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Carol Ann · 05-22-2014, 01:25 PM

Hi Freaking Out, I can empathize big time, see my signature, I started out with an "infected nipple", then the game changed, and then only had a small HER2 negative tumor before my "prophylactic mastectomy", was figuring I could avoid chemo, and then the game changed big time.

I'm so sorry you've had to join this club, but you've found a great resource of info and extremely supportive people.

I too had a double mastectomy, 6 rounds of TCH, am still on Herceptin until November. It is not easy and please feel free to have your wife PM me anytime when she is ready. I cried for weeks before I was able to talk about it to anyone.

If you could post the details of your wife's diagnosis, that will help everyone here respond. Its the "Quick links" button at the top of the page.

No, your friends don't understand, because until it happens to you, you just don't get it. I know how devastating it is, and so does everyone else here on this forum.

Whatever questions you can think of now, you can use the search box to find tons of posts and information. You'll learn more here oftentimes re: side effects, surgery tips, etc, than you will from the medical team. I know I have.

All you can do is take one day at a time. I know that's a trite cliché, but its true. I'm still doing just that!

Carol Ann

05-22-2014, 01:25 PM	#2
Carol Ann Senior Member Join Date: Dec 2013 Posts: 1,045	Re: Just Starting Our Fight, Help. Hi Freaking Out, I can empathize big time, see my signature, I started out with an "infected nipple", then the game changed, and then only had a small HER2 negative tumor before my "prophylactic mastectomy", was figuring I could avoid chemo, and then the game changed big time. I'm so sorry you've had to join this club, but you've found a great resource of info and extremely supportive people. I too had a double mastectomy, 6 rounds of TCH, am still on Herceptin until November. It is not easy and please feel free to have your wife PM me anytime when she is ready. I cried for weeks before I was able to talk about it to anyone. If you could post the details of your wife's diagnosis, that will help everyone here respond. Its the "Quick links" button at the top of the page. No, your friends don't understand, because until it happens to you, you just don't get it. I know how devastating it is, and so does everyone else here on this forum. Whatever questions you can think of now, you can use the search box to find tons of posts and information. You'll learn more here oftentimes re: side effects, surgery tips, etc, than you will from the medical team. I know I have. All you can do is take one day at a time. I know that's a trite cliché, but its true. I'm still doing just that! Carol Ann __________________ July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts. Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies". Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow. Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed. Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed. Nov 25, 2013 Begin 6 rounds TCH. March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY! March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks. March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :) April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :) June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia Nov 17, 2014 FINAL Herceptin! Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy. Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend. Dec 17, 2014 Port is OUT! January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)