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Be careful what you pray for....
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..... |
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 |
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??? |
talk to jean..... it was her experience that the size of the tumor was not nearly as significant as it's biological characteristics...
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Which Jean? There seem to be a few! Maybe she will see this an reply. I am so grateful you are all here.......
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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. |
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 |
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....
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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. |
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 |
Very Similar.....
Dear Bonnie,
I read your post...and like you I was told that I did not need chemo/herceptin. When I was dx. 4/05 size of tumor and node status was the determining factor for treatment. When I did my research on Her2...I was very unsettled. I even had to fight to have the Oncotype DX test -(back then it was not being used as a standard of care) which now is being used at Sloan in NY... Mine came back high risk also. Like you the onc. in NY then changed treatment and said chemo A/C to be followed with Herceptin. I then decided to see Dr. Slamon...the Father of Herceptin. He told me that my KI -67 levels were high - therefore I did not need the Oncotype DX test to tell me the test would come back high. There are women who will come back in the low or med. range. depends on the KI-67 level. Unfortunately her2 is aggressive and likes to travel. Knowing your pathologoy report is very important. The grade of your tumor, the KI-67 levels, in short - the size of the tumor is not the key, more so the personality of the tumor. Node negative is a favorable dx. also - but there are millions of cancer cells in a small tumor, who knows if a tiny micro seed passes through a node and we all know that cells could pass into the blood system. The most common way is through the nodes - but that is not a certainty. Of course your head is spinning, that is only natural. There is so much information to absorb and it is all very frightening. But realize that this diagnosis does not mean instant doom. Now is the time to make careful decisions. The TCH is very doable and many ladies here on the board have had this treatment. It is now considered a standard of care for early stagers. See the link I have attached for you. Your onc. will prepare you for the treatments with the meds to counter the side effects. You will feel tired from the treatments, but many of us worked right through them. Do not fear the TCH treatments, rather look at them as part of your way of crushing this disease right out of your body. I had 6 treatments of TCH and then herceptin for one year. I completed my year this past May. It goes fast - it will not seem so as you start, but it does. Right now your spinning due to the new information...you were wise to have the test - for it proved you did need additional treatment. In the early days everyone worries about what is going to happen and how can they handle it. As I said the TCH is very doable. When I was first dx. I knew very little about bc, I knew I didn't want it! But by learning everything I could, I started to take control and calm down, sort things out, and make the best decisions for my health. You will also...I am sorry that you have been dx. and need this wonderful board. This is the very best site and you will have all the support you need. I am here for you...and all the other beautiful ladies are also. I have attached a link on the TCH trials which will give you additional inforamtion. http://www.medscape.com/viewarticle/520244 Sending you hugs, Jean |
Tch
Bonnie,
I have just completed the taxotere, carboplatin and herceptin(TCH )regiment. (6/19) Check my signature to see any differences we might have. I was under the impression that I too would not need chemo right after surgery, so I can feel your disappointment when it was suggested to you. Someone told me that the good news is that an ONC will not tell you what to do and that the bad news is that your ONC will not tell you what to do. Being HER2+ was the deciding factor for me. My onco score was 23... middle of the road. My ONC said that if I was 20 yrs young he would be advising me to have chemo, and if I was 20 years older not to. So I sat on the middle of the fence and decided that I wanted to treat this beast with everything available. Now as far as TCH... I know that everyone experience is different, but I have found it to be completely doable as they say. I never missed a day of work with the preventative meds such as Zofrn for nausea, ativan for coming down off the decadron. I felt less than 100% about 2 days out of 18... my regiment was every 3rd week. Part of that was the Neulasta shot the next day to keep my white blood cell counts up. In the end its your decision... and I will be here as well as ther others that have gone thru this to help in any way we can. Keep the faith! Melinda And yes Jean was my angel, when I started this and Harrie another who has just completed it as well, to name a few. So if you decide to go this route, you will have plenty of company |
Experience on TCH treatment.
Bonnie,
I am sorry you also wanted to know about TCH and effects. Well you will loose your hair...no biggie. It grows back. You will gain a few pounds due to the meds. No biggie you will loose after treatment. You will feel tired like a flue two days after treatment then will rebound in the next two to three days. The anit nausea meds will help prevent those side effects....Just take them even if you feel fine and you may think you don't need them. Take them anyway and stay on them...once the nausea starts it takes hold and then you have to catch up. Drink water and keep your body hydrated all the time. You must flush your body from the chemicals after treatment. Eat protein rich foods. You will have a metal taste esp. on certain foods, I found this happened on my salad dressings, certain foods that I enjoyed - the taste was destroyed during chemo. I found that sherbert was refreshing. Have your teeth cleaned and checked prior to treatment. I stopped all manicures and pedicures during treatment to avoid any infections. Do not expose yourself to people who have colds. Your immune system will be lowered during treatment. I had my treatments during the Spring and Summer - so I did not go through a flu season. If you are working make sure you clean your phone and computer each day with anit bacteria wipes. I also eat yogurt each day...I never had a mouth sore. You will feel aches and joint pain, I would take Alieve. It is Important to exercise and take walks in the fresh air. I did not have a port - all infusions were via my veins. I used to have my treatments on Thur. this way I had the weekend to rest and usually by Monday I was feeling better. But if I needed to take another day I would just take it and rest. Friday I would feel fine by Sat. morning it would start to hit and I would feel tired and drained. This would last for about two days. You may need a mild sleeping pill for the pre-meds which will keep you wired and you may have trouble sleeping. The steriods that you will take the day before treatment, the day of treatment and one day after are the meds that can keep you awake. The mild sleeping will allow you to rest and you will not be exhausted from being awake and then crashing when the meds are done. I hope this information helps. As I said it is doable. it may sound like a lot to deal with...but you can do it...just concentrate on stomping on this disease and this is the way to do it. Hope this helps.... Kind Regards, Jean |
For taxotere, use Hard as Nails on your finger and toe nails before every treatment, with tea tree oil on the cuticles! It will help save your nails from yellowing, splitting, etc.
If it is taxol, take Glutamine powder 3xday (in a shot of juice) to help mitigate the neuropathy in the fingers and toes... |
Hey Brenda...
Love your photo....You look beautiful!
Regards, jean |
Thank you all SO much. You have already made such a difference in my life. Just think how important you are going to be in coming months!!
Jean, my Ki-67 level is 90%! The "T" I will be taking is Taxol, I believe. Lots to think about. I probably will start next Thurs. It has been 2 months since surgery. And we are moving next week. Just around the corner, but still...... Thanks you all again..... Bonnie |
Bonnie,
Best of luck next Thurs. Will keep you in my prayers. Reach out if you need anything. Hugs, Jean |
Bonnie,
Just for the sake of balance, I wanted to give you this link to my first ever post on this Board and the response I received: http://her2support.org/vbulletin/showthread.php?t=25170 There is some question about exactly what information the Oncotype test is providing to Her2+ patients; enough so that the TaliorX trial, which has divided patients into high, medium and low recurrence risk categories based on their Oncotype scores and randomized the medium risk group to receive chemo/endocrine therapy or just endocrine therapy has specifically excluded Her2+ patients from participating. Of particular distress to me is the fact that the Oncotype test was validated retrospectively among a group of patients that took Tamoxifen only. In point of fact, the report says on its face, "Test results should be interpreted using the information in the Clinical Experience section below, which applies only to patients consistent with this clinical experience." The Clinical Experience Section reads, "The following results are from a clinical validation stydy with prospectively-defined endpoints involving 668 patients. The patients enrolled in the study were female, stage I or II, node negative, ER positive and treated with Tamoxifen." It has been demonstrated that Tamoxifen treatment can not only NOT cause cancer arrest in some Her2+ patients, but, in a select group, can promote it. No one is addressing this issue, but I think it accounts for some of the stratospheric Oncotype scores that come back. My own score was 44, with a 10 year 30% recurrence risk according to the test. I was dx post-menopause, 1.3 cm IDC (9mm invasive, with DCIS) ER+ (80%) PR+ (50%) Her2+++ by IHC, Ki-67 11%. The pathology and the Oncotype score seemed discordant to me. Additonally, from my research I learned that ER+, post menopausal women derived the least benefit from chemotherapy of any class of bc patients. I had lumpectomy, radiation, and declined chemotherapy, having found an oncologist who would treat me with Herceptin without chemo. My treatment plan is 1 year of 3 weekly Herceptin and 5 years of an AI. You and you alone can decide what is best for you; you are the one who will live with the decision. I just wanted you to know that not all of us go down the same path. Hopeful |
Bonnie -- I agree with everything the early stage ladies are saying. I was diagnosed in Nov. 2005, Stage T1b. I started reading up on Her2 and was already leaning toward chemo because I didn't want to take any chances. My Oncotype score came back 32, and I threw everything I could at the *)@_$(#+@ disease. The good news for you is that in two short years there is now an alternative to the dread adiamycin/cytoxan combo that many of us had. I understand that TCH is more tolerable and easier on the heart. Treatment is no walk in the park, but you will get through it. If you take chemo, remember that you will need months to a year before you feel completely reenergized. Don't rush it. Be very good to yourself. YOu'll do just fine.
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Hi Bonnie,
Just to add my 2 cents worth!!! I, too was dx'd as early stage, etc. However due to the agressive nature of Invasive Lobular cancer and Her2 +++, my oncologist suggested herceptin. At the time, herceptin had not yet been approved for early stage, without chemo first. So I had the oncotype test done. Since have found that most of us Her2+ gals have a high oncotype result...but no matter...it just proved to me that Her2 is a HIGH RISK!!! My oncologist strongly recommended the chemo...but said that she would also do herceptin without chemo. She prescribed it "off lable" (meaning it was not yet approved for the purpose I was getting it). After much research and 'inner-debate' I opted for the chemo. I wanted to leave no stone unturned! Didn't want to look back and say, "gee...I wish I had done..." Good luck with your decision! |
Tch
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).... |
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.... |
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:p</O:p |
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? |
Time between surgery and initiation of therapy
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:p</O:p |
one more
http://findarticles.com/p/articles/mi_m0PWK/is_2006_May_10/ai_n17214894
<O:p</O:p "Adjuvant therapy usually begins between two and 12 weeks after surgery. It includes chemotherapy and/or hormone therapy, as well as radiation therapy."<O:p</O:p |
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 |
I see from your profile you are from Palm Springs PLEASE PLEASE
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 |
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.... |
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) |
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.
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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 |
Second Try
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Got it Lani. thanks!
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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 |
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 |
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 |
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..... |
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. |
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! |
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