Starting Chemo in JAN 2007

I had the appointment with the gyn. onc. today regarding taking out my ovaries. She agreed that hindsight is 20/20 and who could have known I would get ER+ BC - Based on my family history, ( no direct BC or ovarian ), she thinks the fact that I am premenopausal Jewish Ashkenazi under 50 does have some bearing, but doubts I have either the BRCA 1 or 2 gene. As someone mentioned, if I am positive, it is a no-brainer to take out the ovaries and the other breast. My onc. does not think it is necessary to take them out, I will get tamoxifen - the gyn. onc. today wants to send me for another opinion - a chemotherapy specialist who is sort of "neutral" - not a breast onc. or gyn. onc. - although she said he usually recommends highly ER+PR+ women like me to have the ovaries out - she also asked me what I would like to do - (I think partly because I come in with a few articles from the internet that she looked at so I guess she could tell I have really researched this)- I told her I am leaning towards taking them out - what do I need them for? Another stickler - 5 months ago when I was first diagnosed my GP ran a series of blood work that included the CA-125 test for ovarian cancer - my score came in at 56 - over the high acceptable of 35. Two subsequent ultrasounds showed many ovarian cysts (which I've had on and off for years), and I had a gyn. internal exam in Nov. with my regular gyn., then again with this gync. onc. today - all normal. 4 doctors have all told me that this CA-125 test is known for false positives, and are not concerned. The gyn. onc. today ( a huge specialist in Canada) told me she is not at all concerned about the score, as many things can elevate it - and it is only a slight elevation- ovarian cancer usually is in the hundreds+ category- especially since the ultrasounds and physical exams are okay. But she redid the CA-125 test again today, I should have the results by Friday. I will be relieved to see the level go down. So something more to worry about... Regarding suppression of the ovaries, I don't think they do this that much in Canada - it's either the hormonals ( tamoxifen and or an AI) - or yanking them out - I am leaning towards the surgery, but we are going to wait for the genetics test results, which for me will be 4 months or so. Unless that CA-125 level is still high, then I will talk to the gyn. onc. again.
Regarding the insurance issue for the genetics testing, I think I have read that you ladies in the US are supposedly protected from discrimination, but who knows if that REALLY applies. I'm not sure about Canada, but the genetics counsellor told me it's already out there for my girls that their mother had BC - they can't lie about that. I just hope and pray I come back negative.
Regarding sleep issues, I have been on Imovane 7.5 mg. for almost 2 years for various stress issues - of course last year I was starting to wean off them, then DH had his aneurysm - then as he was getting better, I was starting to wean off them again, then I got the BC dx. So I guess I am addicted for now but all my doctors aren't worried because I need my rest, so I will deal with this issue sometime in the future.
Jan - I hope your aunt recovers.
Robbinjaye - I've had a small polyp on my gall bladder for years that has been nothing to worry about, they just watch it.
Wow I guess I've really gone on here, but it was quite the day.
I am feeling better, just tired. Tush and bladder are on the way to recovery.
Caya

Mary, my PS specifically wanted to expand me before Rads because he said that it makes the tissue less elastic, and you get a poorer result. Both my PS and the Radiation Oncologist were not concerned about my reconstruction, I only recieved one mild caution that there can sometimes be complications. Where did you hear that 50% failure figure? I find that quite alarming....not that I can do anything about it now anyway.

Hello all:

Rebecca, I would check with your plastic surgeon about rads. Each doctor is different on how they do things, so he must have done the same approach with others, and never had any problems from the radiation.

Mary, glad to hear your BIL is a bit better.

Good grief we had snow for most of the day, with more expected tonite and tomorrow. I still got out for my walk, and we do have robins running around in the snow. The swans haven't arrived yet, so until they do I guess it will stay cold. We get hundreds of white swans landing on our lake, then they head up north to Wood Buffalo National Park.

I'm going to send Mizsissy a pic of the walkway they built for the elk just outside of Banff. It's like they know that they have to use this. There were so many getting killed on the highway and now they use the overpass. Kind of neat.

Caya, I have to see an OB/GYN also, to see if I should have my ovaries removed. I was 100% ER positive, and 80% Progesteron positive...Her2 Negative. So my onc feels my cancer is very much fueled by estrogen.

I still need your pics to put our "January Chemo Girl" scrapbook together....send them to my home email...joanblack@shaw.ca.

Mizsissy, send me your home email, and I'll send that pic for you to post, if you would kindly do so.

Also, Mizsissy, did they give you tattoos for your radiation? Did they tell you how long they would last?

Hope all are well tonite...


Joni

and your tender spot. Will keep you in mind and my prayers while you wait for some answers.

Cindy

Cindy thank you also for prayers. I think it's your snow we are getting tomorrow.
Mizsissy on the hot flashes, you have a classic case. Sounds like you are doing about all you can do. My onc said to try Vitamin E but that I didn't hear it from him. It does eventually get better, I no longer have to rip off my nightclothes, it's usually enough just to hang a leg out of the blankets for a while and also take off my sleeping cap for a few minutes now. Keeping a cold washcloth by your bed to sponge your face is good too. I've tried the soy-based pills but they did nothing. And then the dh's wonder why we are grumpy! - Skye

my amplication score was 10.5. All my oncologist told me is that the score was "impressive". What does that mean???? She never mentioned that the higher the score the more aggressive the c. That is a question for my next appointment.

For all of us getting taxol and herceptin soon, hopefully it will be easier than the other stuff. It seems like it might be.
Time to get some sleep.

VIDDIE, WHAT IN THE WORLD IS AN "AMPLICATION SCORE"? WHY DIDN'T I GET ONE OF THOSE? MY DOCTOR USED TO WORK AT DANA FARBER. ??? I KNOW I GOT A BAD ONCOTYPE DX SCORE (44) BUT HE DISCOUNTS IT..SAYS THEY WEIGHED HER2/NEU TOO HEAVILY. MY AUNT WORKS AT MASS. GENERAL AND SHE HAD A BC DOCTOR LOOK AT MY PATHOLOGY TOO AND SHE SAID I "WASTED MY MONEY" ON THE ONCOTYPE DX TEST, WHICH WAS $3500 BY THE WAY...SO FAR, I HAVEN'T BEEN BILLED. KNOCK ON WOOD.

CAYA, LOTS OF GOOD INFO. IN YOUR POST RE: OVARIES. I'VE NEVER HAD A CA125 TEST DONE. I'D LIKE ONE, PARTICULARLY BECAUSE I'M CONSIDERING REMOVAL LIKE YOU. BUT, IF I SCORE HIGH WILL I BE MET WITH "HIGH SCORES CAN BE AN ERROR" JUST AS I DID W/THE ONCOTYPE SCORE (NOT ALWAYS ACCURATE!). WELL, SOMETIMES THESE THINGS HAVE TO BE CORRECT, DON'T THEY? I'VE HAD A DERMOID OVARIAN CYST REMOVED DURING MY C-SECTION, A CYST DURING MY FIRST PREGNANCY SO OVARIAN STUFF SCARES ME...

SKYE, HOPE YOU GET RESOLUTION ON THE RIB PAIN. I HAVE A BIT OF TENDERNESS ON MY RIGHT SIDE AS WELL... I ACTUALLY MENTIONED IT TO MY REGULAR DOCTOR A YEAR AGO JANUARY PRIOR TO THIS SUMMERS DX. I'D HAVE TO IMAGINE THAT IF I HAD LIVER METS OR IT WERE MY RIBS, MY BLOOD TESTS WOULD BE FUNKY... MY BLOODWORK COMES IN NORMAL. TODAY I WOKE UP W/A SEMI-PAINFUL SWOLLEN LYMPHNODE UNDER MY CHIN...ONLY PALPABLE IF I PUT MY CHIN TO MY CHEST. I'VE FELT THIS AREA FLARE UP IN THE PAST AND I THINK IT'S COLD/ILLNESS RELATED. I FELT A SLIGHT RETURN OF MY SINUS ISSUES THAT I SEEMED TO HAVE BEATEN TWO WEEKS AGO. MAYBE THAT'S A SIGN THAT MY BODY IS TRYING TO WARD OFF A RECURRENCE OF MY SINUS COLD? I HATE TO BE "O PARANOID ONE" AND RUN BACK TO MY ONCO. FOR SOMETHING THIS SMALL....PLUS, I SEE HIM ON THE 17TH AND IF IT WAS STILL SWOLLEN THEN, I THINK IT'D BE A JUSTIFIABLE WORRY.... I'VE HEARD THAT AFTER TX, EVERY ACHE AND PAIN BECOMES A WORRY. ON THAT NOTE, I'M OFF TO MY ECHO. APPT. TODAY AT 9. NEED TO GET THE KIDS UP/OUT TO SCHOOL. I WOKE UP AT 4:50 AM AFTER FALLING ASLEEP AT 9 LAST NIGHT.

SKYE, I'M NOT "COOL". ESP. WITH MY WHITE "DOG HAIRS", AT MY TEMPLES TOO AND I'M NOT LIKING THEM. MY NEW WORRY IS MAKING SURE THE WIG COVERS THAT AREA. A GOOD WIND AND FORGET IT... I'M TEMPTED TO SHAVE THAT AREA SO I DON'T HAVE THAT TO THINK ABOUT. ALWAYS SOMETHING....

QUESTION: WHAT IS A TURTLE HEAD? I READ BACK IN THE POSTS AND CAN'T FIND IT... I SAW "BUZZARDS" AND I'VE DEF. HAD MY SHARE OF THOSE!

VIDDIE, YES...TAXOL AND HERCEPTIN MUCH EASIER TO DEAL WITH THAN A/C. PRIMARILY BECAUSE YOU AREN'T TAKING STEROIDS FOR OUR DAYS AFTERWARD AND GETTING ALL AMPED UP/CAN'T SLEEP. PLUS, TAXOL ISN'T KNOWN TO CAUSE NAUSEA...NOT THAT I HAD ANY W/EMEND ANYWAY, BUT...

Nothing against anyone who has done cosmetic plastic surgery, but I just have to say, after seeing the movie Why I Wore Lipstick to my Mastecomy and witnessing the agony of her having her implants filled, I cannot imagine ELECTING to have implants unless I had cancer/mastectomy. I've lived in the lands of plastic surgery (L.A., Miami) and you don't ever hear people discussing pain being involved. How can this be? It's kind of like you don't hear that SNB shots are excruciating (or can be for some).

Mary, my PS specifically wanted to expand me before Rads because he said that it makes the tissue less elastic, and you get a poorer result. Both my PS and the Radiation Oncologist were not concerned about my reconstruction, I only recieved one mild caution that there can sometimes be complications. Where did you hear that 50% failure figure? I find that quite alarming....not that I can do anything about it now anyway.

ISN'T THIS WHY THEY SAY YOU CAN'T HAVE RECONSTRUCTION (AT LEAST TRAM FLAP) IF YOU'VE HAD RADS...WON'T "TAKE"?

I'm almost glad I had the test without too much thought. The way things were playing out back then, it would have just been one more thing to think/stress about. I was so oblivious, I completely blanked it out until I got the results.

AMERA, THAT WAS ME WITH MY FIRST CHEMO...I THOUGHT I WAS THERE JUST FOR AN APPT. W/MY ONCO. AT CHECK-IN THE GIRL SAID "YOU'RE HERE FOR CHEMO?" I WAS LIKE "NEWS TO ME!" WORKED OUT GREAT THOUGH, BECAUSE I HAD ZERO ANTICIPATORY NERVES. SOMETIMES IT'S BETTER TO JUST DO THINGS BLINDLY.

Hi,
OOOH I was asked in the beginning of my treatment to have genetic testing. My mother had BC before 50 and now me. Everytime.. I said what for? God knows I have it why test for it? DUH? their answer was for my daughters to know. Then I came to the conclusion that YES this knowledge would hurt both of my daughters ages 26 and 18. Making it harder for them to be insured and possibly discriminating against them for a job. And both of my daughters said they did not want to go through years of a knife hanging over their heads waiting for BC. Other than having mastectomies what the heck could they do about it now? I feel terrible for them because I know they are wondering not if but when. But adding the burden of a genetic test result won't make this go away. So weighing all those factors we decided against it. It is much to hard nowadays to even get insurance and putting that potential illness out there on paper for the world to say "I'm not insuring you", was too much of a risk, and we all know they would use it against you. As soon as my anniversary for ins. renewal came up they did not hesitate to raise my monthly premium 50.00.
By the way, I had a bi-lateral mastectomy and I have no desire for reconstruction. Sounds way to painful! I am going today to get my fake boobies. If I want to wear them I will and if I don't I wont. HA! Take that in your face cancer!!!

Amera and Rebecca,

My breast surgeon validates what the two of you have discovered. In her words, "It is always a full moon on the internet so take it with a grain a salt"

Barb

TPPJ, the ampllification score is when they add up your ER,PR,and HER2 ratings and somehow come up with a number for how aggressive your cancer is. Anything over 2 is worrisome. Mine is 9. I have copies of my onc's scratch sheets on this stuff but it's all Greek to me. - Skye