diagnosed today, lumpectomy or mastectomy

LovebeingNana

Marie,

When I went to my surgeon I told them I wanted a Bilateral Mastectomy, they looked at me and said very emphatically "That is overkill and not necessary." Then she said "You know I can't put them back on once I take them off." I was determined but was told I needed to go speak to a radiation oncologist, a plastic surgeon and a geneticist. They had all been in conference with her before I met with them and all actually initially tried to persuade me to have lumpectomy only. After I saw all of them I called the surgeon back and said if you don't want to do the surgery that is ok, I will find someone who will be willing to. That ended that.  Once I talked to my oncologist he confirmed my decision (especially due to an auto immune disease I have that sometimes doesn't do well with radiation) so I knew it was right. This is your decision and you have to live with it. So do your research, talk to people you trust and then find someone who will hear you and treat you accordingly. Best wishes to you.

Infobabe

Marie, I am informed that there are circumstances whereby radiation is required in addition to a mastectomy.  This issue is beyond my expertise.

Daninayd

Hi Marie, when I was originally diagnosed with breast cander, two small tumors were found in my right breast after biopsy. The left breast was cleared as being "healthy". My husband is a physician and he insisted on having a MRI to double check whether the ultrasound and mamograms have found everything. The MRI found extensive LCIS and DCIS. My husband and his colleagues convinced me to have BMX as the best choice for me. I had a few additional biopsies, another MRI and felt confident that the BMX was the right option for me. I am glad that I did it because when the patology report came back, both breasts were very diseased. They both have 2 invasive tumors each and many areas of LCIS, DCIS, ADH and etc. I cried when I read this report. It was horrible.

My onc was sure that I would need chemo and radiation but my nodes were clear and my oncotype was 4 (very low score). I was lucky to skip the radiation and the chemo. The reconstruction process was long, 7-8 months but my results are very good. I had nipple sparing mastectomy, however, the patology report found DCIS in the right nipple and areola. I had to have it excised and reconstructed, which was not a smooth recovery. However, I feel completely normal and healthy.

I agree with one of the earlier posters that once the breast is removed it cannot grow back. You may be fine just with a lumpectomy. Make sure that you are thoughroly evaluated and nothing is missed. In my case the doctors missed both tumors in my left breast.

I hope that you make the right decision for yourself. Good luck with everything.

 

ziggypop

Hi Marie - I think that things have gotten a little confused here because the way that this thread has played out it makes it so some posters think your cancer is what is called 'in situ'. All of this is hard to grasp at first because there are actually a number of different kinds of BCs. 

It sounds like the doctor believes that the cancer you have is ILC - invasive lobular cancer. It ALSO sounds like he may be concerned that you have some lymph nodes involved. IF what you had was 'in situ' then the doctor would not have told you that you need chemotherapy. One reason that a doctor might lean towards a lumpectomy when he knows that you are going to need chemo is that chemo is a systemic treatment - it will be targeting cancer cells anywhere that they may be in your body - including the opposite breast, the breast which has cancer, etc. This lowers your risk, of course of having cancer occur in the other breast (which women often remove for symmetry when having an MX). An MX is not an insignificant surgery - there are things that can go wrong, there's a much greater risk of infection than with a lumpectomy, so there may be reasons that your doc is pushing one way, but you need to ask him why this is the approach he is recommending. I'm not saying it's wrong - not at all, just that you need to understand his reasons & so that you can consider the validity of them. You might also want to get a second opinion. The only other thing I wanted to suggest is that you for sure have somebody go with you to your appointments and take notes. Sorry that you are going through all this. 

msphil

yes it is a personal decision and I was planning our wedding when diagnosed and didn,t want to go into a new marriage with one breast but thank God my husband wanted me to live more than have two breast I opted for a L mast, and I am now a 20 yr SURVIVOR( Praise GOD). Hugs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! msphil(idc,stage2,0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen)

maltomlin

Hi

Yes, it's a very personal decision......I've known plenty of women who had the mx because they couldn't stand the thought of cancer in their breast.........I was dx 6 years ago and asked the surgeon 'what would you recommend if it was your wife?'.......a WLE was the answer........he said 'if it comes back then it's another lump' but after a mx it's far more difficult to treat...........I did the WLE and have not regretted it for a minute............

AlaskaAngel

Unlike what appears to be the majority, I have never once worried about recurrence and just caved in to some of what was recommended at the time (2002), out of lack of confidence in my ability to "get it all straight" in my head.

Because I was a "perfect 36B" at age 51, I kept my breasts in the false belief that mine would not age prematurely. I had a lumpectomy.

I got through CAFx6 and then IMRT rads. And I even did 1 3/4 years of the recommended 5 years of hormonal therapy, but I then dropped out entirely and refused to switch to an AI.

I apparently fit the description of the highly HR+ who probably gets no benefit from hormonal therapy. I remain NED at 12 years out.

My breasts are now very annoying as they droop and I have a constant unpleasant skin rash under them. They have zero romantic value and no sensual capability. And there is no insurance that will pay for them to be removed, now. I am 63.

 

msphil

as everyone is different I found my lump in the shower while I was making wedding plans, and I decided on  L mast even though I was getting married, I wanted to not worry about going back again later for a mast if I had only gotten the lumpectomy, I am now Praise GOD, 20yr SURVIVOR, the decision is yours.  msphil(idc,stage2 0/3 nodes, L mast, chemo and rads and 5 yrs on tamoxifen)

jessica749

What's a "WLE"??

Anonymous

WLE-----may stand for wide lumpectomy excision.   (my lumpectomy was also called a wide excisional biopsy; surgeon said they use those 2 terms interchangably)

anne

sandra4611

I'm 65, have nice foobs and don't have to wear a bra for the first time in 52 years!

Itsawordnotasentence

I was diagnosed last Friday (Good Friday) with DCIS stage 0 in my right breast.  Surgeon recommends a lumpectomy followed by radiation.  I too initially said I wanted a double mastectomy (immediately) and would prefer 'one stop shopping' and to undergo the reconstruction at the same time.  I also have Rheumatoid Arthritis and therefore was encouraged by the surgeon to get my Rheumatologist's opinion considering my autoimmune disorder and the risk of infection with the more invasive surgery.  It appears, based on my limited knowledge and research thus far, that a double mastectomy offers the greatest percentage of protection from reoccurrence.  Any and all input is greatly appreciated.

Infobabe

pookie, what is the size of your DCIS?  I had only a lumpectomy, no rads in 2012.  3 follow up mammograms are all good.  I didn't make these decisions on my own.  I also had a second opinion from Dr. Michael Lagious, expert on DCIS.

Renee51

Pookie2, I have same diagnosis. My oncologist said that because i have "solid cribiform type" it is "worrisome." she said it was my decision either way, but she also said she was concerned about what else is there. She said, many women actually have more areas that may not show up on mammo yet. I just could't live with the fear of having to relive this nightmare over and over. I decided on bmx.

Ariom

Hi Pookie, I am so sorry you're in this situation. I just thought I would venture in here and throw another option into the mix. I too have Rheumatoid and have been medicated with Steroids for about 18 years and also did 7 years of Methotrexate for it. I've had several hand a wrist surgeries for it too.

I was Dx with DCIS and the lumpectomy and Rads was offered as my first option. I had what I would say were, extenuating circumstances, in that, I also have asthma and didn't really want to have to have the Rads if I could avoid it. Add to that, my husband is a C5/6 Quadriplegic from a hang gliding accident  and we live in a small coastal town several hours from the nearest facility where I could have my 6 weeks of rads. I would have needed to live away from home for 5 days  week for 6 weeks to have that treatment. So, for me, the decision to have a Umx and SNB, wasn't a difficult one. I was, of course aware that there was no absolute guarantee that I wouldn't need Rads after that Mx, if anything was found that would necessitate that treatment. 

In saying that, after researching, I couldn't in all good conscience, remove my healthy breast. For me, although the Lumpectomy was probably the better option, for my actual Dx and I would have avoided the SNB with a lumpectomy. I have not regretted my decision to do the UMx, but I didn't do reconstruction and don't ever plan to.

I am now almost 16 months out and have had 2 follow up appointments with my Surgeon and my 1 year Mammogram. All was good, and the fear I thought I would continue to feel  after I had my surgery hasn't been an issue at all.

There is some really interesting information on DCIS available to read on these boards, all put together by one of our members Beesie. I would really strongly urge you to  read all you can, before you make the decision to have a BMX. It is a big decision and a really big commitment to do a BMX and reconstruction. 

I wish you all the very best with whatever decision you make!

sandra4611

Ditto everything Ariom said. There is no right or wrong decision but you have to make SURE you understand everything before you decide. Everything has consequences and side effects. It's also crucial that you know what's going to happen AFTER the lumpectomy or mastectomy. Go on the radiation thread to see how the women there are handling the challenges and check out the threads on tamoxifen, AI's, and Herceptin. There are threads on living with a single mastectomy, threads on reconstruction, others on no reconstruction, several on lumpectomy and lots on chemo.

If you research online, be aware that MUCH of the info is old and out of date. Even some information just a couple of years ago is no longer true because of ongoing research and trials. I did lots on online research but focused ONLY on the websites from big reputable breast cancer programs of Johns Hopkins, M.D. Anderson, Mayo Clinic and Cleveland Clinic. I looked at statistics from the NIH as well, and found their breast cancer algorhythm so valuable. It was great to find out that my oncologist used it too. Good luck. 

Renee51

Sandra4611, 

I see you also had tissue expanders and later implants. Can you tell me what was the most difficult part of recovery? I have read some of the threads and women talk about not being able to raise their arms, chest tightness, etc. Were you unable to use your arms? I will be meeting with someone wednesday before I am discharged about exercises. I just not sure what to expect. Any info is appreciated. 

sandra4611

Renee, I had permanent implants put in at the same time as my double mastectomy. Because I am allergic to narcotics, I can only take Tylenol for pain, but even so, it wasn't bad. Unfortunately someone in the OR must have "shared" their germs with me because I developed an infection within hours of going to my room on day one. (Fortunately that rarely happens so women should not be overly concerned.)  The infection caused a lot of damage to soft tissue and muscle under my arm plus skin on the outside of my left implant. On day 14 I went back to surgery to have the necrotic tissue removed, the left implant removed, and had a TE put in on just that side. The other side was fine. The TE experience was not bad at all. I had a tight feeling in the evening after a fill but Tylenol before bed worked fine. Only at the very end with the final 60cc's did the TE cause pain after a fill. I had the exchange to implant three months after I got the TE. Exchange surgeries are universally described as a piece of cake and many are done on an outpatient basis.

Since then, I've had another surgery due to the damage caused by the infection and will have the final repairs in June. None of this was because of the mastectomy. I would have had the same infection damage if I'd had a lumpectomy.

 My plastic surgeon has few restrictions, unlike others I've read about. I was allowed to shower within days. It is up to me if I wear a bra or not. If I'm exercising he advises a sports bra but the rest of the time it's my choice. He said I shouldn't raise my arms above my shoulders until he gave me the ok. Since part of my reconstruction has involved repairs to damaged muscles, it results in a longer period of restriction because of the internal stitching. Most women begin stretches in two weeks. 

Renee51

Thank you so much Sandra 4611! I think I am ready to do this thing!

jramick

Like Jessica stated in her posts, my onco also told me that survivor rates and recurrence rates do not change with lumpectomy vs mastectomy.  I was Triple Negative stage 2 with no node involvement.  Your doctor's should be able to tell you in your own situation and dx if this is true.  I just made up my mind to do lumpectomy but firmly decided if the cancer ever returned then I would do a mastectomy.  It's a hard decision and very personal one. Good luck!

Anonymous

Hello Ginafish,

We cannot really dictate what you want. It's your own opinion. But, I suggest you should visit a doctor for accurate advice. Okay? I know everything will go well after that. Be strong!  

Olaf

Pookie2- I was diagnosed with DCIS and also have RA. I control my RA with diet. After getting a 2nd opinion, I decided on a mastectomy. I researched radiation and tamoxifen just as I had researched about RA drugs. I didn't like what I read. As others have said, a mastectomy is no small thing either. I am 4 weeks post operation. I am swinging a golf club, walking and will go back to spinning next week. The TEs are uncomfortable but not so much that it restricts me. I have recovered ROM in arms but still feel tightness. But it is only 4 weeks. I feel very fortunate that I didn't need radiation and tamoxifen. My husband also researched and we talked over my options. Having him there helping me along has been an inspiration. You too will come to YOUR decision.

atanea

Hello sandra4611,

I read in your post: "The oncologist said there is a greater chance of me developing leukemia from Tamoxifen than it helping me in any way" 

Where did your oncologist got that information? I have been researching and can't find any link. I'm curious because I was diagnosed with breast cancer a year ago, had a lumpectomy+rads (no chemo) and was taking Zoladex&Tamoxifen for a year when I was diagnosed with acute leukemia. The big suspect is rads, but who knows...no one is going to convince me that this was just a coincdence...

sandra4611

My onco is also a hematologist and has published and lectured on the topic of Tamoxifen. She says there is only a 5% chance of developing leukemia but for me, since I only have a 1% - 2% of a recurrence and at best, Tamoxifen can reduce your chances up to 50%, that would bring me down to 1/2% - 1% chance of recurrence. My chances of leukemia are higher so no hormonal therapy for me.

jessica749

NO offesnse Sandra4611 but while there  is much I don't know,  I do find what you say hard to believe. I would dismiss it, frankly, as your "oncologist" and "Hematologist" are anonymous, what you are repeating is quite second hand....  Courts of law don't admit hearsay, for good reason. In theory, their rules aim to seek the truth.  

If you'd like to inform with your post then please do provide a citation to the study. Thanks!

sandra4611

Jessica, there are numerous studies and it doesn't matter to me if you believe it or not. This is what my doctor told me as her reason why she wasn't recommending Tamoxifen for me. The chances of me developing leukemia were more than the potential help it could provide to me. I just Googled Tamoxifen and Leukemia and several pages popped up.  I don't have to defend myself and unfortunately do take offense at your words which are harsh. Good heavens, BCO is where we should feel comfortable sharing our thoughts, not duck accusations or feel compelled to defend our doctors' positions. I just read a post on another thread from a woman who insists that moderate exercise 5 days a week reduces the chance of recurrence of breast cancer 42%. Do I believe it? No, but I'm sure not going to demand that she produce proof!

EVERY treatment has side effects so the fact that Tamoxifen has some is no surprise. Our doctors just have to weigh the good with the bad and decide if the risk is worth it. For me, it isn't.

Beesie

Sandra, I would like to see the studies too. 

You said that you were told that "there is only a 5% chance of developing leukemia", but there is nothing "only" about a 5% risk.  Relative to the rate of leukemia within the adult population, and relative to the benefit that most women get from Tamoxifen, a 5% risk would be HUGE.  I'm guessing that's why Jessica reacted as she did. 

I have done a ton of reading up on Tamoxifen side effects, and while it's been some time since I did my reading, I don't recall ever seeing leukemia listed as a possible side effect.  I'm certain it was never listed as a significant side effect or risk.  Doing a quick check now, the only place that I found a reference to leukemia as a possible side effect was one report that mentioned that of 8,671 patients who took Tamoxifen, 5 had developed Acute Lymphocytic Leukemia.  That's 0.005%.  Of those 5 patients, 3 had had chemo and leukemia is a known side effect of chemo (although at much less than a 5% rate).

I appreciate that on this board people often say things without providing any back-up or support (and personally I am very frustrated by the amount of misinformation and bad information offered up here), however I think your statement about Tamoxifen and leukemia is quite different than someone saying that "moderate exercise 5 days a week reduces the chance of recurrence of breast cancer 42%". I doubt that statement is true, but if readers choose to believe it and exercise regularly as a result, they certainly won't be harming themselves and they will in fact be doing something good for their health.  But if someone reads this thread and believes that there is a 5% risk of leukemia from Tamoxifen, it might lead them to pass on a treatment that they really need, one which could possibly even save their life.  So I think getting the facts right on something like this is pretty important.

(By the way, I too got pages of hits when I Googled "Tamoxifen and Leukemia" but
every article I checked was talking about chemo and Leukemia. If the
word "Tamoxifen" was anywhere in the article, even if it not connected
to the discussion about Leukemia, the article would nevertheless come up
as a Google hit when you search on those two words.)

jessica749

Yes thanks for explaining myself better than I could, Beesie.  And in a nice way. 

I didn't mean to make you, Sandra , defensive but there is something very serious about saying a widely recommended therapy - Tamoxifen - causes leukemia in 5% of the people who take it.  So serious in fact that it made me want to see a reference.

Feel free to post whatever you want but  others read and may react to what you say. I'd say your statement has the potential to ring above- average on the proverbial  freak-out - scale.  The more alarmist the statement- the more serious- the more likely you'll get a question about it. Atanea must be wondering if there was info out there her doctors didn't know or kept from her.... Just trying to get this made clear - if there is info out there, point us to it. If it's just your opinion and belief, that's fine too, let's just be clear what it is.  (I was ready to completely ignore your post until Atanea added on to it.)

I like to share info (rumor and gossip too I admit.).  and the source, etc.  Backing up what I say is more second nature to me- the way I discuss things and learn/evaluate info  - not an offensive challenge.