reconstructive surgery?

karen2757

I am facing a double masectomy,I'm 54 and also have blood clots,so tomoxifin is risky for me to take- question...how do you feel about reconstructive surgery- I'm not sure I want to go through a second surgery, my long term boyfriend doesn't care, just wants me healthy....thoughts?

HantaYo

Namaste!

Karen:  Having surgery when you have a history of blood clots is a serious risk for you to develop blood clots again.  (I am an RN who works in pre-op and recovery and we evaluate every patient for how high their risk is for developing blood clots).  We put TED elastic stockings and bilateral lower leg sequentials on every patient unless they have a contraindication and will give heparin before surgery in some cases.  I was high risk also, even without a history of blood clots, so the DR. had me wear the TED stockings for a full week after surgery and also had me give myself injections of Lovenox at home for one week.  While in the hospital they gave me heparin just prior to surgery and then every 6 hours.  HOWEVER, THE SINGLE MOST IMPORTANT THING FOR YOU TO DO IS MOVE, MOVE, MOVE, GET UP ASAP AND WALK, WALK, WALK.  Inactiviy increases the likelihood of developing clots.  Do you currently have blood clots or are you currently being treated to prevent them?  If you are then the DR who is managing this definitely needs to develop a plan of care with you for this surgery.

I had DCIS Grade 3 and a double mastectomy.  The pathology report from two pathologists after surgery confirmed their was no invasion, just DCIS and the margins were good.  This put me into a recurrence risk of 1-2%.  We sent the specimens to Mayos and had two more pathologists look at the specimen and they agreed with the initial report.  My oncologist said that if DCIS progresses to IDC it is usually because there was IDC to begin with but "missed" on exam and the fact that we had 4 different pathologist viewing my tissue that my recurrence risk was actually closer to 0- 1%.  He said that taking hormones (I was 100% ER positive and 99% PR positive) would reduce this risk by 50% which would make an actual recurrence risk of zero to 1/2 %.  To me 1/2% difference did not make the side effects of hormones worth it to me.  The fact that I had a bilateral mastectomy was crucial to my decision because although the "recurrence" rate for my identified cancer is very low, had I kept my other breast my risk for a "new" cancer in that breast would have been enough to make taking hormones worthwhile.

Hope this helps you.  You may not need hormones after this if your DX stays the same.  But most important, after surgery MOVE, MOVE, MOVE.  And make sure your entire health care team is aware of your blood clot history.

Wishing you all the best.

Karla

Fearless_One

If you are prone to blood cots, you should not be on Tamox.   And at 54, an AI might be a better choice for you, anyways.    Have you discussed this with your doc?

karen2757

I'm new at this...whats an AI?  My surgeon gave me all the options, and with a masectomy, I would not need radiation,or Tomoxifin..I am kind of to the point of not having reconstructive surgery,I am fairly small breasted, really, would anyone notice? Also, my breasts have been a source of stress and pain for years,I'm not sure I would miss them...

karen2757

I wear the stockings to work,I have a stint in my groin,the warifin is somewhat a safety net...ya, I've done the shots when I had my biopsy...ugh...guess you do what you have to do...I feel the same way about recurrance- just take them off...but do I want reconstruction? This is a harder decision...

HantaYo

Namaste!

Karen:  You can decide to do reconstruction immediately, or you can decide to delay your final decision.  There is no need to make a final decision at this time.  You can do the BMX now and just see how going without breasts works for you.  If you would like to try prosthesis after you are healed you could do so.  You don't have to make a final decision on reconstruction at this point.  You can decide to do a delayed reconstruction in 6 months or years down the road if you change your mind.  I would suggest, since you are ambivalent about reconstruction and thinking about it is adding stress to your life, that you just "table" it and think about it down the road when you are more settled with your treatment plan.  Many women here have delayed their reconstruction for years and have just as good results as if they would have done it immediately.  Other women have decided to not do any reconstruction and have been very satisfied with their choice. 

Karla

sweatyspice

AIs are Aromatase Inhibitors (hopefully I've spelled that right) which are drugs given to postmenopausal women instead of Tamoxifen.  That said, as far as I know, the only drug approved for DCIS treatment is Tamox. 

Fearless One, who mentioned taking AIs instead of Tamoxifen, has stage II disease and may not be aware that AIs are not generally prescribed for women with DCIS. 

It's a conversation worth having with your oncologist, just to clear up any confusion. 

Emaline

I am having immediate reconstruction but that is me.  This is such a personal thing. There is not one right answer that is right for everyone.  You can always change your mind too if you decide you want to do them later. I think the surgeons prefer, and it is easier (please correct me if I'm wrong someone) but you can do it later. Some hospitals do not offer immediate reconstruction and for some women, due to receiving radiation, it is not an option for them right away.

karen2757

Thank You!! I need to talk to my surgeon again..I thought I had to decide now, because they leave more skin (flaps?) if I was going to have reconstruction...this decision is more stressful then the masectomy decision.....

karen2757

Emaline- I love your name! We seem to be in the same place with our cancer, everything you said is the same that happened to me..".what do you mean, masectomy??? " it's all so surreal....I have had dense,lumpy, "busy" breasts my whole adult life, and always expected this to happen...I am so thankful is was caught so early...I have had to have mammograms and ultrasounds ever 6 months for awhile...I am still sore from the biopsy 4 weeks later.....In a way, I will be glad to get rid of them, and the problems they cause...good luck to you!

determinedmom

I had double mast with reconstruct over 5 yrs. ago.  I do not have a history of blood clots, but since that is a concern of yours I did want to mention a couple of things.  One, I did develop a hematoma after the initial procedure and had to go back for an additional procedure.  Also, after the initial exchange with implants I was not happy with the result so luckily my PS agreed to exchange for a slightly larger size at the time of nipple reconstruction.  I'm very happy with my result, but just want to make sure you realize it may not be just two procedures.  Another option to consider, if you want, is tattooing.  Instead of the areola tattoo many women have after nipple reconstruct, I elected to have flowers tattooed.  I've seen some beautiful tattoos on women who elected no reconstruct.  It's a very personal decision and only you can do what is right for you.  Best wishes.

karen2757

thanks for your input-I made my decisions,no reconstruction....had never though of the tatoo thing,someting to look into....thanks again for the reply...