I was so relieved but now...HER2+ and scared again

Bonnie02

I have a slightly different problem, I was her2+ and was told that I should have the herceptin, after they did the heart scan to see if I could have it the answer was no because my heart is already pumping to slow. I heard that after the herceptin you heart will recuperate on its own. I asked if this was true and was told yes but in the meantime I could have a lot of leg  and feet swelling and probably shortness of breath. Going to have another heart scan on Sept. 5 to see if it is the same or not. Has this happened to anyone else.  My daughter died 8 years ago because she was her2+ and her cancer turned to other parts of her body and this really bothers me.

Thanks for listening

Bonnie

BDB

Herceptin is a magic bullet! You are doing all of the right things so that you will be cancer-free for the rest of your life. Herceptin is truly a gift. The cancer that you HAD was aggressive but it is gone now and did not travel anywhere. Herceptin is just going to be such a wonderful preventative measure

ihope

Dear jc135,         I am Stage llA, 0/8 nodes, ER+, PR-, HER2+++, Grade 3

I am seeing one of the top oncs in Miami and am currently on Taxotere/Carboplatin/Herceptin.  I too had a feft mastectomy.  I have my third round tomorrow.  I have not had one serious side effect since starting on May 14 .... just taste buds gone for about eight days then back to normal and MOST but not all, of my hair is gone...the hair loss for me was the most depresssing.  The Herceptin is critical to our becoming NED!  Wouldn't it be nice to dance with NED for the next 20 or 30 years?  I know he's good looking...but not as wonderful as my husband!  I have not had any problems so far with my heart!  As BDB wrote: Herceptin is a magis bullet!

 I, like you, drove myself crazy with trying to figure out which treatment was best.  For me, finally getting started with chemo was very empowering.  If you feel comfortable with your onc (meaning you trust her because of her recommendations or because of who she is affiliated with or perhaps you just feel a really good connection with her) then GO WITH IT and don't second guess yourself or your doctor!  There are a couple of standard protocols...and each has its own benefit and/or drawback!  Breastcancer.org, by virtue of everyone who signs on, is a great VAST and UNPAID research department...not to mention the great doctors who keep us up to date on this website!! 

With your current knowledge you will make the correct and right decision for you.  Pray, meditate, go for a jog....do what is best for you to do to make a decision!

 I have been coming to this website since I was diagnosed...I have never written until I read your concerns.  I let fear and over researching overtake me for a while so I understand to some degree how you feel...I have a 12 and 9 year old and I'm 51.  Don't let the fear take over...you already have alot of knowledge and knowledge is POWER.  But there also comes a time for a decision!

 Hugs and Prayers to you and to all who have BC!  It stinks...but we are not defeated!  

The task ahead of you is never greater than the power within you!  

suemed8749

ihope: What a beautiful post! I came here to check on jc135, and was so touched by what you wrote. FYI: My diagnosis is much the same as yours (except ER-), I'm seeing one of Phoenix's top docs, and I did Taxol/Carboplatin/Herceptin. Like you, I had few serious side effects, although I got pretty anemic toward the end (and stubbornly refused a transfusion or Aranespt(sp?) so I was pretty exhausted. I'm five weeks out from chemo, just doing Herceptin every 3 weeks, and feeling good.

I'm 54 and have a 13-year-old , so we have a lot in common.

jc 135, give us an update if you get a chance.

Sue

jc135

ihope: Thank you for your encouraging words. I am closer to a decision and in part, it is very much as you say: I am trying to go with my instincts, and to have faith in the oncologist, who keeps telling me that either choice is fine for me and that it is "splitting hairs" (that's a direct quote) as to which may or may not be better. I truly believe that they (the medical community) don't really know what's best, there is no clear-cut "best evidence", but that any of these protocols will give me an equivalent shot at NED down the line. After all, I am not dealing with some little community hospital that may not see many patients, but with a major player in the field--Cornell/Weill Medical Center/ NY Presbyterian Hospital. I gotta believe she is being straight with me. So, at this point I am strongly leaning towards TCH for its lesser toxicity, (and more convenient schedule for me) and will probably tell her my decision right after the holiday weekend.  Thank you for yet another vote for TCH

Sue, thanks for thinking of me. I am definitely still here but actually had moved this particular dilemma to another thread---I've been posting on the ACTH vs TCH thread since that's my focus right now. You can catch up with my story there  but as I said above, I think I am going with TCH....at least that's where my head's at today, who knows about tomorrow!

I am also in your age group gals--51--but with no kids. And no job at the moment, which has made this a bit easier to deal with. I can't imagine juggling this with working! 2008 will go down in my record books as a truly lousy year--lost my job in January, got cancer in June, my 19-year old cat died in July (yes, really, just a few days after my surgery)....you gotta laugh, its like a bad movie....no one would believe this plot! I just hope it has a happy ending

jc135

New worry today--my oncologist called and said she decided I should have a PET/CT scan after all. Originally, she said that she didn't routinely give them to early stage/node-negative patients. I asked her what changed her mind and she said that my prelim bloodwork came back with a VERY slightly elevated liver enzyme, which she said "was the least reliable indicator" but just to be sure to cross all the t's and dot the i's she felt I should have the PET/CT scan. So now, I'm newly freaked out even though she said the chances of finding anything are extremely slim.

Just when I was calming down about the chemo, and getting my head wrapped around it, now this new anxiety   Now, lots of things can elevate liver enzymes, including taking lots of Tylenol, which I was post-surgery. Still, just so anxiety provoking! And I've read that these scans can produce false-positives, more to worry about.

I am wondering if many of you had PET scans before starting chemo?

suemed8749

jc135: Yes, I had one before chemo - my onc does them fairly regularly - and it was the most stressful thing I've been through so far, I think. The actual procedure is not that bad, of course, but just the worry associated with it. Getting the "all clear" report was so reassuring.

You have nothing to worry about, I'm sure, but I know the anxiety that this testing creates. Look at it this way - you get to relax for about half an hour in a recliner in a dark room then lie on your back with your eyes closed for awhile. See - it's like going to a spa or something!!!!

One day at a time, one day at a time.

Sue

lfasano44

Not to worry, I did my scans and they found something on my liver and I had to have it biopsied!!!!  Turned out to just be fatty tissue, but the waiting for the results was the most awful part.  Try not to worry, I'm sure it's nothing.  The docs just want to be sure!  Good Luck

jc135

lfasano44, that's exactly my fear---that they will find someting suspicious and I'll need more tests, more anxiety, more worry! And then of course it they really do find something serious....I don't even want to entertain that thought.

On the other hand, as Sue says, if I get the "all clear" I'll feel so relieved.  I suppose there is always that niggling doubt in my mind that wonders if its already spread. But I sort of would rather not know.

I spoke to the oncology nurse yesterday and she told me the enzyme was 1 point over "normal" and she didn't think it was significant at all. In fact, my research shows that depending on where you look, the normal values differ, and in most cases my value falls well within! So I don't really understand why the doc changed her mind. Of course, she is now on vacation until next week. And I've set my PET/CT scan appt. for Tuesday...may as well get it over with asap.

jan125

Herceptin is a miracle drug. I was stage 4 and noe NED for almost 2 years!!!!

My onc. said our chances of doing well with treatment are even better than HER2- people because of Herceptin!!

Jan

jc135

Well, just to update, I've decided to cancel the PET/CT scan--at least temporarily. I've done some futher research and discovered a very interesting fact---the antibiotic I have been on (Keflex, for three weeks---two weeks when I had my blood test) is known, specifically, to cause altered liver function tests and specifically elevated serum alkaline phosphatase which is what was elevated  (by one measly point!) in my case. IF this was the sole reason that my onco decided to order the PET/CT scan, then it would seem prudent to me to repeat this simple, non-harmful blood test before going to the extreme of a PET/CT scan which exposes me to potentially harmful radiation, not to mention such extreme anxiety that I had a complete meltdown yesterday (scaring my poor hubby to death.)

I am going to insist on a repeat blood test. If that still shows the elevation, well then I'll reschedule the test. OR, if she can give me good solid evidence that it is necessary for some other reasons. Otherwise, I'm going to refuse it.

Meantime, I've made my decision to go with TCH over AC-TH.