2nd time around, need advice!

bojo

I am struggling with the masectomy decision. This is the second DX although different side.  My question is how many women who have been diagnosed a second time have decided to keep their breast?  Should I have single or double or neither and hope it doesn't come back ever again! I really don't know what to do.  My fear is the recovery from the Masectomy(s). 

9911

Hi Jo-

I didn't keep them ... I had BMX and DIEP & Muscle-Sparing Free Tram.

I had Lumpectomy both time in the beginning before chemo. Did the chemo & rad the first time and chemo this time. I was offered rad or MX this time. I didn't want rad ... it would be on my left side and I also didn't want to do the driving for 33+ days to the hospital. It was time to let my breast go. I did all I can to keep them. It was time for BMX with free flap surgery. My body looks Iike before I had kids now. The scars are not pretty. I had a few hard days in the hospital without the right pain med. The first week at home was hard on my husband ... he had to get my med, food & whatever. Once I started walking again (was doing about 4 miles before the 2nd DX) ... everything got better for me and him.  I had the surgery in late Oct. I'm almost 100% back to doing everything I was doing before the 2nd DX. PM me ... if you want more info ...

Best wishes ...

-LA

bojo

Thanks LA,

I am struggling because the amount of invasive cancer was "on;y" 3mm and no nodes.  I will send you a PM asking you about the recon.

Thanks

Jo

Annie62

Jo, It's terrible to have to make these decisions, isn't it?

I had a recurrence on the same side and an inoperable lymph node. I opted for bmx with no recon. The worst period for me were the weeks where I was choosing whether or not to reconstruct. I have no regrets about my decision thus far. I am 1 year out for the bmx. if I ever change my mind I can opt for recon in the future. Given that I am stage III, I wanted to save all of my body's energy and immune strength for fighting cancer, not recovering from additonal surgery, especially while undergoing chemo.  I opted for bmx so I could go flat which I do most of the time. I do wear prostheses about 1/2 the time for work and when I'm dressed up to go out. They are pretty comfortable and look fine. 

 The decision got easier as I winnowed down the options. DIEP sounded great but the thought of being under for so long freaked me out. I don't do well with anesthesia. I didn't want to cut muscle so tram flap out. That left implants. I had rads in the past so there was a concern about failure and I just feel like it will be easier for any future cancer to be found without the implants despite what the docs tell me. DH preferred no recon as well so that helped with my decision. 

 I'll admit that it feels weird in the intimacy dept having no chest but DH doesn't seem to mind. A lacy cami helps out in that dept. 

 Good luck with all your treatments. I'm sure whatever decision you make will be the right one for you.

Annie 

Annie62

Jo - I realized I didn't address your concern about the recovery. I found the recovery easier from the bmx than from the lumpectomy and axillary dissection the first time around. I've come to the conclusion that most of my pain was related to the axillary dissection.

 I had very little pain with bmx and was on tylenol within a day or two. I took it easy for a couple of weeks and didn't work for 3 weeks. (Christmas was at the end of this period and if it wasn't I probably would have gone back to my sedentary job a couple of days earlier.) I also worked from home for a bit. The commute on public transport was a bigger inconvenience to me than doing my job.

 I have an 8 year old at home and was able to handle this. Someone with a baby/toddler would likely need some help for a week or so.  If you don't have a cleaning service, it's a good idea to arrange for a couple of weeks if you can afford it.

 Annie 

bojo

Thanks Annie,

I think the reason that keeps popping in my head is what the MO PS RO have said, "we got it very early" "it's ONLY" 3mm"  you don't have to do chemo. you are er/pr + it's HER2 -..

And the worst part is my family and friends just don't get it why i would EVEN think of a masectomy, because of what the doctors are recommending. 

I am 46

I HATE HATE THIS!

Racy

bojo, I am not in your situation (thankfully) but with such a small cancer and having other treatment options available, it really comes down to what you want.



Do you prefer to keep your natural breast and continue with regular monitoring or would you be happy to live without a breast and not have to go for regular scans?



What is your local recurrence risk with lumpectomy? I believe it's about 1 % with mastectomy.



Are you saying that you would prefer the mastectomy if the recovery was easy?



You need to answer these questions for yourself and the answers will guide your decision.



There is also info on this site about the pros and cons of each option. Check the treatment menu at the top of the home page.



Good luck with your decision. Hoping it's right for you.

Faith316

It is a hard decision.  But, I will tell you that for me, the recovery after the mx was easy.  I did not need any pain medication in the hospital, nor when I went home.  (I only stayed overnight although she actually told me I could go home the same day as the surgery if I wanted.)  It really was an easy recovery.  (I had previously had a lumpectomy and axillary node dissection a year and a half earlier.  I had another node dissection when I had the mx.)

jennyboog

I am not trying to sway you, just telling you my experience   I had no choice I had to have a masectomy and opted for a BMX and I personally have no regrets.  The healing was very easy for me, I was just a little sore but it was nothing like I thought it would be going into it.  My shoulder hurt really bad the day after surgery (still don't know why) and that hurt worse than the BMX & ALND.

Annabella58

hi bojo;

chiming in from experience.  I had "only DCIS, no nodes" the first time around, lumpectomy, radiation, 5 years of tamoxifen.

They missed something, evidently as 6 years of mammos were clear.  Then the first MRI I had, whammo...a 1.5 cm lump, same breast.  I had to get skin sparing mtxmy, recon, and now have a barbie boob w/out a nipple, (finishing up soon) and left with huge original DD girl on which I have to get yearly MRIs and fight like crazy with insurance company to do so.

I wish, wish, wish, I had done both in the beginning.  I most likely would never have seen this again, never had to do chemo the second time, and had a matched pair.  Now I must do a prophy (or well advised) and even if I was not advised to do it, I am.  It's not worth it to me.  The terrible stress of worrying, every bump and lump, the MRIs yearly, the stress of mammos...give me a brand new non droopy pair any day.  I will match, I will be much safer and I can finally go on with my life, not feeling like a ticking bomb.

If this sounds a touch dramatic, it's not meant to be.  It's just the way I feel about it.  It's not a fun thing to do, and yeah, some sensation will be gone, but to me, th e anxiety was not worth keeping my original (not too good looking either at 56) breast.

Good luck whatever you do.

Annabella58

...and bojo....this is your life, your decision.  Tell the family and friends to keep opinions to themselves unless supportive.  They mean well, but it's not helping you.

topless

I had a BMX and it was an easy surgery.  I was only in overnight and never used any pain meds.  The surgical areas are still numb after 5 months.  I think the numbness is the reason for no pain initially.  The drains were a nusence and the sites got a little sore after 2 weeks.  I had fluid drained off twice and, again, because of the numbness I hardly felt the needle.  I am so glad I don't have to worry about breast cancer coming back and I'm glad I didn't torture myself with months of chemo and radiation and the possibility of recurrance.  Once I got the diagnosis I just wanted it gone so I could get on with my life.  No regrets.

She

You have to do what's right for you.  I tried to get BMX the first time I was dx, then I tried again the second time I was dx (new primary).  I was flatly refused.  When I had the #3 primary I said "I'm driving the bus now, if you don't like it, then get off" and insisted on/then had BMX/DIEP.  If someone had listened to me the first time I probably wouldn't have had #2 and #3.

While your BC was small, it was Grade 3.  That alone would have me considering a BMX.  But that's me.

Recovery from BMX/DIEP was difficult, but I'd do it again in a heartbeat.  If you look at recovery as a finite period of time, it's easier to handle emotionally.

Karen3

Hi there

I have just had a bilat mast for second BC in opposite breast. For me it was the right thing to do although I had to reason this out for myself. Finally I was 'at peace' with the decision. I had my operation on 8th Dec without reconstruction. I have learnt that I am more than my breasts and those who love and care about me still do. I feel as attractive as I did before (ironically as I really liked my firm 34E boobs) but my prosthesis are great. I view my scars as battle scars! My surgeon said that my breast tissue had 'gone bad' and felt that another breast cancer within two years of my lumpecomy for the first (4th Jan 2010 after neoaduvant chemo that didn't work) meant that there was a strong chance it would be back again and again. I can honestly say that I am totally at peace with losing my breasts. My life is more important and I want to be around to see my son through university etc.

My recovery from the operation was fairly swift and the operation itself was easier than I had anticipated. I think a lot of this was to do with the fact that I did not have reconstruction. If you need any more info then please feel free to pm me.

All the best to you

Karen X

horsegal13

I just received news that I may have cancer in my good breast. I will know on Friday. I had a BMX on my left side 2 years ago. Did reconstruction twice, the first plastic surgeon was awful. I found a good plastic surgeon who redid it all in Nov. 2011.

Now I have to decide if it is cancer, do I want reconstruction after a mastectomy again? Or just take both off. I am leaning towards taking both off. I was 47 when I had my first surgery, am now 49. I just don't think I can take this again. I hated the tissue expander,and fills. I am also undecided and lost at this point.

SelenaWolf

It is such a personal decision and do not let anyone criticise you for trying to sort through your emotional feelings about your surgery options.  They are not their breasts nor is it their fight.

I opted for lumpectomy/radiation on the advise of an incredibly well-thought of surgeon who did warn me that "... if I get in there and don't like what I see, then I will do a mastectomy..."  I ended up with the lumpectomy and I am comfortable with that decision.  My understanding is that the lumpectomy/radiation gives me the same survival benefit of a mastectomy, but a slightly higher risk of recurrence (1-5% mastectomy vs. 5-8% lumpectomy/radiation).

I wanted to preserve my breast; however - as I was telling my husband the other day - if I relapse or if I develop a new cancer in the other breast - I would, probably, opt for a double mastectomy.  Being through this once is bad enough and I took the conservative approach this time based on a number of personal factors (i.e., small, dominant lump, no clinical evidence of metastasis, family history, etc...); if it came back, I'd go with the "big guns".  But it's a personal choice.

My thoughts are with you as you make this difficult decision.

greenacres

As said above, it is a very personal decision.  My decision, if I were diagnosed again especially with being Her2+++, I would have a double MX.  No question.  Take the time you need to decide and I wish you the best of luck.

rsg

 I too was diagnosed more than once.  I did go with masectomy and the recovery was not as bad as I thought it would be..You may have already had your surgery but I am in Boston too PM me if you would like..

CatFromFL

I am sure that you have long ago made your decision and had your surgery.



I am now faced with this same decision. I have decided on another lumpectomy.



I have spoken to 2 surgeons, my oncologist and the radiation oncologist. They all echoed that in my particular case.... That is IDC, 1 IDC lesion,ER positive no evidence of node positive disease, no family history that they advised lumpectomy with radiation.

They all stated that my long term survival statistics were the same for lumpectomy w/rads vs mastectomy.

I asked them why so many women opt for mastectomy. They said that they do it for all different reasons but that some do it for security that is simply not based on fact, more on their "feelings".

They explained that. Breast conservation with rads has the same long term survival statistics in cases similar to mine.

Now this in not people with multiple lesions or lobular or otherwise different pathology. Its in my specific pathology details only. So i am opting in another lumpectomy and radiation. Perhaps they will match once more.

So if someone new is reading this, my advice is to discuss your treatment plan with all of your healthcare professionals after you know the pathology from all of your tests. Oncology nurses well versed in Breast cancer and all of your physicians an help you with YOUR treament plan.

Learn that there are 3 ways breast cancer occurs a second ( or third) time.... As a local recurrence in the same breast, as a distant recurrence (metastsatic disease) or as a new primary. Make sure that you understand the differences.

Best of luck to all making this decision.

Cat

bojo

Hi Everybody,

Sorry for not responding, but i just saw all these post since the new version of the discussion board.

I decided to go the lumpectomy and rad route.  to be quite honest with you i don't know why. lol, i guess in the end i was afraid of the recovery of a bmx.  But one of the reason, i did choose this was my MO did say to me, it doesn't mean you can't choose the BMX in the future.  My fear was that it would not be covered under insurance if i did in the future.  So hopefully the Tamox will help this time around.  I didn't take it the first time around, because i "only" had DCIS first time.  I wish i had.  oh well, can't think about the past and have to move forward.

Good Luck to everyone who has to make this decision!  I will say OCT, NOV and DEC of 2011 were the worst months of my life, trying to make that decision. 

Jo 

teach4kat

I don't know why that I am responding, because our situations are so different.  But I am worried and concerned.

First, I had breast cancer on the rght side, 16 years ago, and chemo and radiation.

the last two years I was worried about the rght breast... it didn't look the same, the scar from radiation inside the breast felt much larger and harder, and my whole rhgt breast took a completely different look in skin and shape.  Then I showed two dr. the breast, and pointed out two raised pea-sized lumps.  No response.  Finally, found a breast surgeon who looked at a mammogram, ultrasound, and said it warranted MRI.  I know it is going to be a mastectomy and maybe worse.  However, I do have a cirrhotic liver, and was advised to not have any surgeries, as it might mean a liver transplant( stage 4).  How did I get the bad liver?  Through chemo and tamoxifen .... two major hits on the liver.  I never had a drink in my life or abused with drugs,medications, herbs, or vitamins.  Just the way it is... I had to accept it all.  My liver does act up at times and gives me hepatic encephalapathy(sp?) Not nice.  Now, I have to think on my own.  My husband and sister give me too much stress, and I feel quite alone. This whole thing ( tests, appts. )  has taken sooooo  long so far, just like the original episode with br/cancer.I get edgy and anxious over everything, such as ( family and friends, and dr's) responses, conversations that are meaningless. 

I guess I have to accept the journey.  Keep a journal.  Pray, exercise.

netty46

Was this recurrence or new primary? What do docs say? I was out 12 years and just came back to my reconstructed breast. They say possible recurrence but treating it like new primary. I would like a definite answer from them.

Link

I also am starting round two. I'm scheduled to have bi lat mastectomy on Monday. Really scared. Not sure about taking both breasts.

bojo

Hi Link,

If i were to do it again, i think i would do the BMX, i just keeping worrying,  not a day goes by that i don't think about my decision.  But for now i live with it, but i don't rule out a BMX.  May end up doing just for my sanity.

BOJO

bak94

Hi bojo,

I was diagnosed for a second time in March of last year. I had lumpectomy the first time and this time I did a bmx because I found out I am brca 1, so my situation is very different. I jst want to say that if I had a choice, I may have done another lumpectomy. I had bmx a year ago and I still have issues. I have not had reconstruction yet. I have very bad tightness that will not go away even with physical therapy. I am always aware of it and it has affectected my quality of life. I still worry about recurrence, either on the chest wall or a distant place, I just think the worry will be there no matter what you decide to do. I am so glad that most do not have issues with bmx, unfortunately some of us have continuing issues. Oh, even though they tried to kill me, I still miss my girls:(

bluepearl

My second was contralateral, 7mm. I opted for sentinel node biopsy as aux. dissection left me with chronic pain. I am a little over a month from the second mastectomy and pain is far less than the first......DO your exercises! Most pain problems originate with aux dissection and radiation. My concern was TWO bad arms and had to go with the least damage (and there ar no guarantees, either) and do the best I can with what options are available.

teach4cat: that sucks big time but the liver is capable of regenerating after injuries. Let's hope! (I found out I have lots of liver cysts AND fatty liver.....do not drink, take drugs or smoke) 

I don't miss my boobs actually. Not that I'm aware of anyway. They look like two smiley faces. 

Padiddle

My situation was different than yours.

2000 right side breast cancer, stage IIB with mastectomy,

2009 metastatic disease

2011 left side breast cancer opted for mastectomy

Am comfortable with the decisions for mastectomy on both right and left.

Anonymous

Hey, all. This is my second time around, too. Just received my initial dx yesterday: IDC, probably stage 1. I will get more details after the weekend. Anyway, this discussion thread has been very helpful. My initial response (after mammo found "something", before dx) was that it WAS cancer (again), and that I would want to be more agressive in treatment this time. After reading all the posts on this thread, I am happy to learn that so many of you that chose bilateral masectomies had relatively "easy" recoveries. I was also happy to hear that some of you still decided on the lumpectomy. As pointed out earlier, having a lumectomy now does not mean you can't have a masectomy later. (Of course, do we want to do it again? NO!) On the other hand, there is a thread for women that have had masectomies and still get a new bc or recurrence. So, having a masectomy now doesn't mean you won't be doing this again later.

Anyway, I haven't made my decision yet. Need to meet with the surgeon and see what he recommends. I may also try to get a second opinion from my onc dr., as suggested by CatFromFL.

My breasts are important to me, but I want to make the RIGHT decision. Of course, I'll never know 100% if the decision was "right". I have resigned myself to another summer at least as bad as 2012. It all depends on what we decide to do.

I know I am rambling, but I also know you all understand that my brain can't seem to stay focused on one particular topic right now. Always jumping around to what if this, what if that...

Thanks so much to all of you for being willing to share your stories. I know that you know this, but: It helps. THANK YOU!!