Be careful what you pray for.... - Page 2

harrie · 07-21-2007, 12:45 AM

Hello Bonnie,
I did the 6 rounds of TCH (taxotere, carboplatin, and herceptin) and I am very glad that I did! If you look at my profile, I had a very small DCIS invasion, very similar to Jean's and Melinda's. Yes, there were days when I felt pretty crappy, BUT it was all manageable. It was an aggresively conservative choice to undergo chemo, but I have absolutely no regrets. I worked full time during the entire treatment and exercised and did yoga pretty much throughout the course of tx. We did it, you can do it, and if you need any suggestions on managing the side effects you should have no problems finding help over here. I finished my TCH 5/11 and I feel absolutely great.
All the best to you.....
Maryanne (harrie)....

BonnieR · 07-21-2007, 08:40 AM

Wait, there's more! I sent the OncoType result to a oncologist who I used for a second opinion and she felt it was invalid in my case because the test hinges on Invasive ductal cancer and my small tumor was mostly DCIS. She tried to explain the biology to me, and I think I am a pretty smart person, but I could not begin to understand her. She offered to contact my primary onc to ask again about the source of the tissue that was sent. And to suggest a second look at my original slides from the biopsy where all my cancerous tissue was removed, supposedly....
I am so confused right now. IF I was to start chemo next week I would need to stop my Femara NOW, try to get dental cleaning, all the practical things you have suggested here...and do a completly new mind set.
But chemo is not to be decided lightly either, if it is not indicated. I am now wondering if I should just do the Femara and add the Herceptin which was the original plan.....
We are also moving next week...
If you want God to laugh, just tell him your plans......
thank you all for being here. I know there are others struggling with bigger issues but this is the biggest thing I have ever had to decide....

AlaskaAngel · 07-21-2007, 09:59 AM

Making the decision IS tough. But whatever decision you make, the people here will support you.

It is only on the last decade or so that computerization and things like the Human Genome Project results have been available for cancer research. Some of that research is now starting to influence treatment and provide less toxic treatment choices. Without those changes in information technology, treatment has been quite limited and basically chemotherapy with or without radiation has been the only shot in the dark that was commonly used. What do oncologists have to gain from recommending against doing chemo? When chemo is recommended they have nothing to lose. No one blames them if it doesn't work.We tend to believe that it takes something really toxic and nasty to handle cancer. That is a mindset of fear, and not necessarily a reality. There are indications that the risk/benefit of chemotherapy and radiologic treatment and repeated radiologic testing long-term have worse outcomes. Some oncs have recognized that, and in the case of patients who are most unlikely to benefit, are simply trying to make sure those patients are not overtreated and ending up at HIGHER risk rather than lower risk.

Remember, the first people to benefit from Herceptin were the ones who believed that it could offer something better than conventional treatment. All the research that creates better and less toxic treatments won't make a difference if we aren't listening to advice about them.

There is no reason to rush into making the decision. Take your time, and research it as best you can.

AlaskaAngel<O

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BonnieR · 07-21-2007, 12:34 PM

Thank you Angel!
I had a moment of clarity while driving today. (After I drove past my exit in a fog! lol). I have been feeling great pressure to DO something. Or I should say, I am being scheduled for treatments I have not decided upon yet. I know time is of the essence but since at this moment I am considered to be NED, and since the suggestions of Herceptin with or without chemo are for preventative measures I am wondering if I have time for another opinion. Since no one seems to agree what is best in my case. Do you have any experience with how long I might delay this process? It has been 2 months since my bilateral mastectomy. I am taking Femara.....
Have any of you waited in these circumstances?

AlaskaAngel · 07-21-2007, 03:03 PM

When I found out chemo/rads/hormonal treatment was recommended for me in 2002 I tried to get any kind of an answer from my oncologist as to whether delay would in fact make a difference. He would not answer that question. It seems logical that the sooner the better, but has that been proven?

Here are 3 different studies:

http://www.asco.org/portal/site/ASCO/menuitem.34d60f5624ba07fd506fe310ee37a01d/?vgnextoid=76f8201eb61a7010VgnVCM100000ed730ad1RCR D&vmview=abst_detail_view&confID=34&abstractID=320 25

http://www.turkjcancer.org/text.php3?id=7

http://jco.ascopubs.org/cgi/content/abstract/24/30/4888?ck=nck<O

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AlaskaAngel · 07-21-2007, 03:21 PM

http://findarticles.com/p/articles/mi_m0PWK/is_2006_May_10/ai_n17214894
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"Adjuvant therapy usually begins between two and 12 weeks after surgery. It includes chemotherapy and/or hormone therapy, as well as radiation therapy."<O

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BonnieR · 07-21-2007, 03:21 PM

Angel, your name is appropriate!! It was so thoughtful of you to send those links. In quickly reviewing them it looks like, as usual, opinions differ! But it seems I might have a bit of a window still. I printed them to study.
My onc would only say that is stands to reason that it is better to be going after one cell early than many later. Which we all would agree with...
thanks again

Lani · 07-21-2007, 03:29 PM

GO TO THIS LINK AND CLICK ON THE AUDIO INTERVIEW WITH DR. JULIANNE SMITH OF PALM SPRINGS. She is an oncologist who had breast cancer herself and had chemo and herceptin and continues to practice while on oxygen due to congestive heart failure. She had lymphoma in childhood, so the radiation therapy from back then, plus chemo, plus herceptin were too much for her heart. She is empathetic and knows what it is to go through chemo, having gone through it herself. I have met her and she is just the type of person you could talk to/with who could provide an opinion based on her knowledge as an oncologist and her knowledge having been on the receiving side of the treatment. Any information she could provide you with would be doubly useful as it would come from someone who had "been there" and that might calm you. I don't know if she is still on oxygen, what has happened to her since 2005, but she was very easy to talk to (I sat next to her at a luncheon at a conference)

TCH is much easier on the heart than Adriamycin and other anthracyclines were, so you are lucky the trend is now to TCH.

Click on her interview and don't be scared--as others have said TCH is easier than AC from their experiences and her situation was truly unique (history of childhood cancer, radiation, etc)

I am sure now that more time has passed and herceptin has been approved (she got it off-label) she has more to say!

Hope this helps

BonnieR · 07-21-2007, 03:33 PM

Lani, thank you so much. But I don't see the link. Can you post it again??
She does not come up on a Google search....

harrie · 07-21-2007, 05:43 PM

Whoa Girl!! You sound like you are on the same roller coaster ride that I was on!! I was right there 6 months ago where you are right now....Like: bad news (malignancy), good news (small invasion), bad news (what they recommend chemo???), ....know what I mean? The bottom line of the good news that I kept telling myself is that if it were not for the fact that our diagnosis showed such a small invasion, it leaves me with more choice in the matter. Another thing is either option is a win-win situation (to do or not do chemo).
Regarding the Oncotype Dx, mine was mostly DCIS with a 6mm invasion. Mine was considered a good candidate for the Oncotype testing according to my oncolgist.
I know it would not have been a bad idea to forgo chemo. I know that doing chemo cuts my relatively low recurrance score down a bit more. So I decided to do the TCH. I stopped my Arimidex, did my 6 txs of TCH, and now I resumed my Arimedex and am doing herceptin alone.
I had my surgery mid November, 2006, and I began my TCH end of January. In between that time I was on that same roller coaster ride that you are on. I flew from Hawaii back up to CA for a consultation with Dr. Pegram at UCLA regarding the recommendation for chemo since he was the expert with the HER2. My meeting with Dr. Pegram is what gave me helped me make my decision.
I feel good about my decision. I did the chemo. I feel great.
Maryanne (harrie)

07-21-2007, 06:33 PM

Harrie--every time I see your second profile, I think I'm looking at mine, even to the 4.7 amplified. And I'm right breast, not left. Glad to hear you're doing well.

harrie · 07-21-2007, 06:44 PM

Grace, I find it very reassuring that there are others in my situation making similar decisions. It was a tough decision to make and at the time I knew of no one like me. This online site that I found by accident (no one told me about it) has been absolutely wonderful for me.
Maryanne

Lani · 07-21-2007, 07:13 PM

http://www.breastcancerupdate.com/do.../7/default.asp

BonnieR · 07-21-2007, 08:11 PM

Got it Lani. thanks!

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!