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Second cancer, second thoughts

DvynMsK
Posts: 1
Joined: Jan 2013

Hi,

I've read some older posts regarding HR/invasive breast cancer in premenapausal women.  I am 45.  I was recently diagnosed with a second breast cancer in the opposite breast.  The first cancer was diagnosed in 2009, had a lumpectomy + radiation + tamoxifen.  That breast remains cancer-free.  The other breast has a tumor that is 1.2 cm, is also hormone receptive, and wasn't found on a mamogram the year before. 

My question is how to proceed.  I've made the difficult decision of having a double mastectomy.  I thought I would have my ovaries removed because I am still menstrating and it seems obvious that the drug isn't doing what its intenteded to do.  But, having just met with my ob/gyn, he thinks that a total hysterectomy is required.  The ovary removal will remove the estrogen, but he tells me that the tamoxifen increased my hormone production in my uterus.  Thus, significantly increasing my risk for uterine cancer.  I've been taking tamoxifen for 3.5 years.

Has anyone been approximately my age (or premenapausal) faced this decision?  If so, what factors helped you arrive at a decision to do something with the ovaries and possibly the uterus?  If a hysterectomy took place, what was the recovery like?  My ob said that hormone replacement was not an option...and led me to believe that there weren't any other homeopathic or Rx that could help with menapausal symptoms.  Doctor also wouldn't recommend the once monthly hormone supressent. 

A couple of other factors: paternal great grandmother, great aunt, grandmother and my own mother all had breast cancer.  There is no history of uterine cancer.

Thanks

 

 

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

I agree that decision about the mastectomy is very difficult.  I can't help you with the hormone question, as I am triple neg inflammatory BC.  But I just answered another post about mastectomy...I hope you don't mind that I did the cut and paste thing.

 

I had a bilateral with axillary dissection on the left in Jan 2011, no reconstruction.  I had 3 drains at first, they were annoying more than painful.  And I needed my husband's help to care for them for about two weeks, after that I could take care of the remaining one or two myself.

I did have difficulty moving my arms beyond a small range for a while.  The thing that helped get my range of motion back, more than anything else, was the exercises.  In my case they were very gentle but improved my range of motion very quickly.  Be sure that you move anything you reach for (high or low) to a comfortable mid-zone.  Think about dishes, clothes, etc.

Some additional advice, don't be afraid to ask to see a physical therapist.  They can help you with range of motion/pain issues you might have.  My surgeon told me to only lift two pounds at first.  I was also told no repetative motion (vaccuuming/window cleaning/raking leaves) for 6months.

Get pj's/clothes that zip/button up the front.  You won't be able to lift your arms above your head for a while.

Have help lined up, people want to help.  So give them jobs...laundry, clean a room, run an errand, watch the kids, mow the grass, shovel the snow, bring a meal, etc.  For some of us who are used to doing things ourselves, this can be very hard, so you may want to consider one good friend who can organize this for you.

I slept in my bed with a wedge pillow and smaller pillows of various sizes to support my arms.  For a couple of weeks my husband still helped me out of bed.  Others here have slept in a recliner.

I hope this helps you.  Please let us know when your surgery is scheduled, and what you decide on the hysterectomy.  Oh yea, I just remembered a site called hystersisters that you might want to check...

Hugs,

Linda

VickiSam's picture
VickiSam
Posts: 8314
Joined: Aug 2009

beast, again. 

Wish that I had The Magic for us all....but of course, I do not. I hope that posting
and being so brutally honest was cathartic for you, and I for one am
pleased that you feel the safe haven of this room to do just that. If this place
isn't the true definition of support, I don't know what is.
We are here for you, 24 hours a day, 7 days a week.
 
Best of luck, and prayers coming your way.
 
Vicki Sam
disneyfan2008
Posts: 5426
Joined: Oct 2010

After 4 yrs ON Tamoxifen I had an ENLARGED uterus (Age 52) and had to have a hystectomy. I told my Dr to TAKE everything he could, since I WOULD NOT go back later for more to be removed. I am happy with my decision. (this was last year)

 

Denise

disneyfan2008
Posts: 5426
Joined: Oct 2010

MY hysterctomy had a couple set back for recovery. I was totally impacted and had to go the ER for a VERY unpleasant procedure two days in a row.

 

I felt OK and back to work at 8 wks but 10 weeks it was like someone flipped a switch and 110% back to myself.

 

Denise

Barb A's picture
Barb A
Posts: 101
Joined: Jun 2009

I had a mastectomy in 2001 - one breast. A year later I had a complete hysterectomy due to extensive bleeding. My ob/gyn recommended a complete due to the risk of uterine cancer (on Tamoxifen for a year). I was 38 and am glad I went with the complete. I take Effexor XR to help with the mood swings and hot flashes. It works really well for me.

I had another cancer in the reconstructed breast in 2007 and had a lumpectomy, chemo and radiation. So, even with mastectomy, keep doing a monthly breast/chestwall exam. I'm done with Arimedex in April of this year, so time will tell what's next for me.

Barb A

 

Josie21
Posts: 358
Joined: Nov 2012

Sorry you are facing this horrible disease again.  When I was diagnosed with invasive lobular carcinoma Stage 1 in my left breast, I immediately had a bilateral mastectomy because I had already had LCIS and DCIS in the other one.  I was being watched so carefully for years and then there it was! When they found it they said it had to be there for years. It was 1.9 cm so for me I just didn't trust my breasts anymore.  I had the bilateral mastectomy with immediate reconstruction.  i had saline implants put in 6 months later.  The whole expander thing was weird, but I have to say I never experienced any pain during any of my operations.  I personally thought the mastectomy was easier than the lumpectomy I had for the DCIS.  As for the hysterectomy, I had it done two and a half years later.  I had a cyst on my ovary that would not go away.  I met with a new gynecologist that said my ovaries were shot from the tamoxifen so why take any chances.  i had my ovaries and uterus removed (kept the cervix).  Had it done laproscopically (hope I spelled that right) and again it was not bad.  I was uncomfortable, but I was walking around by the next day. I think being in good shape before my operations really helped.  I have absolutely zero regrets with having the mastectomies or hysterectomy done.  The worst thing about the hysterectomy is that I had to change to aromasin.  For me, aromasin came with side effects and tamoxifen did not.  Now I am 4 years out from when this all started and doing great.   I just wish I could have the part of my brain taken out that constantly thinks about this horrible disease coming back.  I am 47 years old now and plan on being around for a long, long time and so will you. if you want talk, let me know.  I've been where you are now and I totally understand!!!

Double Whammy's picture
Double Whammy
Posts: 2318
Joined: Jun 2010

I used to think it was my friend and I do miss some things about not having any, but I'm 65 and post menopausal anyway.  I don't know what having an abrupt halt to estogren feels like, but I experienced natural menopause with no issues.  Yet I had 2 estrogen hungry tumors, breast cancer and endometrial cancer, diagnosed 4 days apart.   I would advise anyone whose obgyn recommends hysterectomy these days to take that recommendation seriously.  GYN cancers can be very serious business.   I had robotic assisted laparoscopic hysterectomy 6 weeks following my breast surgery.  Because I had cancer, they took my uterus, ovaries, fallopian tubes, cervix, and pelvic lymph nodes.  I spent the night in the hospital and went home the next day on NO pain meds.  My surgery was really easy for me.  Uncomfortable, but no real pain.  And that was me.  Others have different experiences.  If you're having your ovaries removed and you've been on Tamoxifen, I think I understand the recommendation of a hysterectomy.  Be done with it and not have to worry about cancer down the road. 

Good luck to you.  Post any questions you have about either procedure.  Someone has had similar experiences and can help.

Suzanne

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