Double mastectomy 5 weeks ago ....now what . Help :)

ShellBells

Hi, I just had a double mastectomy 5 weeks ago so this is ALL new to me.   I had infiltrating ductal carcinoma, 2 cm, no nodes involved, estrogen positive.  I am 45, and not quite close to menopause.  My OncoDX score was 18.  My doctor did not recommend chemo, but said I should take Toremefine, because a blood test show I might not be able to tolerate Tamoxoifen.  This is very confusing to me as most of the info on this drug is for postmenopausal women...... Thanks for any advise ! Shelly

janey47

Shelly, I can't answer your questions but I wanted to just let you know I hear you.  It's all very confusing and scary.  :-(  Sending you positive energy.

Have you seen Dr. Susan Love's Breast Book?  It gives a TON of information.  More than I could handle, to be honest.  But it seems like the go-to book.

Annabella58

Shelley, I was sort of in your boat.  I did take 5 years of tamoxifen, was 51 when got my 2nd bc, no nodes, estrogen positive 1.5 cm, and no where near menopause.  NOWHERE.  I had to take lupron shots to keep me in a negative state where I wo uld not make estrogen.  Since I could not take tamoxifen, I had to get arimidex.  This can only be taken by women that are post menopausal. 

The lupron was a nightmare.  After 6 months of that, I opted for a hysterectomy/oopharectomy.  This put me into surgical menopause, since at now 52, still no slowing down. (plenty of estrogen).  I had heard ghastly stories of this, but honestly, surgery was a boring non painful (tylenol only) walk in the park.  No problem.  No hot flashes, just a few warm ups.  I had no mood swings, no issues.  Sex was a little issue, but there are many products to help.  UTIs were a bit of an issue, but easily and permanently cured with a prescription cranberry supplement.

So, in short, I was where you are, and I sort of took control of it.  For me, the lupron was so awful, that was the worst part of the whole thing.  I don't know of the drug that you are mentioning, but I guess you could try it?  There are always options for you....

good luck!