TRIPLE POSITIVE GROUP

SpecialK and Debiann,

Thanks...your experiences and insights have greatly helped me to go into this surgery with a positive attitude now.

Debian, I live in Bucks County, Not too far from Allentown. Keeping your ovaries is not always a bad thing, since research has show that for some, they offer a significant heart and bone benefit even after menopause.

I have fibroids now (again) and am going to have to do something about them at some point if they continue growing. I am worried about Tamoxifen and its side effects in that regard. I had a huge fibroid grow while I was pregnant- wound up being about 5 pounds when they could finally remove it (my preemie daughter, in contrast, was only 3.5 pounds!). I don't want that to happen again. Right now my uterus is roughly 3 month pregnancy size. If I do wind up having surgery it'll be good to talk about just having a hyst/ooph and remove my remaining ovary. I lost one with the first fibroid - it basically tangled it all up and there was no way to save it at the time.

Well, I am finally PFC and am planning my surgery. I had a heart scan, MRI, and PET scan. The 5 cm. lump is gone, and I'm left with...I'm not sure what. The MRI says, "Where the previous mass was located in the right breast there is no abnormal postcontrast enhancement. There are some scattered areas of low-grade enhancement but no rapid enhancement and washout. Previous right axillary lymph node now appears normal caliber with no abnormal postcontrast enhancement." The PET scan says, "No suspicious activity seen in the breast or FDG-avid node seen in the axilla."

So, I asked MO what the surgeon would remove, exactly, if I had a lumpectomy. She said that he would take out the surgical clip and the tissue around it. She also said that he would probably take out the previously suspicious lymph node and its neighbors. I thought, "OK."

Would that be enough? Given that there's not really a lump, maybe the whole breast should go? I know I should be happy that chemo worked very well and had its intended effect. But, I thought that there would still be a tangible lump.

lago,

I know that I'm supposed to get radiation after surgery; I could ask about whole breast radiation. There are pros and cons of MX for me; I'm mostly concerned about recovery time and then reconstruction issues. The lumpectomy would no doubt make my right breast smaller and it would be scarred and all. But, it's far less complicated.

Elainetherese, I agree with Tomboy. You can go with the LX and later have a MX if you don't like how it looks. It's two surgeries but once it's gone, you can't get it back.

So, if I'm 58, waaaayyyyy past menopause even before I had a complete hysterectomy in my mid 40's, are there other choices than Arimidex, Exemestane......  I'm sure my onco will be prescribing something on my upcoming appt on Dec. 18th.  I want to be ready to ask for whatever seems to agree with most everyone else on this website or at least be able to question him about other options.

blownaway - my onc started me on Femara (letrozole) because it has a slight edge statistically from what I understand.  I did develop a trigger thumb on my dominant hand within six months, so switched to Arimidex (anastrazole) and stayed on it for a year until I developed a trigger finger on my left hand, a trigger in a toe, and left ankle, and right knee swelled and was so painful I had to have a cortisone shot.  Switched back to Femara again, because I figured I might as well be on the drug my MO wants, but this time got a different manufacturer - just happened to be the current formulary at the pharmacy.  Joint pain was noticeably less so I have requested that brand (Teva) ever since.  It has been more than a year and I have had no issues - knock on wood.  I am relaying that story so you are aware of potential issues, but also because each drug manufacturer adds different fillers and dyes - if you have problems with a particular drug it might not hurt to stay with the drug, but change the manufacturer.  I know Aromasin (exemestane) is a good drug for some, but I have avoided it due to the steroid content - steroids and I don't mix well.  I also have to say that when I changed my eating habits my joint pain decreased rather dramatically.

efc - It took six months for the first trigger to happen and it came out of nowhere, then after I switched to Arimidex it took a year for the other triggers to appear. I don't think I would have been suddenly affected by chemo 18 months out by the time the second triggers happened. Also, if that was the case I don't think they would have disappeared when I switched drugs.That happened both times. I spoke to the orthopedic surgeon when I had the cortisone injection into my knee and he felt that it was the AI drugs - never mentioned chemo. I had a ton of joint pain from the AI drugs, but had none from chemo. Not saying chemo isn't causing your triggers since you are not as far out pfc as I was, and if it is chemo related hopefully yours will go away soon! Hope so - they hurt! I'm sorry you're having them.

Blownaway, the other tissues in the body (especially fat cells) make estrogen, so even if your ovaries are gone or if you are like me and still have them, but are postmenopausal, you want to shut down all parts of the body that make estrogen.

Anyone on an aromatase inhibitor have sleep issues? I'm kind of dealing with not being able to fall asleep and then sleeping through my alarm in the mornings. I'm on Arimidex. Any thoughts on asking my NP to switch me to something else? Other than that, no huge symptoms from the drug except maybe it is causing my funk.

Wait...trigger toe?!? Is that where your toe spasms out from your foot so bad you can't walk? I get that after chemo all the time! I can't swim laps anymore because it sets it off and I cramp up in the pool. I am on tamox, not an AI though...but it is a serious problem. Some yoga poses set it off and I have to drop to the mat to stop it - what the heck?

PBrain

I too have had sleep issues with arimedex but I personally believe it is a menopausal issue and likely a S/E of any of the ESD's. (Lago's acronym estrogen sucking drugs FYI ) I was post menopausal when dx'd and had had sleep issues from the start of menopause. Just about everyone I knew did too.

Think arimedex exacerbated it for awhile but lately my sleep has improved.

Read an interesting article on the " drug cascade syndrome" of medicine. When treatment requires a multitude of other meds to treat the S/E's of life saving meds:)

geewhiz - sometimes a trigger feels like a charlie horse that doesn't subside, and other times if it is a toe or finger it will lock up in a bent position - it is painful! 

geewhiz - try immobilizing the toe - I used the stick to itself tape linked below - I just wrapped several layers, tight enough to keep the digit from bending but not tight enough to constrict blood flow.

http://www.cvs.com/shop/health-medicine/first-aid/first-aid-tape-gauze-pads/cvs-gentle-tape-first-aid-wrap-1-inch-x-2-2-yards-skuid-209995

geewhiz - so sorry you had to stop swimming - but if it hurts its not fun anymore - maybe if you immobilize for a period and get some relief you can go back to it - or if you tape you might be able to swim with it taped.  Hoping it helps!  I also have much less of an issue since changing to an anti-inflammatory diet.

tomboy - I will warn you that cutting out all of those foods is not easy, but it has paid off in many ways for me.  You may experience some fatigue - especially if you were previously ingesting sugar - but make sure you get enough protein and the fatigue usually dissipates.  The difference in my joint pain and ability to lose weight are enough to keep me doing this indefinitely, plus I just feel better eating in a clean manner.  The hardest thing is socializing and eating in restaurants - I turn into Meg Ryan from "When Harry Met Sally" in restaurants, but most places are pretty accommodating.  I do cheat on occasion, but have found that I can't tolerate sweet desserts any more, they don't taste good to me.  I was never a bread eater, so don't miss it.  I do miss cheese and sour cream - that is what I will eat when I cheat!

Interestingly this is the same diet recommended for tinnitus - I ended up with it from Carboplatin, but it has not lessened even after I started eating like this.  My husband was researching because he has a really bad case of it from so many years of flying combat aircraft - but he has done this diet too and his tinnitus did not improve either.  So good for some things, maybe not others - who knows?