TRIPLE POSITIVE GROUP

debiann

Ella, I live outside of Allentown. Yes, getting the uterus out gave me immediate relief! Prior to surgery I wasn't seeing a gyno, just my family dr. I was having all kind of pain and bowel problems that were being treated as irritable bowel. I was getting no relief, so I went to a gyno who said "your uterus is the size of a grapefruit, no wonder your having problems."

He left the ovary decision up to me, explaining the pros and cons. When he said removal would mean I would be thrown into immediate menopause it scared me, so I kept them, deciding to go through it the natural way, which once it started turned into four miserable years. I now think I would have preferred the immediate change.

Also, during chemo I met a 70 year old woman with ovarian cancer. She too had her uterus removed when younger. I'd now truly wish mine were gone.

Ella_117

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.

Bren58

Ella and Debiann, I live on the edge Berks & Chester Counties. We should try yo get together sometime!

CassieCat

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.

Ella_117

CassieCat, it is interesting to hear how many of us Triple Positive ladies have fibroids! I can't believe yours weighed more than your baby!

I have had these for years, but I really think the Tamoxifen may have played a role in recently stirring them up.

The key is to try and treat them before they get too large, since there are many great new options that are less invasive then the Hyst/ooph.

Bren58... It would be really fun to get together with you and Debiann. I live in between Philly and Princeton, NJ. and am close to the PAturnpike. Do you live anywhere near Adamstown, PA or Robesonia?...I love going antiquing at Renningers and the Black Angus!

ElaineTherese

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

ElaineTherese Old school would say to do the MX because the tumor shrinks like swiss cheese and you don't know what is left but… Lump with radiation can be more effective in some cases. Radiation is so good at killing cancer. Are you getting whole breast radiation if you do Lump? I would think maybe given the size of your tumor. I know even though I had a BMX my tumor (invasive size) was 5.5cm which typically does get rads. I was in a grey area I believe because of the location and damage it would do to my heart. My Rad onc gave me a pass.

ElaineTherese

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.

Tomboy

Far less complicated, and, you could always go back and get a mastectomy. It sounds like you had a pathologic complete response to neoadjuvant chemo, and that is a great thing!

Mommato3

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.

lago

Elainetherese you have scars with MX too. Like the others said you can always go back and get the MX.

Blownaway

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.

Tomboy

just wanted to tell everyone, I got concerned with anonymity, and changed from kathec, and i have always been a tomboy, so i thought it would be auspicious to change for the new year! hopefully, i will start acting like one again soon. Well, I have been, a little bit. won't feel better till I can climb a tree again, I guess...

SpecialK

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.

efcjax

Special, I can't believe what I just read. Trigger thumb on your dominant hand. I just had to get a shot for the same thing, only I'm 4 months PFC and started Tamoxifen a little over a month ago. The ortho said chemo causes inflammation which can cause this. I notice when I sleep, my hands swell. Even the thumb on my non-dominant hand starts getting stuck.

SpecialK

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.

Pbrain

Ella, Debiann and Bren (Bren knows this), I grew up in Souderton/Lansdale area and lived in Center City Philly the longest I've lived anywhere. I'm home for Christmas this year, so maybe we can all meet? I miss my old stomping grounds, but do love Indy too.

Pbrain

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.

Moonflwr912

pbrain. I take my Arimidex in the am. But i do stay up late. I sleep in when I can. Much love

geewhiz

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?

ashla

Geewhiz

Me too on the cramping and joint issues. I attribute it all to AI....have had several discussions with my MO about it.

ashla

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:)

lago

Pbrain I had sleep issues on Anastrozole. I don't have them on Exemestane. I take my drugs in the morning.

SpecialK

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

Then that's what I have - the big toe spasms out sideways and does not subside for at least 2 minutes. It started with taxol. Never had it prior.

SpecialK

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

Thanks SpecialK!

Yeah - I look completely spastic when it strikes..at least once a week. I have learned a few things that fire it up so that helps. Swimming is the worst - pushing off the wall during laps does it nearly every time. So sad, because I really enjoyed it, very relaxing.

SpecialK

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

special k, i am starting to think that the anti inflammatory diet is everything! I havent tried it yet, but many things i am reading are agreeing with you about that. So i am going to start trying.

I went through menopause naturally at 45, and never had any sleep issues. i am 55 now, diagnosed at 52. Diagnosis kept me awake at night for sure! Then things calmed down a little, but arimidex and now femara, i cant get to sleep easy, sometimes until after two, but I tend to stay asleep once i do. When night~mares don't wake me up. I have had more night~mares since DX than i had in the whole rest of my life!

SpecialK

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?