NEW Oncotype Dx Roll Call Thread
Comments
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Thanks everyone! I am so glad this site is here so we can all know to ask for the OncotypeDX test. My oncologist was very against it and said it would not change her recommendation that I have chemo. I basically begged for the test. She relented. So, it was a couple of months after my DBL Mast before I had the test done and I was fast approaching the end of my window to decide whether to do chemo. Sooo glad I had the test. After all that, she said I should take Tamox since that is what the test is based on. I think the normal protocol would be to recommend an AI. I am 54 yrs old and 10 yrs post menopausal. Then she didn't want to order the CYP??(already can't remember things!) test because she says Tamox works for everyone which I know isn't true. So as soon as I mentioned to my BC surgeon that the onco wouldn't order the test and that I wanted to find a good Naturopath, she said please don't go to a Naturapath and ordered the CYP?? test. Don't have the results. I'm thinking seriously about not doing Tamox or an AI. If someone has a strong reason why I SHOULD...please say so. I am open to being convinced. My gut is just telling me that I should do all the healthy stuff and natural aromatase inhibitors and hope there either are no escaped cells or that if there are that my body causes the appropriate apoptosis. It took years to get me on a blood pressure medicine because I get all the SEs, so I can't imagine how debilitated I could get on Tamox or an AI. If I am supposed to be exercising at least 30 min per day to get rid of estrogen, how can I do that if I am bedridden? Blood presure medicine made me almost unable to get out of bed and made my muscles so sore I couldn't lift my arms. I am currently on a blood pressure patch and after 3 yrs still can't switch to the oral version of the patch on my arm. The side effects come right back. So, you can see why I am concerned about short term and long term consequences of taking or not taking a drug. Do I take the risk that the surgery took care of the cancer? Or, do I take a drug with long term risks just in case I still have cancer cells lurking around somewhere? And what about all this talk of the cancer cells eventually learning to "feed" on the Tamox? If the cancer comes back after 5 years, did the Tamox or AI prevent it for that long, or would it have come back after 5 yrs either way? I've been researching this for months. Wasted two months unnecessarily researching whether or not to do chemo. But, since then have been constantly researching because I can't trust my onco and she is in the only group in town. I don't know how long I have to make the decision whether or not to take Tamox or an AI. But, I am weary of trying to figure it out. Can I take a couple of months to think about it or do I have to decide now? I was diagnosed 4-1-09 and had my DBL Mast at the end of April. I guess I should quit whining and just be pleased that my score got me out of chemo...which I am very thankful for.0 -
Hi Luna5, my understanding is that the aromatase inhibitors have been shown to be more effective in preventing distant metastases than tamoxifen for post-menopausal women. My radiation oncologist told me that it is crucial (her words) that I take one of the aromatase inhibitors. I have been on arimidex for six months now and there are definitely side effects but so far nothing that I can't handle. I am achy (common side effect) and have had problems with trigger finger in both of my thumbs (but this is an uncommon side effect). To deal with the trigger finger I have the choice to either have minor surgery on both thumbs or to go off the arimidex, see if the trigger finger goes away (which it almost certainly will ) and then move on to try femara or aromasin. I am leaning in the direction of having the surgery because I really don't want to switch to another drug if I don't have to, as they all can have side effects and there is no guarantee that I won't have worse side effects with the other two. Better the side effects than metastatic cancer. I believe that tamoxifen is prescribed for post-menopausal women only as a much less desirable alternative if they have not been able to tolerate arimidex, femara or aromasin. While it is true that the oncotype Dx test was based on a sample of women who were taking tamoxifen, my doctors have told me that since aromatase inhibitors are more effective for post-menopausal women, the odds of getting metastatic cancer if you are postmenopausal and taking one of the AIs is going to be somewhat less than the odds quoted by the oncotype Dx test because their odds are based on tamoxifen which is less effective for us. By the way, I haven't heard of anyone who was bedridden because they were taking an aromatase inhibitor. I can understand that you would be reluctant given that you have had bad reactions to other medications, but I do think there are many women who take AIs and have very little trouble with them. Is there any way you can get a second opinion from another oncologist, preferably one at a major breast cancer center?
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Luna- I was wondering why the TX you have already had with that wild low score. What's clear to me (and please excuse me for being so blunt and sounding like I know it all, I'm just tired and bitchy) is you need a new ONC. You havent listed your location, but whereever you are, whatever it takes, get another ONC. A good ONC makes all the difference, adn this is your life we are talking about. You already know this one sucks, no wonder you are confused. A pal on another thread had to go two states away and leave her 4 year old, she's already Stage IV and could be because she didn't leave a crappy ONC. And it's not like you have to see the ONC frequently.
It's madness your ONC wouldn't order the test and you had to fight for it.
On the Tamoxifen, bottom line: why not take it and see if you actually do get the SEs? In all cases the side effects go away as soon as you stop taking it. Could be you are one of the lucky ones.
On the CYPwhatever test for metabolizing Tamoxifen... it's inconclusive. It's only useful maybe in the case of someone who isn't having the usual results. I can understand you wanting it after being denied the Oncotype, but it's kinda pointless to take it.
Your high blood pressure is a concern. A good ONC can help determine if you can take Tamoxifen.
If you are post menopausal, AIs are more effective than Tamoxifen.
It's entirely possible with a distant recurrence rate of 3% that the proper course of action is to do nothing more, as the toxicity and pulmonary issues may be a wash- but guess who could determine that and guide you in that choice? A good ONC. Everybody everybody everybody needs to get at LEAST a second opinion, and usually more. You MUST find a way to see other ONCs and get opinions at the very least.
Now I will shut my know it all mouth up and wish you good luck
And congratulations again on a fabulous fabulous Oncotype Score.0 -
Oh and yes, you do have some time. Not to goof off, but to organize appointments to see other ONCs. Remember, other cancer patients Dx'd about your time are probably still doing Chemo or RADs right now. And you had a DBL mast. So my completely civilian opinion (which plus a quarter will get you a dial tone in most states) is you have about 2 months to schedule some other ONC appointments and get some more opinions.
The definition of crazy is repeating the same behavior and expecting different results. Move on.
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Hello,
I had a hard time making treatment decision based on 25 oncotype score. Joined the study and got randomized into the no chemo group. Also, joined a radiation study and got randomized into 5 days of high dose radiation twice a day. Armidex for at least five years and going to do Zometa. Thank you for this thread.
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what a great idea!!
I was 48 at dx (0/08). ILC , 2.5cm grade 2. Lumpectomy, clear margins, negative nodes, oncotype score of 27 which was a 15% risk. chemo dropped that risk to less than 9%- so I decided to do it... my onc and my surgeon both supported that decision-but did acknowledge that it was in the gray area. i didn't care- I knew I had to do everything and have no regrets... I was otherwise very healthy going in and tolerated the chemo pretty well. I had 4 treatments of A/C and am on femara and lupron now.
It is a hard decision--- there is no one right answer for everyone. all I can say is that chemo is tolerable if you have to do it. And I made the decisions that I thought would give me the best chance of sleeping well each night. I finished active treatment in May 09 and I sleep soundly every night!!!My onc was hoping for us not to have chemo, but in the end, I made the decision myself. took me about 3 seconds after we review the oncotype results.
at 9% my risk is only slightly greater than the average woman on the street--- I really could not ask for more -- 91% chance that it won't return-- those are pretty good odds.
carole
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Thank you for your advice, Rachel. I will seek out a new Onco. I sure am tired of doctors' offices!
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Rachel...what does "TX decision" mean? I'm still not sure about all the abbreviations.
Thanks,
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Hello Everyone !
I am 44 and my oncodx score is 24. Wierd almost half (and it rhymes) my age, huh? I was so disappointed and so was my onc. We were so sure that it was going to be lower. I am so very scared to do the chemo but I promised myself I would fight, fight and fight for my future. I have lost a baby grandson, my daughter was seriously injured and I have been in a car accident. Its been a rocky 5 years. I need to hold my future grandchildren (as I wrote in my start thread back in June when dx'ed) I will get my port this friday and do T/C x 4. Every 21 days I guess. Then Tamox for 5 years? Sorry if I rambled and didnt write things right maybe but am "out of it so to say", "scared" "thought the worst was over"..... If anyone has any input that would be awesome.
The gentlest ((hugs)) to you all,
Gma - Toni
Edited to Add: 24 = 16% recurrence
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So sorry for your loss and all the horrible things that happened to you. You can do this. My score was 25 ( 16% RECURRENCE) I had the same treatments. I was 44 when i found out. ( one week before my b-day) Stay strong. Sending you prayers
Marlene
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marlenet - Thanks so much. Right before your b-day? Oh Im so sorry. Am hoping to find the same "I can do it" strength inside me today that you mentioned. Thanks for the confidence.
Prayers to you as well,
Toni
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Hi Toni, my oncotype was a 24 also, I am 45, and I will be doing T/CX4 as well. I start next week. There is a thread called "chemo starting in sept. '09". The September Sisters, are a very nice group of ladies, and I think you will find lots of support there. You have so much to fight for, and I know you will do great!
Susan
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Toni, I'm so sorry about your losses. I hope your future will hold happiness and good health. Good luck with your treatment.
Hugs and healing vibes.
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DenverDiva and carolehalston -
Thanks so much and I send the same good wishes and healing power back to you both and anyone else that is here. It is so difficult to go thru. I just need to suck it up and do it. I will check out the September Chemo thread - I need that thanks Diva !
(((HUGS)))
Toni
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samiam, what is the difference between CMF and TC? Are the side effects different? DId you lose your hair with this treatment?
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Hi ladies,
I just found out that I may be eligible to take the Oncotype DX test. I was considered stage 2a until I got the pathology from my surgery on 9/1 and found out that my tumor was a third the size that they thought that it was. They moved me from stage 2a to stage 1. As a stage 2a, I was told that I had to do chemo. Now, as a stage 1, I'm being told that I MAY not need it if my oncotype score is low. For 5 weeks I've been mentally preparing myself for chemo. I've picked out my wigs and hats and have studied up on the subject. I'm apprehensive about the oncotype dx test b/c an intermediate score isn't conclusive and I may be in a situation where I have to make a decision. It seemed so much easier when I believed that I HAD to have the chemo. I meet with my onco next week so will share my concerns with him and hopefully, he had help me work through it. I'm so glad to have found this thread.
))Lisa
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Lisa, I know how nervewracking the waiting is. Good luck to you and I hope you get a low oncotype score.
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Lisa, that is good news to drop down a stage. Look at it this way, you were already mentally prepared anyway to do the chemo - you might get a low score and no chemo - what a terrific relief. I am keeping my fingers crossed for you. That gray area is tough for decision making.
big hugs
Helena
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Hi Lisa, It was probaboy not the staging numbers but the supposed size of your tumor that made your doctors think chemo was necessary. There is no rule that Stage 2 tumors require chemo that I know of, but a 3cm ductal tumor would be of concern.
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Just fyi,
There are many of us who have Stage 2 IDC and low Oncotype scores who have not had chemo. That is the reason for the TAILORX study which states:
Adding chemotherapy to hormone therapy in the adjuvant (after surgery) treatment of women with breast cancer has been shown to reduce the risk of breast cancer recurrence. However, the additional benefit provided by chemotherapy is small for women whose lymph nodes are free of disease and whose tumors are positive for the estrogen hormone receptor. Because chemotherapy can cause serious side effects, doctors want to find ways to identify patients who will benefit from chemotherapy and those who may be able to avoid it because of little added benefit.
Melissa
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Also,
After you obtain your Oncotype score have your onc input your information into www.adjuvantonline.org to see exactly how much your benefit of chemo would be. I would have a 1% less chance of recurrence if I had chemo. In other words, chemo would help one woman out of 100.
Melissa
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Oh Luna- TX = treatment... I think
Good info on this thread!
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I was told today by my cancer dr's NP that before the Oncotype technology came into use, bc patients with a tumor larger than 8mm would take chemo. My tumor was 1.2 cm so I would have fallen into the chemo category. Since my oncotype no. was 9, I'll skip chemo and take Arimidex, which won't be any picnic judging from what I've been reading on the Arimidex threads.
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Thanks for all of the insight Ladies,
Unfortunatley, I had to have a re-excision yesterday and my doc told me that I am now back at stage 2a. They originally thought that I had one tumor that was 3.8 CM. Then, when I had my original sugery, pathology said it was only 1.3 CM. My surgeon did more checking as she though that it was odd. She found out from pathology that there were 2 tumors - 1.3 CM and < 1 CM that were connected by a thread. Pathology only listed the largest of the 2 tumors in my path report. Apparently, b/c they are connected by this so called "thread", they are now counting the two tumors as one. Along with the thread, I believe I am now over 3 CM again. This stuff is so confusing. I do meet with the Oncologist next week so I hope to clear some of this up. Thanks again ladies. I'll let you know what the Onco says.
Lisa
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BoyMom2009,
My initial diagnosis was so confusing, first it was less than 1 cm then over 2 cm. Many women on this website have the same experience. In other words, they don't know until the final path report. Good luck!
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My initial diagnosis from the needle biopsy was 6mm. After the MRI, it grew to 8mm. After surgery, the first pathology said there was nothing left of the tumor. At that point, tissue reserved from the needle biopsy would have to be used to send off for the oncotype. Then the later pathology report came in that the tumor was 1.2 cm. The sucker kept growing with additional reports.
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Thanks girls,
I guess I'll have to wait and see what pathology has to say after my re-excision. Cancer SUCKS!
Lisa
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Toni - why did you decided on Chemo? Just curious what criteria you used. When I was deciding, my doctor told me if 25 women are treated - 1 will benefit, 1 will have serious side effects and the other 23 will have no benefit. I am 48 - stage 1, 1.6cm, grade 2, no nodes.
Best of luck - MAK
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MAK-
Gut? Thats the only thing I can say. I thought long and hard before the tumor was sent for testing and told myself I would do anything it took to fight this disease. Sheer terror? My onc told me there are no numbers - they cant prove results of chemo vs no chemo in my onco range. Im 44 and have fought a hard life for 5 years - many tragedies. My onc (and 2 more) said put 10 of us in a room w/ your numbers and nine of us will tell you do the chemo. Im not even getting it at his clinic so... no money for him anyway. I knew in my heart I would always wonder. All docs are different. Im sure your onc and you made the right decision mak.
Take Care-
Toni
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Hi everyone. I am so sorry to have been out of touch on these boards for so long. I finished my chemo in June and just had my exchange surgery two days ago. I find, for me, that it is better for my mental health right now not to be on the boards and thinking about cancer all the time. I have four young kids and a job I need to put my focus back on.
If anyone would like to take the Oncotype Dx thread over from me, I would be grateful and you would be doing a huge service to the community. It's really just a matter of cutting and pasting the data from the original post into a new thread started by you so that you can edit it and keep it updated.
I know how helpful this thread can be to people who are struggling with the whole oncotype process, so if anyone wants to take it over, please let me know.
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