MASTECTOMY MEETUP

I had a bilateral mastectomy, so I lost both breasts. It has been tough but Id rather lose them than myself. I havent done reconstruction, I am still in the air about that plus I want to get through all my treatments first.

Another factor is that narcotics cause constipation, so use only as much as needed and then switch to tylenol or ibuprofen (with your surgeon's blessing since ibuprofen is a blood thinner). I had 2 separate MXs and both times asked for Tramadol instead of Onycodine or Norco. Even then I only took it for a couple of days and then just half a pill at night for a couple more days to help me sleep.

I had my mastectomy on Nov 3rd. If not including the drain clog issue, everything else works fine. I started going out to take a walk one week after surgery.

Now I had been back to work for two weeks and I am also taking the physical therapy to avoid the risk of lymphedema.

Congratulations GoinCrzy8!

Hi everyone, Just wanted to wish you all the best of luck on your surgeries. I had a mastectomy of my left breast in March of 2015. I had chemo first, then the mastectomy and then radiation. I'm currently taking Arimidex.

I'd say the actual surgery wasn't as bad as I thought it would be. Didn't like the drains - no one does. Fortunately, they came out pretty quickly. I slept in a recliner for a couple of weeks. I could probably have gone back to the bed sooner but had a real fear of my DH rolling over and accidentally hitting me. I started radiation about 3 weeks after surgery. I had to go for physical therapy because I could not raise my arm above my head which was the required position during my radiation treatments. That was difficult and painful but it helped. Sounds silly but one thing I was really worried about was having the staples removed. Just sounded like it would be so painful. My BS removed half of them at one visit and the other half at the next visit. Turned out I never felt a thing. Amazing.

I was sent home from the hospital in a binding type of bra that zipped up the front. It was the most comfortable bra to wear for quite a long time. I had bought a special cami that held the drains but never used it because it was uncomfortable. A zip up hoodie worked best for me - drains stuffed into the pockets. I do recommend button down shirts - loose fitting and a soft material. I bought two sizes larger than I normally wear. Not only were they useful after the mastectomy but also wore them all during radiation, too.

Bras have not been my friend since the mastectomy. To this day, I'm still not comfortable wearing one. I go without one at home. I tend to wear a coobie or genie bra rather than an actual mastectomy bra. They're just more comfortable. I am considering having my right breast removed. I have very dense breast tissue and have had two very stressful mammograms/ultrasounds and am fearful of not finding cancer if it develops. ILC is known for being very hard to detect. I had a clean mammogram one year and by the next year it had spread into my lymph nodes.

Anyway, good luck to all those heading into surgery and hoping for an easy healing to those already done. Take it easy and be good to yourself!

Hello,

I had a R lumpectomy in July with positive margins, then a re-excision in August still with positive margins. Because I have 2 positive nodes, the tumour board felt I should go straight to chemo, and then deal with the positive margins afterwards by having additional radiation boosts done to the tumour bed.

I've finished my AC chemo, but still have 3 months of Taxol chemo to go. I'm feeling troubled by the idea of the lingering cancer in my breast (who knows how much!), and by the idea of extra radiation to deal with it. Before chemo, my scans showed that 1) I have below average heart function (LVEF) and 2) nodules on my lungs which are apparently not significant. I know that higher radiation doses can cause heart and lung damage down the road, so the extra rad boosts are not appealing.

I'm going to see my breast surgeon next Tuesday, to see if I can schedule either UMX or BMX after chemo but before rads. Some questions:

- Is is difficult to get BMX if only one breast has cancer? I don't have any real reasons for BMX except for psychological reassurance and closure.

- How long do you have to wait after surgery before starting radiation treatment? (Will it push out my radiation treatment too far?)

- If you are going to do any reconstruction/implants, does it have to be done or started before rads? I've heard that radiation treatment changes the breast skin and makes healing more difficult.

All comments and suggestions are appreciated!

Thanks, Barb

Hi Barb,

I also had a lumpectomy and then a re-excision with still no clear margins. I opted for a mastectomy over another lumpectomy instead of dealing with what else they were not seeing (my MRI before the re-excision showed nothing else, but the pathology report found more DCIS). I had chemo first, then my UMX last month. I was told I need no radiation. Yeah! One less thing causing harm while trying to get rid of the disease. My aunt had a UMX, no chemo, but rads. Doctors and treatments are so different and I guess it depends what stage, grade, etc. as well.

Goincrzy8, I used Miralax the day of the surgery and ate fiber gummies the first couple of days as I did with the chemo. That took care of my problem. :-) As for the bras, I am still trying to find a comfy one. I have 5 or 6 different ones thrown on a stack in the corner that I have bought and tried. It's been a week since I tried wearing one. I even added 2 bra extenders to make sure everything was nice and loose and it still felt awful after a couple of hours. UGH I can't go braless at work so I have been using the one front closure bra that is way too big and rides up all day. But at least it doesn't leave the marks. Still not the most comfy thing. I pad both sides to help perk up the real breast. Otherwise the foob filling looks way too perky in comparison. Had a second post op this week and BS gave me the prescription for the bras and prosthesis. I need to get those ordered before Dec. 31st as my insurance company changes January 1. Yeah..not!

~Heidi

Yes , I had umx with tissue expander first . Then found out that I have a genetic mutation so after radiation I took a break and then scheduled the other umx with tissue expander . I haven't had exchange surgery yet . I will have it sometime this coming year hopefully between January and March . My PS thinks that I will be OK with implants but wanted me to understand that the radiated side will not be the same as the non radiated side and I have a high risk of developing capsular contracture . Still better for me than flap surgery .

Barb- I just had chemo #6 of 6 (fingers crossed the end) today....I knew I was always going to do a BMX if this ever happened (mom had BC twice, and colon cancer- other female family members with BC), and just thought implants. The past week I started to look at other stuff and it just gets so overwhelming and confusing with all the options so I feel your pain! I think I'm back to TE with implants. Keep me posted on your journey- I'm waiting to hear about surgery date but assuming mid to late January.

Everyone's feedback is so helpful- thanks!

goingcrazy8 .... Sorry to hear your drain is still with you but glad things are looking good and you're healing well.

HI Everyone!

first time posting on this board....I don't have a date for my surgery yet b/c I am still doing the Taxol run..I think I have 4 left...when I spoke with my ONC on Friday..he says that I should get a mastectomy on my affected breast...and I agree....I asked him if I should just go ahead and get it done on both breast...he said I could If I wanted to but that would be my decision/ if I went that route I wouldn't have to get the mammograms any more...he said that there are a lot of options for reconstructive surgery If I wanted that in the future....I told him I will think about this...but I think I know what I want to do....I want to do the mastectomy on both breast...b/c what if in a couple of years cancer invites itself to my good breast..i would be so upset and I cannot go through this again...so I am going to just get both of then taken off.

Has anyone else went this route? and if you have what are the cons and pros of going this route?

Thanks

nayda , I initially had a umx but after a few months could not handle the stress of mammograms so had a second mastectomy .