Prophalactic Mastectomy for Early Stage BC?

[DeeUK]

Almost a year ago, I had a lumpectomy for an 18mm, node negative (assumed from sampling), vascular invasive, stage 1, grade 3, Er- Pr-, HER2+++ tumour in my left breast.

This was followed by FEC chemo, 30 sessions of radiotherapy, and now I'm 8 weeks into a years course of Herceptin.

After I'd had the lumpectomy, the consultant/surgeon advised me to think about a single mastectomy, due to the high grade and vascular invasion.
Two oncologists (one being one of the leading oncs in the UK) said that this course of action seemed a bit drastic, and in their opinion, there was no need for a mastectomy.

I seriously considered asking for a prophalactic mastectomy, because as so many other people say, it feels like it's a time bomb waiting to go off.

I eventually decided to leave it as it was, with just the lumpectomy.

I was told by my oncologist, that I'd have to decide whether to have a mastectomy, before I had radiotherapy. I assume this is due to the skins/tissue reduced ability to heal, after radiotherapy.
I've since finished radiotherapy treatments.

After all the advice on mastectomy, or no mastectomy, I found out I was HER2+++.

I still worry about my decision of not having a mastectomy, and I still sometimes wish I'd have asked for a prophalactic mastectomy. I don't know whether to talk to my onc about it, next time I see him.
To be honest though, he's not one of the most helpful people I've ever known, so I thought I'd ask opinions here..

Has anyone opted for a prophalactic mastectomy, or even a mastectomy on just the one side, for early stage? or are you confident (as can be) that a lumpectomy would be enough?

I know there are no definitive answers on this, but I'm feeling so unsure about my decision.

Any feedback is greatly appreciated :)

[CherylS]

Dear Dee,

I was also early stage 1. Even though I had other treatable factors, ER+ (Arimidex) HER2+++ (Herceptin) as well as undergoing AC & Taxol, I opted for a bilateral masectomy. My onc. did not push it, but nodded very agreeably when I told her I had decided upon it. For me it was a matter of doing absolutely everything possible to never revisit this again. I even had my ovaries removed so that I could take Arimidex as I am only 45. Below is an article I found a while back that made me feel better about my decision. If you should choose masectomy I do not believe that having had radiation rules it out. God Bless.

Local excision (removal of the cancer and surrounding tissue) of the recurrence resulted in 50% of the women experiencing a subsequent local recurrence, while a mastectomy following the initial recurrence resulted in only an 11% incidence of a subsequent local recurrence

Full article:
http://www.komen.org/intradoc-cgi/idc_cgi_isapi.dll?IdcService=SS_GET_PAGE&nodeId=328&useSecondary=true&cc_id=36225

[CherylS]

Dee,

I forgot to add that this article is addressing treatment of a first reocurrence, but avoiding one in the first place is a much better plan. I think this also confirms that the masectomy can be done after radiation, as the women in this article chose masectomy for a first local reocurrence and most likely had been treated with radiation for their original cancer.

[jeff]

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16624551&query_hl=1&itool=pubmed_docsum

This recent study suggests that for node negative cases there is no survival difference found for either surgical approach. For node positive women the study suggests lumpectomy is a better choice.

I know this is a hard and personal decision. Good luck with it.

Best,
Jeff

[mts]

I had two lumpectomies (lumpectomy plus re-excision a month later ) on the same breast. I also had AC+T, rads and now Herceptin. Last month I had my "good" breast cosmetically lifted and now they are both equal. I am really happy with the results. I am 43.

When I had my lumpectomy I searched and searched and agreed that the science behind the lumpectomy + Rads is equal to mastectomy and no rads. That being said, after all my research, I felt comfortable with my decision to go with lumpectomy. I know many women opt for prophylactic mastectomies. That's OK too. I can certainly appreciate their reasons -since I came up with the same reasons myself.

The difference with me is that I really did not see a difference in prognosis with either choice. My biggest concern is not with the breasts, but with any errant cancer cell that may have slipped off into the bloodstream...

In the end, it is a personal choice. If you are losing your mind with uncertainty, then get a 2nd opinion... Ultimately it is your choice, and no one will fault you for seeking peace of mind with a mastectomy.

Maria

[DeeUK]

Thanks for the replies.. I really appreciate them :)

When I was diagnosed last year, at age 29, I did lots of research too, and was comfortable with having a lumpectomy.

I wouldn't say I'm going out of my mind with worry about whether I opted for the right surgery. I just wonder if I made the right choice. And I often wonder if I'll regret just having a lumpectomy.

I don't know why, but I've started to wonder about it more often, recently. Maybe it's because I reached the end of chemo and RT.

Again, thanks for replies. It'd good to hear others opinions on this :)

[mts]

I think the wondering is absolutely NORMAL!!!!

It's been exactly 2 yrs since I was Dx'd w/bc and I can say that for me, I have reached a point I thought I never would... I really don't dwell on the cancer as much as before (Sometimes I would not sleep because "it" was all I thought about). Now, I actually can go through the day (and night) without the feelings of depression and gloom. I stay busy and focus on living.

I feel I have done everything I possible could to get rid of my cancer. I was super aggressive. And I am still convinced that lumpectomy + rads is as good as mastectomy.

I too posted a message similar to yours about 1 year ago. So, I am also convinced that the worry is again, NORMAL.

maria

[Olivia]

Hi,

I was diagnosed at 34, stage 1, Her2+, ER/PR-, grade III, .9cm. Had bilateral mastectomy, Dose dense A/C and taxol followed by a year of Herceptin.

For me, the decision was easy. I opted for bilateral mastectomy. I have a great deal of anxiety about my health (always have) and I would always be wondering what was going on in those breasts. My team of drs. neither encouraged or discouraged it... simply said they understood why.

I understand that the survival rate is similar for mastectomy vs. lumpectomy. Recurrence rate is a little different. However, I did what was best for ME. Knowing myself as I do...

Good luck in your decision. I know it is difficult.

Olivia

[DeborahNC]

Dee,

I had bilateral mastectomies Spet. 05. This was my second go round with BC; I recurred 2 years after a lumpectomy containg high grade DCIS.

My left breast was healthy, my right had small IDC and loads of DCIS (again). Stage 1, grade 2, node neg, Her+++.

I wish my DCIS had been tested for HER2Neu the first time; I would have done the bil mast. then.

As it is I've never looked bakc after my surgery last year. For me it was the wisest choice given that I don't have another breast to angst over. Those frequent mammos and the stress surrounding them was doing a number on my mind.

Search inside yourself and you will find the right answer for you.

Hugs, Deborah

[mekasan]

Hi
I was also dx at 29, stage 1 grade 3, er-pr-/ her2+++ in left breast. I had 4 cm of ductual dispersed throughout the mammory with two small IDC tumors hiding deep inside. I say hiding b/c they were undetected on any test (MRI, Mammo, ultrasound). My initial dx was stage 0, just ductal.

I went in for a left total mastectomy with immediate recon thinking I was stage 0 and that would be enough treatment. When the path report came back, I was stage 1, b/c they located the two small tumors. I now required chemo. After I finished chemo, i had the right breast removed.

During chemo a small benign tumor had grown in the right. I could not stand not having two breasts to compare texture when feeling that lump. I caught the first cancer b/c I had a built in measuring stick (the healthy breast). It also concerned me that tumors could sneak by undetected. I had four Mammos, three ultrasounds, two MRI with contrast and a mammo-guided core biospy in three months. It's not like they weren't looking.

Based upon those facts above, my personal feelings, and many more "pro vs con" lists (plus the fact that I have a kick ass plastic surgeon who made my recon breast look even better than my real one)... i decided to get rid of the right one. I am so pleased with my decision. All my docs were all for it. My second recon looks exactly like to first.

No matter what, it is always a personal choice. What is right for one person may not be for another. What you feel is right may not be understood by others. (i.e. my parents did a double take when I told them I was planning to remove the other). Do what you feel is best. Once the cancer is removed, you have time to make your choice.

Good luck.

[DeeUK]

Thank you all so much for your replies. I really do appreciate them :)

I know what you mean, Mekasan.. the few people I've talked to about this, seem to think I'm quite mad for even thinking about having both boobs done away with. But I think it's something no-one can really understand unless they've been in that situation, or very close to it.

I was reading something a few days ago.. I don't remember what it was, or where it was now. But I remember the bit that said most women in the States opt for mastectomy, over lumpectomy.
It seems to me, living in the UK, that America in general, is much better informed, and frther ahead in this field, than the UK.. so that speaks volumes to me.

I see my onc tomorrow, and I WILL speak to him about it.
I do wish now, that I'd have opted for a mastectomy, when I'd finished chemo.
I have a feeling the onc's going to roll his eyes at me, and say I should've made the decision then, instead of waiting until after radiotherapy.
I don't think they quite grasp how difficult a decision things like this can be!

Thanks again, to you all :)

[mekasan]

Dear DeeUK

What I hear from your post is that you are concerned your doctor will make you feel bad for wanting a mastectomy now, after having gone through radiation. I understand that you recognize that a mastectomy now seems to render the radiation unnecesary. However, you should feel no shame for going ahead with one procedure and then recognizing afterwards that it just wasn't enough.

Chalk up your need to discuss a mastectomy to a "change in circumstances". That change is a result of
1. more time to think about your needs and better identify them,
2. more time to read and learn
3. having the radiation experience and feeling it may not be enough.

Consider yourself a changed person from the one who decided to dismiss the mastectomy option. Now you are a person who wishes to consider it. If your doctor cannot understand that, and still makes you feel badly, then just know the doctor is wrong. You have every righ to pursue the treatment that makes you physically and psychologically sound again. If some radiation got wasted in the process WHO CARES!!!.

Finally, you may find that the mastectomy is unnecessary in your case. For example, I decided, at first, to have AC chemo then Herceptin, no Taxol (or whatever the T is in the AC-T combo). My doctor did his homework and determined this was best. I finished chemo and began Herceptin. Months later, and an inch or so of hair later, I went back and asked my doc if I needed the T(Taxol?). I was concerned because I learned that most women have AC-T and I only had AC. Now, I had the choice back in Aug. 05. I already was through chemo and I was asking to start up again in March 06. I learned that because I was node neg I did not need the T. Because of the discussion, I feel psychological sound. Prior to that talk, I felt so upset that I had made a bad choice.

My position: Decisions are complicated. Ours tend to be life-preserving. The only one who has to live with them is you (us).

Do everything you can to take care of yourself.

Sincerely
Shannon