Update on my wife's diagnosis.

Swami7774 · July 2016

Friday I posted that my wife had just been diagnosed with breast cancer. We immediately scheduled a consultation with a surgeon from Dana Farber(and South Shore Hospital), Dr. Sunlit Nimbkar. To say this woman eased our minds would be the understatement of the century. She walked us through everything--what the diagnosis means, and what routes we have to fight it.

In summary, the cancer is clinical Stage 1(early). When she said "stage one", all 3 of us(my wife, daughter and I) burst into tears of (somewhat) relief. The tumor is about the size of a cherry. She is scheduled for surgery on 7/28. Following that, there would likely be radiation but--from what they can tell now--probably no chemo.

The type of surgery is in flux. Dr. Nimbkar says a lumpectomy appears to be the likely route, but my wife is considering a mastectomy--just to rid us of as much recurrence liklihood as possible. What are your thoughts on that?

Another note--I can't tell you how your responses helped me through the worst day of my life. You're all wonderful people and I look forward to your continued counsel as my family and I embark on this journey.

A light note: Dr. Nimbkar was adamant about one thing; I should STOP Googling "breast cancer" because it would scare me to death(which it certainly did last week). She said the only website worth its salt is Breastcancer.org. So I found this site even before she told me about it!

ElaineTherese · July 2016

Hi Swami!

Glad to hear Stage 1 here as well -- that means that your wife has an excellent chance of living for many, many years. As far as lumpectomy vs. mastectomy, that is a very personal decision that each woman makes for herself. Your wife has to consider her life and what matters the most to her.

I chose a lumpectomy + radiation because studies show that it is just as effective as a mastectomy. As you'll see on this site, women who get mastectomies can still face recurrence and metastases. No mastectomy gets rid of all breast tissue, and there is never a guarantee that cells haven't broken off from the primary lump to find a new home elsewhere. Also, mastectomies have a higher rate of complications, and this is particularly so if your wife does mastectomy + reconstruction.

I'm a mother of three kids (two with autism) who works full-time. I really didn't want to do reconstruction, given that it often requires at least two surgeries. Lumpectomy allowed me to retain the feeling in my breasts and gave me a small scar (no, it doesn't always leave women "disfigured").

Every case is different! Some women prefer to do bilateral mastectomies so that they never have to undergo a mammogram again (too much scanxiety). Some women have multifocal cancers, and have to get a mastectomy. Hope your wife figures out what she wants. Best wishes!

Sjacobs146 · July 2016

Swami,

So glad that you and your family are feeling reassured. There are many threads on these boards that discuss mastectomy vs. lumpectomy e.g. https://community.breastcancer.org/forum/68/topics/806074?page=1 . It's a very personal decision and it depends on what is important to your wife, the survival rates are the same. Good luck on your journey.

freak4fiber · July 2016

Hi I am wishing the best to your wife and family during this time. I sit here trying to make the exact decision that your wife is trying to make. At first my husband and I were all for the mastectomy. Get it out and make sure it doesn't come back. The more time I have to do research it appears that lumpectomy is a viable option also. I believe I will still go forward with the mastectomy. I am young now 45 years old and in good health and I believe my body can handle that surgery. In 10 years or more if it recurs I don't know that my body will be as able to recover as well. I have two tumors in two separate areas of the same breast so even though a lumpectomy would be an option it may be quite a large area they end up taking. I also wonder if a mastectomy with an early stage cancer might make you not need the radiation or chemo after the surgery??? Not sure but that might be a question for the doctor to assist with your decision.

Moderators · July 2016

Dear freak4fiber,

Welcome to the community. We are glad that you reached out here. Stay connected and keep us posted on how things go for you. The Mods

Swami7774 · July 2016

freak4fiber, the impression I got in our consultation was that a mastectomy eliminates the need for radiation. If so, that's a big plus.

mustlovepoodles · July 2016

All I can say is keep an open mind about the lumpectomy. Most women who have low stage cancer can safely have lumpectomy and radiation, rather than the more radical surgery. There are times when a mastectomy is a better idea, but if your wife's doctors are recommending lumpectomy there is a reason for that.

The thing about mastectomy is that it's forever. You can't turn back, and reconstruction doesn't look or feel like real breasts. It's a big-deal kinda surgery. You can always start with a lumpectomy and make a decision later to go forward with a mastectomy in the future. In fact, that's exactly what happened to me. I had lumpectomy, then re-excision to get clear margins. I was all set to start radiation when we found out that I had two gene mutations that caused breast cancer. Both breasts had to come off. I had a LOT of complications from the BMX. It took over 16 weeks to heal. I was not prepared to have so much trouble, physically or mentally.

Of course, the decision of which surgery to have is ultimately in your wife's hands. She is the one who has to live with her decision. I just want to encourage you both to talk about it and don't rule anything out just yet. Best of luck to you both.

Anonymous · July 2016

Chiming in.

The decision to mx or not to mx can also be looked at considering the TYPE of bc. I had ILC, which has a higher tendency to be multifocal (can be found in both breasts). Indeed, when I had my post-pathology review after my bmx, with my surgeon, he told me the pathology report showed hyperplasia in my good breast, which could have gone badly for me.

The hyperplasia never showed up on any scan, multiple mammos, us, and two breast MRIs. I was glad I opted for a bilateral--off with the bad and on to the good (life). Because ILC tends to hide from scans, I decided I couldn't stand the worry every time I had a mammo, US, or MRI, and decided just to get rid of the questionable tissue once and for all. I had 5 clear mammos, one every year, for five years--and found the lump in a random self- exam. Five mammos didn't discover the problem, because I had dense breast tissue--another problem and complication for accurate scanning reports.

I know this doesn't guarantee me protection from recurrence. What it does is give me peace of mind that I did everything I could, and that was offered to me, to protect myself from recurrence.

Claire

Obxflygirl1 · July 2016

Just a few thoughts. I had stage 1a and chose a mastectomy. I'm a worrier and I did not want to be always thinking of the next mammogram. Lumpectomy or mastectomy is a personal choice. The latest studies say survival is about the same, I believe. I had an easy recovery and reconstruction. I know I was lucky. What I miss most is having feeling in my breasts. I had skin sparing but when they take all the tissue and nerves, there is no sensation left. Some women do regain feeling but most of us do not. Would I still make the same choice? Absolutely, because I know me. Keep talking and asking questions and you and your wife will make the decision that is best for you. Good luck and keep us posted.

barbski60 · July 2016

I know how hard this decision is. I went for a BMX even though I was Stage 1B (tumor was 0.6 cm in one breast). It was found on a routine mammogram - thankfully I opted to pay for the extra $40 for the 3D and that is how it was found. I have dense breasts so I know it would be hard to detect anything. I had surgery on 06-24 and other than the 2 remaining drains, it hasn't been bad at all. I have to take naps during the day but my range of motion is very good and I can do some light housework (haven't tried cooking yet but I don't want to either). I'm 55 with 2 kids (18 and 15), 2 dogs and a husband. I work FT. I was given 6 weeks and will have to take another 6-8 weeks when I have my reconstruction in late Sept. I asked God to help me make the right decision. I did not want radiation so the lump. was not my first choice anyway. I would rather have the tumor out and not worry about it. I have been very fortunate in that I do not have any genetic markers, nothing in the lymphnodes (2 SE nodes were removed to see if anything was there) and had clear margins. No rads or chemo needed. I would suggest that if your wife does decide to have a BMX that she hire a personal trainer and work as hard as possible on her core and arm strength. I would also take a stool softner 5 days prior to surgery. I had to take about 3 heavy duty narcs after i got home (surgery was 4.5 hours - I got tissue expanders too) and I was in recovery for about an hour and was able to eat about 2 hours after I got to my room. I was home in less than 24 hours. I was walking around prior to leaving the hospital and was able to take a shower at the hospital by myself without a chair. Overall, I was very fortunate and would make the same choice. Good luck and God Bless.

ChiSandy · July 2016

Don't wanna be Debbie Downer here, but even BMX is no guarantee that there won't be recurrence....nor that you can even avoid radiation if the post-op surgical path report finds node involvement or tumor cells too close to the chest wall, muscles or axillary tail. It's basically a game of statistics. I chose lumpectomy + radiation after being given my options and odds via literature handouts and EMMI videos assigned by my surgeon. Deciding factors were that at 64 I was willing to live with a 6% rather than 3% chance of recurrence; small tumor size (about the size of my pinky nail) and tumor type (IDC, ER/PR+ and HER2- grade 2), no suspicious areas in the other breast, and the rather fortuitous location of the tumor in the upper outer quadrant of a very large and fatty breast. (A friend with DCIS chose BMX because her tumor was larger, high-grade, located directly behind the nipple in a small dense breast and multifocal--and she had suspicious densities in her “healthy" breast which turned out to be ADH). In other words, your mileage may vary.

I don’t find it all that onerous to have to get mammograms--helps that I have enough going on to take my mind off cancer (except for side effects of the meds I need to take for it--which I’d have needed even with a BMX).

Because of the seroma that filled in the empty tumor cavity (and the radiation that enlarged the seroma), my operated breast was actually bigger for awhile than its counterpart. It's reverted to its original size and shape (a tad smaller than the healthy one) of a year ago, pre-dx. Unless you saw the scar and the tanned area from the rads, you wouldn't know I had a lumpectomy. If the seroma shrinks further and, in turn, my breast does too, I might consider either reducing the other one (they're both too big--38 H or I) or getting a “shell" prosthesis to put in the cup. They don't make MX bras or prostheses that big--I checked.

BarredOwl · July 2016

Hi:

Sjacobs146 has posted a link to a great thread, that includes Beesie's informative post about lumpectomy versus mastectomy to which I link again directly. Please read it:

Lumpectomy vs Mastectomy Considerations (Jun 20, 2013 post from Beesie

https://community.breastcancer.org/forum/91/topics/806452?page=1#post_3598134

It is true that with a mastectomy, many patients will be able to avoid radiation. Unfortunately, in some patients, the post-surgical pathology (including margin sizes and lymph node status) does reveal findings that may appropriately lead to consideration of (or a recommendation for) post-mastectomy radiation.

Be sure to request copies of the report of the radiologist from all imaging to date for your records, as these inform the recommended surgical strategy. Please also request a copy of the complete pathology reports from all biopsies (not a summary), along with all related estrogen receptor ("ER"), progesterone receptor ("PR"), and HER2 test results for your review and records. With invasive disease, ER, PR and HER2 status should all be determined from biopsy tissue, if possible. The nurse navigator should be able to get you copies of all of these documents.

Patients receiving surgery first (with no "neoadjuvant" systemic therapy prior to surgery), should keep in mind that the surgical pathology (including results of any lymph node biopsy) will be used to determine actual pathologic staging. The totality of pathology results, plus other types of tests (in the appropriate case), will be used to determine the need for any further systemic treatments, such as chemotherapy; HER2-targeted therapy (for HER2-positive disease); and/or endocrine therapy (for hormone receptor-positive disease (ER- and/or PR-positive)).

For example, following surgery, with node-negative, hormone receptor-positive, HER2-negative disease and a "cherry-sized" tumor, the Oncotype test for invasive disease may be recommended to further inform decision-making about whether or not to add chemotherapy to endocrine therapy.

Hoping for the best possible outcomes for all.

Best,

BarredOwl

Blessings2011 · July 2016

RE: not needing radiation after mastectomy...

There are many very good reasons for having a lumpectomy, but due to the location of my multifocal (in many places) tumors in my left breast, I wasn't a candidate for one.

I chose bilateral mastectomy (with reconstruction) for my Stage 1A cancer due to family history, and the fact that my Radiologist was never comfortable ruling out cancer in the right side.

Even though they predicted that I was dealing with small, early tumors, I went into my surgery not knowing if I would need radiation or chemo.

If there had been any lymph node involvement, I would have needed chemo.

If the tumors were close to the chest wall, and the surgeon could not get clean margins, I would have needed radiation.

All these were unknowns until the actual surgery, and the final pathology report.

I was happy to learn that I would not need either chemo or radiation, just five years of an oral aromatase inhibitor drug.

LoveMyFamily · July 2016

Hi, swamii.... I'm happy to hear you are all breathing easier... i, too, had a choice of which type of surgery to have... for me, that decision was easy... because I have a blood condition that makes more involved surgeries risky for me, I chose lumpectomy with radiation. Good luck to your wife/you as you weigh the pros and cons.

grainne · July 2016

swami7774 what very reassuring news! I had a lumpectomy and rads because that's what the medics recommended. I assumed they would err on the side of caution and if they felt a mastectomy wasn't necessary then it wasn't. The operation was virtually painless. I was back driving after 3 days and back at work in a week . I worked part time through rads which were more of a nuisance than anything else. I was fit and healthy before diagnosis and i still feel like that. I'm not sure if i would feel the same if i had a mastectomy but i just don't know. By far the worst thing to suffer for me is the anxiety about recurrence. I am 6 months post diagnosis and I'm not too bad now. Ive been exercising for about 2 months and i really do feel better. I only do a fast half hour walk every day but i feel much more cheerful and positive and i recommend it to anyone. Let us know how your wife gets on . She already has the massive advantage of a loving and supportive husband.

NoWhyToIt · August 2016

So happy to hear your staging news! That's great as far as cancer goes. You will all get through this.

Update on my wife's diagnosis.

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