Significantly different outlook after mastectomy

Candilea

Hello all,

Yesterday I received the initial pathology results from my bilateral mastectomy, which was on Sept. 5. Major points that are different from prior to that surgery (I didn't update my info below) are that 7 of 16 nodes had cancer, and there was a 11.5 cm (!) tumor. On the MRI it was designated as a non-mass enhancement, but was not a biopsies area. They did know at the time that 60% of my breast tissue was involved.

I meet with my cancer surgeon Monday, and oncologist Tuesday, but right now I am just sick. This must change everything in terms of prognosis, correct? All I can think about now is how I have less time, that what I thought was a survivable situation no longer is. That I'm not a ten year survivor, maybe not five. That tumor size is so large I can't even find studies that talk about similar ones. I can't get my head into a good place at all.

Does anyone have a similar situation in terms of size, or of such different results from surgery?

Thank you... You are all wonderful and I have gained a lot of strength, albeit silently until now, from you.

ksusan

Hi. Can't see your stats at the bottom--be sure you've switched over from private. Do you know if the tumor was DCIS or something else? The size matters, but the type of tumor does, too.

I'm sorry it's the weekend. Maybe figure out how you're going to stay centered between now and your appointment?

Candilea

Thank you... I've switched them to public!!

OnTarget

Hi! That is awful to have such a change in diagnosis. I have no idea what difference the size will make, hopefully none! You only had cancer in less than half your nodes which is less than a lot of people with much smaller tumors. Hopefully that means something positive!

I'll be thinking of you and hoping that you get good news from your MO!

xxyzed

My surgery results differed from diagnosis not in size of tumour but in number of lymph nodes affected. They initially thought about four affected nodes but it ended up being all of the nodes that they removed were cancerous including infraclavicular level 3 nodes that are not usually removed unless they really need to. I felt like a dead man walking leaving that appointment. My prognosis was not good so aggressive treatment was recommended. In reality the only thing that really matters in terms of prognosis is how your body and your cancer responds to treatment. Some people luck out and recur quickly while the majority go on to live long lives.

Shellsatthebeach

My oncologist said the same thing xxy stated above. She told me to stop focusing on stage because it really means very little in terms of my survival. It really is how your body reacts to treatment that will make that determination. Stage lets them know how they will treat the tumor. Being a stage III takes the guess work out of them giving us the most aggressive treatments.

Newnorm

Hi Candilea

Although I’m certainly not a long term survivor yet, I too had a massive tumour, nearly my whole breast, together with a significant number of nodes. I read something on this site that helped me. It’s either going to come back or it’s not. Some are rabbits and travel around quickly, others are turtles. Hopefully we have turtles. Try not to spend too much energy worrying. Easier said than done, I know. But size isn’t the death trap it used to be, so don’t get ahead of yourself. Hang in there. Be kind to yourself. Big hug.

Lucca06

Hi Candilea I had a very similar status to you. 12cm cancerous area in my breast, basically my whole breast, grade 2 and 9 out of 18 lymph nodes affected. I had chemo before mastectomy but from the MRI and biopsies at diagnosis the tumour seemed smaller and they said only one node affected. Post mastectomy I was totally bereft and convinced that, that was it....

I am 8 and 1/2 years out from diagnosis now and over 8 from the mastectomy and doing really. My life is happy and fulfilled and I actually don't think about it too much!

It is a long process but bit by bit you will feel better and get your strength back. Horrendous as it is, it is still definitely a survivable situation, believe it. Take care.

Meow13

Believe it or not your chances are good, there are so many in similar situations that do just fine. There is nothing that suggest you won't be here in 10 years.

Size and number of nodes is not always a predictor of recurrence. Don't believe the statistics they are out of date, especially for later stages.

mpv459

I hope that those of you who continue to post years out realize how important it is for those of us still in treatment... Sometimes if it weren't for your hopeful posts I would be on the ledge and you bring me back. I am not the original poster but you guys are awesome. I hope someday I can do the same for someone else and join you being one of the voices who reach out to the newly diagnosed with such sound advice and love. Thanks so much..

Candilea

A huge thank you to everyone who has posted and reached out to me... I truly benefit from what you're sharing with me, and find comfort.

In the days since I posted this I've met with my cancer surgeon (I have to have another surgery to remove my nipple tomorrow) and my oncologist. I had loads of questions for them both, as you might imagine. My surgeon was pretty upbeat about prognosis still, and mentioned that with the newer staging method from AJCC, which has begun to incorporate er/pr & her2 status, I would still be considered the same stage because of the effectiveness of treatment. And that outlook was good in terms of treatment and survival. My oncologist today was more guarded, characterizing it as stage 3, and more concerned with the nodes and size and recurrence. So. He is still confident in treatment and such, just being frank about the issues and odds. But, he also acknowledged that some statistics are still weighted by outcomes that didn't have the treatments we use today, such as mortality rates.

He did ask me why it was so important to be one stage or the other, and I asked myself that question too, and it clearly has something to do with being able to believe in and pin hopes on a better outlook. But, we don't always get what we want, and we have to find ways to cope and live with that. I'm trying! All of you are helping, so thank you.

trinigirl50

I am not a long term survivor, just at the 4 1/2 years mark. I did the Predict (which has me probably dead at 10 years, and even more likely to be deader at 15years - hahaha), the Cancer math was a bit more hopeful having me probably still alive at 15years (although my tumour size and number of nodes were too high to calculate hahaha). So I put in the stats of two friends of mine, one was triple negative. Statistically she is supposed to be dead - she is 10 years out. And the other friend who is ER+, her chances were 14% survival at 15 years - she is nearly15 years out, so I think she'll make it. Stats aren't personal, so I don't take them personally.

trinigirl50

I forgot to say that my initial pathology was supposed to be 2cm with maybe 4 nodes involved. I ended up with a 6x6x4 area (ILC so not one big lump) and 20 positive nodes. I have small breasts - so basically my entire breast. None of this was seen on mammogram or ultrasound.

Talk about a shock.

Lexica

candilea - I am in a similar situation - a 12.5 cm tumor and 5 positive nodes after chemo. Not very far out, and the recurrence fear is always there, although dwindling. If it helps, you can look into clinical trials after you've finished your treatments. There are also other things that research has shown to reduce recurrence; exercising, keeping a low fat intake (<40g a day) and keeping your weight down.

Thanks for the inspiring stories trinigirl!

LaughingGull

I also found myself in this boat after surgery. My 3.5 cm tumor had been slowly melting during my 5 months of chemo (gone completely according to my MO, only scar tissue remained), and my MRI pre-surgery was all clear. Well, during surgery they found a 2.5 cm solid tumor in my breast, and 2 nodes (out of only 6 that were found during ALND); those two nodes had macrometastasis, extra capsular extension and what not.

This was a big disappointment. Also, it was very confusing. Long faces combined with upbeat messages that didn't seem to hold water.

"You are not a statistic!" --> But aren't statistics made of individual people?

"I am still optimistic about your case!" --> But wasn't the response to chemo the best predictor of survival? My pathology report showed "no definite response to chemo".

I went from this is a blip in my life to well, maybe it isnt.

I am working on accepting I need to live with this uncertainty.

Meow13

Statistics need to get updated periodically I'd like to see this happen say every 3 years.

Meow13

One interesting statistic I found is that the chance of a devastating earthquake , greater than 8.5 on Richter scale, in the next 30 years in Seattle is about 22%. Which happened to be about the same as my cancer returning. Nobody I know really worries about it.

LaughingGull

Meow, thanks. My background, academically and at work is Math/Stats, so I totally get what you are saying. My point is, up until the surgery all the talk was about how the tumor was melting, how everything was going away, how the most important thing was the response to chemo, how wonderful it would be to get a pCR. What we saw during surgery was not a pCR, no clean nodes, so how much worse were things getting? I couldn't get a straight answer. Lots of evasives. Yes, statistics are outdated. But if *they* (MO, BS, PS) had the cancer, they would care about whether they are stage 0, 1, 2 or 3....don't pretend nothing has changed.

Candilea

Just popping in to thank everyone for commenting. I still go back and forth between moving on and trying not to think about all of this so much, to desperately reading articles looking for some bit of information that will lead me to believe things aren't quite as bad as i think/know they are (prognostically, natch!). I haven't found it yet, but will certainly update this if I do!