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Getting Dbl Mastectomy - need info of experiences on surgery and after

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

It's been on my mind for a while now.  I'm not happy with my chances of recurrance even after chemo.  Rads can cause heart problems (heart problems are prevalent in my family) and lung problems (which I alrady have a mild problem with now) so I will be skipping rads and getting dbl mastectomy.

I discussed it with onco yesterday before chemo and he said based on my reasons he felt it was a good choice.  He wants me to finish chemo first and my last round is on 8/15.  He said the surgery can be done shortly after that.

I have appt with plastic surgeon this coming Monday and appt with surgeon on 8/12.  I'll see when things will progress after that.

I've discussed it with a friend who doesn't have cancer, one who had cancer and mastectomy, and prayed with my pastor about the decision.  I'm not happy to do this, but at peace that it is the right thing to do.

Could use some advice on surgery and after surgery on what I can expect.

Thanks,

Sandy

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

Does anyone have experience with dbl mastectomy that can help me be mentally prepared?

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

3 of my sisters had double mastectomies.  I initially had a single, but later had the second breast removed due to risk.

My younger sister chose, like you, to do chemo, tamoxifen and surgery--no radiation.  I don't like to be the bearer of bad news but she then had a local recurrence 5 years later.  She then had additional surgery and radiation and has been on femara for many years now.  So far, so good.

My older sister just had a preventive bilateral because she was the only sister who had not had breast cancer.  She did ok, but says full recovery to take 4-6 weeks (depending on your age and health).  She was feeling great right after surgery and ate a milkshake.  That set her back...Lol.  She had to then take many meds to get nausea under control.  Go slow with eating after surgery!

I was the first sister to have breast cancer and was Stage 3.  I had a long remission of 18 years, but am now Stage 4, back in chemo for liver mets.

Good luck with your surgery!!!  I know you are making the right choice for you, but be very vigilant without the radiation after and still examine that chest wall and excision line regularly.  Cancer is so darned sneaky!

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

Did you or your sister have lymph node involvement when you were first diagnosed?  My lymph nodes were clear.  I had one dcis on the left and 1 stage 1 invasive with clear nodes on the right.  I had to have chemo when my OncoType result came back at 32.

Since I have been on chemo I have been reading more about radiation, planning for the next step.  The more I read about heart and lung damage the more concerned I became.  I want to reduce my chances of recurring CA, but at the same time damage to my heart and more damage to my lungs is also a serious concern.  I feel I'm between a serious rock and a hard place.

I do know there is still a chance the CA will come back.  It is a fiendish enemy, and I will not miss appts with onco, surgeon, or gyn to make sure I stay on top of it.

This whole experience has been like walking a tight rope without a net.

I appreciate your help and input.  You have been in my prayers for the last few months and I will continue to pray for you and your sisters.  And I won't let anyone sneak me a milkshake after surgery.

God bless,

Sandy

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

My sister was Stage 1, clear nodes.  The chemo was elective for her but she did it and, for some reason, did not do radiation. 

My oldest sister had a very tiny Stage 1, clear nodes and had bilateral and hysterectomy/oophectomy.  She has been cancer free for 20 years.

I was Stage 3 with large tumor and 4 nodes.  That was in 1987 and tumor testing was limited.  I just knew my tumor was ER, PR +.  There was not even her2 testing back then. 

I, of course, had the works: mastectomy (tumor too large for lumpectomy), chemo, radiation, years of tamoxifen.  I had deeper than usual radiation because of the tumor's proximity to my chest wall.  My lung (left) did fine.  20 years later I had a small heart attack (with no cardiac risk factors) that my cardiologist thinks was more related to undiagnosed mets at the time (hypercoagulation from mets caused small clot to travel to a small heart artery).  He may be right because I required no stents or bypass and the rest of my heart is very healthy.  Of course, I am now on a statin, beta blocker and ace inhibitor--the post heart attack cocktail.

I will never know if my heart attack was related to my previous treatments, but they can all take a toll!

Do not let my experience (or my sister's) change your thoughtful course or scare you.  Radiation will reduce your chance of a recurrence, but we all must weigh the risk/benefit ratio.

I feel that I have actually been so blessed.  My daughter was just 4 when I was diagnosed and I prayed every day to see her to 8 or 12 or anything older.  She is now 31 and engaged.  I am in a battle, and may not win the war, but I will fight as long as I can!

Prayers for you and big hugs!

cinnamonsmile
Posts: 1042
Joined: Dec 2010

I sent you a private messagel

I really don't think I can give advice on how to mentally prepare for it. I think we all have to find our way. I hope you find yours.

eihtak
Posts: 809
Joined: Oct 2011

Hi, I agree mental preparation comes from a different place for us all. About 1.5 years ago I had a double mastectomy for a rare secretory carcinoma of the breast. This came just one year after treatment of chemo/radiation and surgery for Stage 3b anal cancer. At the same time my husband was undergoing a bone marrow transplant for multiple myeloma!! Talk about finding some way to prepare. I used to go for drives in the car (I love to drive) and listen to motivational music cranked up on the radio. Sometimes I would sing, laugh, pray, or cry.........but usually felt better after. The surgery went well, but like said, take it easy afterward even if feeling good. Too much too soon will cause some set-backs. I never had reconstruction and so have that visual reminder everyday when I get out of the shower of where I've been, but have come to a point where I see sooooo many other people suffering with challenges far worse than mine. (Both cancer related and otherwise) I have occasional bad days because I'm human. but overall right now feel truely blessed for the things I have learned and have no regrets for my decision on the mastectomies. You'll get actual details on physical healing when the time comes nearer.

Hearty Pioneer's picture
Hearty Pioneer
Posts: 123
Joined: Apr 2013

Dear Sandy,

I had a double mastectomy with DIEP reconstruction June 25, 2013.  To get ready I read lots of websites and books, I asked questions on this csn discussion board, went to a breast cancer survivor group and asked questions there, and talked to four friends that had gone through breast cancer (2 had reconstruction, 2 did not). I have a fantastic oncologist and plastic surgeon.  They both answered all my questions and encouraged me to talk to others. I felt it was a very tough decision. 

I have really needed this recovery time, I am just now at week 4.  I am still on the 5 lb weight limit for lifting.  My family and friends have been great about helping out and letting me heal. 

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

Are your drains out yet?  How difficult are they to take care of?

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

You will be a whiz at the drains before you leave the hospital.  They are not hard to take care of.  They are not painful, but cumbersome and uncomfortable and everyone wants them out!  But don't be in too big a hurry, because the fluid will accumulate in your chest if it isn't draining out. 

Some hospitals supply you with a velcro holder that makes its easier to secure the drains.  Ask!  My sister was given one (in Seattle) and said it was so helpful.  I had no such thing so I did the best that I could with take and pockets.

Good luck!

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

Thanks.  Drain care had me a bit concerned.  I seems at this point I will be going home with octopus legs hanging off me.

Thanks for the info on the stages you and your sisters experienced.  I am going to stick with my decision, but will be more diligent in watching for signs of new problems after your warning of things that could come up.

How is your sister that just had her surgery doing?  I'm still praying for her and for you also.

God bless,

Sandy

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

She is doing great!  She is sort of hyper--a physician and not a great patient...Lol.  She wanted to be back at work in a week.  I believe she went back in about 3 weeks.  Her pain was manageable and her breasts look great.  She ran into some constipation issues from the pain meds, but I sent her the power pudding recipe from this message board and she said it worked.

Power Pudding: 1 cup all bran cereal; 1 cup applesauce; 3/4 cup prune juice.  Keep in fridge.  Eat a couple of tablespoons as needed and drink lots of water with it.

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

Glad to hear she is doing so well.

Thanks for the recipe, can certainly use that now.

Sandy

Candi Cane
Posts: 161
Joined: May 2013

Wishing you good luck!

Hearty Pioneer's picture
Hearty Pioneer
Posts: 123
Joined: Apr 2013

I started with 8 drains. 2 in each breast mound and 4 along the bottom of the DIEP site. I came home with 5 drains (1 week), then 3 (1 week), then 2 (3 days) and then done.  So I was finished with drains by the 3 week check up. A previous DIEP patient, gave me her drain bag.  It was wonderful! I wore it around my neck and kept the lines safe and secure.  So much better than pining them to my clothes.

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