodema to 20-30%. The doctors said looking at my scans, they can't see any cancer in my nodes, but this is the standard of care based on studies. The US doesn't have any studies currently looking at ER/PR HER2 patients with positive node post surgery comparing radiation only vs radiation and complete axillary removal to see if one or the other is better. Doctor said the additional drop of recurrence benefit is less than 5%. Other studies have shown that there really hasn't been a huge difference between the two. I don't know what to do, and am curious if anyone else has been in this situation before. Thanks