Be careful what you pray for....

BonnieR · 07-19-2007, 01:27 PM

I have been on the fence about what follow up treatment I should be taking and have been told everything from chemo to nothing needed. So I decided to take the OncoTypeDx test and prayed it would be a sign...
Today got the results: 36, high risk. So suddenly, from being NED, I am being advised to begin Chemo, THC for 4 to 6 doses followed by Herceptin. My head is spinning! Any thoughts would be appreciated. Wht has been your experiences on this combo??
Better update my profile.....

Karen Weixel · 07-19-2007, 01:49 PM

Bonnie,

I think you are NED... the test came back high for possible recurrence. Like you, I had a pretty small tumor, node negative (5 sentinal nodes removed) negative for lymphovascular invasion, grade 3, er/pr+ and Her2+++. I never had the oncotype DX, I just decided to throw the kitchen sink at my cancer. I did dose dense AC and T, 35 rads, a year of Herceptin (I had to fight for it) and now I am on Aromasin for 5 year.

I am almost positive from what I read on your post that this is preventative chemo.

Hope this helps.

Karen

BonnieR · 07-19-2007, 03:12 PM

Karen thank you. I do understand that I am considered NED at present. I guess I was just shocked at the turn of events. Immediatly after surgery I was told I need no chemo, certainly Femara, and MAYBE, Herceptin. Which is the fence I was sitting on. Now the OncoType puts things in a different light. And I am new enough at this that I did not fully appreciate that chemo was used so extensivly as a preventative. I have alot to learn.
So, who here has been on the regieme being suggested for me. THC???

MarieJZ · 07-19-2007, 03:32 PM

talk to jean..... it was her experience that the size of the tumor was not nearly as significant as it's biological characteristics...

BonnieR · 07-19-2007, 06:06 PM

Which Jean? There seem to be a few! Maybe she will see this an reply. I am so grateful you are all here.......

07-19-2007, 06:19 PM

Bonnie,

If by THC, you mean, taxol, carboplatin, and herceptin, I was. If you mean Taxotare, I was not.

I also was not expecting to have chemo (very tiny invasive cancer 5mm, stage 1a, Grade 2, no nodes and no vascular involvement). Ki67 was 20% which is intermediate risk. Didn't do Oncotype test (not recommended I believe for ER/PR-, HER2+++; I though everyone with HER2+++ was considered high risk on Oncotype, but may be mistaken).

Original decision, made jointly with oncologist, was to do herceptin alone. However, my 27-29 came back mildly elevated, so I decided to do chemo after all.

Everyone reacts differently to chemo, and I was 65 and it's more difficult as you get older, so I had a tough time and stopped after two. However, I made some mistakes, including not getting all the meds (for nausea, diarrehra, constipation (the worst for me), and pain) before I started. I think if I had these medications at home, in case, I might have stuck. But other women have had an easier time of it. Just about to finish herceptin--one more to go. Relatively easy, although I always have diarrehea, but luckily no joint pains, etc. If you want any more info on this particular regime, send me a private message or email.

Kate (Tousled) had taxotare and she can advise you on that--she's very helpful.

BonnieR · 07-19-2007, 06:37 PM

Grace, I did not know that, about HER2+ always meaning a high risk on the OncoType test. Why give it to someone in this category then? That is discouraging. It is an expensive test to administer if the result is a foregone conclusion....

07-19-2007, 06:51 PM

Bonnie--as I said I could be mistaken but I remember reading that on this site and I think also on another. Also "Ask an Expert" John Hopkins said Oncotype not given for ER/PR-. Are you ER/PR-? I don't remember.

Jean may know answer to this one. But I wouldn't be discouraged, as you have an excellent prognosis despite the HER2+. My prognosis on Adjuvant Online is 4% mortality in ten years (12% from a cause other than cancer) and 18% for recurrence.

My oncologist recommended chemo for Day One even before elevated markers, but others on tumor board said no to chemo--tumor board was evenly divided, but I suppose this doesn't help, as you want something to give you clear direction. It's really tough making these decisions. Yesterday I decided not to do a PET/CT scan which my doctor was ordering at my request, and even that took a great deal of thought and weighing and judging.

Good luck whatever you decide.

Alice · 07-19-2007, 07:15 PM

Where in the range does a score of 36 lie? I have read about the onco type test but because it does not aply to me, I don't know the numbers. I was just curious. If I can, I will try to do some looking for you, as I am on the computer frequently.
Alice

Alice · 07-19-2007, 06:31 PM

Hi,
I am new to the thinking of chemo as preventative therapy. The onco test was also not available to me, being both er and pr negative. I would like to advise you but I have a different senario and it wouldn't be helpful to you. I just want to tell you to be as informed as possible and to not react or make decisions from fear " lots of luck on that one". This site has many people that have lots of knowledge. They have helped me and I am sure they can help you as well! Please let us know what you decide, we are all rooting for you!
Alice

janet11 · 07-23-2007, 06:05 AM

Bonnie, I'm one more who went through 6 cycles of TCH (Taxotere, Carboplatin, and Herceptin) and found it very doable. Good luck with whatever you decide to do!

Janet

BonnieR · 07-23-2007, 04:55 PM

I have had alot more "drama" since I visited here last! I had received a second opinion from a City of Hope doctor awhile ago so I sent her the recent OncoType test result. She felt it was "invalid", depending on the tissue that was sent. I was unable to follow her explanation of the biology involved but she kept saying it was important to know what material was actually sent. So I went to the pathology lab today to have the director of the lab (who also did my reports) to explain this all to me. And you know what he said ? "Because you were coming in today, I reviewed your slides and I found an invasive tumor that I MISSED the first time"!!!!! Never would have known this except for me going there. (This is the same lab that took TEN DAYS to mail out the OncoType tissue because the girl who does the mailing was on vacation!). He did say that the tumor was very small,, residual invasive. But high grade. I am still probably Stage 1, maybe T1B (what is that?). Also said Oncotype is "waste of time because I had high grade to begin with". He said my situation, patients in the grey areas, are the worst to know how to treat because it is so ambigious....a "crap shoot" to use his term. He also said that sentinel node negative is not as helpful information as is sentinal node positive. (a sure thing)
So here I sit, on the fence. Or with one foot on a banana peel.....trying to establish some equanimity......
Thanks for listening....hope it made sense....I am not sure it did for ME!! lol
Bonnie

Hopeful · 07-23-2007, 05:50 PM

Bonnie,

So glad you kept questioning the lab so that this came to light NOW. T1b is "cancer staging speak" for an invasive tumor between 5 mm and 1 cm in size, so very small. I know you must feel like Alice falling down the Rabbit Hole about now. I guess the thing to do is to tell your oncs of the revised pathology as soon as the director gets you a revised report - he IS going to do that for you, isn't he?

Hopeful

BonnieR · 07-23-2007, 05:58 PM

I had him FAX the report across the street to the CCC where my onc is. He said she will be all over this new information. And I made him FAX the City of Hope also to give them some clarity...
When I walked into his office he said he had more news for me. He was typing something and actually asked me "how do you spell 'brain'?" I thought for a minute that he was talking about MY report!! What doctor cannot spell "brain"? I asked him if he had spell check on his computer for the more technical and challenging terms in his field and he said yes but HE had to input the words correctly to begin with.... Figures.....

07-23-2007, 06:24 PM

Bonnie,

Are you planning to send your slides to a different lab for a second pathology report? This pathologist sounds somewhat . . . careless. . . . dim. I would think considering the issues you've had that your insurance would pay for a second opinion. Also, if he had this opinion about oncotype as it relates to your pathology, why did he send the slides out in the first place? Didn't the oncologist and the pathologist work together? I believe from what I've heard that the test is quite expensive.

As Hopeful says, it's still a very small cancer and, in fact, Adjuvant Online doesn't distinguish between 1a and 1b in prognosis. Also, did he give you what you went for: did he tell you which tissue was sent for oncotype testing? I hope so. None of this is what you need now, but it'll be over soon, you'll be back home, and life will start to seem normal again.

BonnieR · 07-23-2007, 06:42 PM

Grace, he DID say that the City of Hope doctor was mistaken in her assumption of what tissue was sent. But honestly, after the NEW news, that became rather moot in my mind. My numb mind.
I think my onc ordered the OncoType as a tie breaker since no one knows what to do with me and I asked about it. No one told me that it was probably not indicted. Nor the cost. Extremely expensive. My first clue was when the company that conducts it phoned me offering a payment plan and/or financial assistance to pay for it!!!!
I am considering going to see a Dr at UCLA for yet another thought on all this. But it is looking like chemo is inevitable. I just have such trouble coming to terms with using a treatment for something that I dont even know exists!!
I think that your suggestion is a sound one. Get those slides reviewed by someone else....
I might add that this is also the pathology dept that told me to return in 6 months for a repeat mammogram. I decided to get a second opinion of that which resulted in a biopsy and the dx....
At least the CCC where I would be treated, although part of the same hospital campus, has an in-house lab. Although he is the overall director, I think....
thanks!

BonnieR · 07-25-2007, 06:00 AM

Maryanne, what is hand foot syndrome? The "numbness" or tingling that was mentioned to me?
Yea about your hair! Is it the same or different that before?

BonnieR · 07-25-2007, 06:23 PM

Okay, everyone, I am going to take the leap tomorrow morning. I talked to the ACS today and we reviewed my Adjuvant scores. And in general discussed the various pro and cons of the features of my pathology. They also suggested asking onc about Glutamine for the few days after treatment. And quinine water. The City of Hope doctor even phoned today to see what was going on and I told her my decision for chemo, in the face of the new findings. She agreed that searching for more opinions won't really help since I am in such a gray area. Nothing is obvious about it. Her major consideration was that I was satisfied with my decision. I think "resigned" is a better description!
So think good thoughts tomorrow morning!!!

tousled1 · 07-25-2007, 06:37 PM

Bonnie,

Sending you positive thoughts for tomorrow. Your oncologist was right in saying that you had to be happy with the decision you make. Remember you do have a say in your treatment plan. Stay informed. I'll keep you in my prayers.

07-25-2007, 09:45 PM

Hand/Foot is a tingling numbness in toes or fingers, from taxol I think. My two big toes have no feeling and some of the smaller ones are a bit numb, but not totally. It's nine months since chemo, so I don't think it will go away, but I don't think about it very often--minor side effect, for me at least.

My hair is growing in slowly because of herceptin, but is curly and thicker than before, so that's good news.

My center recommended L-Glutamine Powder while on chemo, and I used it faithfully. I think it helped. I'd say use it, as there have been studies that show it helps.

Good luck tomorrow.