Stage II w/Lymph Node Involvement
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Etherize.. Many MOs don't give the oncotype test to node positive women because they believe positive nodes need chemo... so that can be one reason they are resistant on that.
You are for sure between a rock and hard place. Has any doctor told you that you can continue HIV meds AND have chemo? Many drugs interact with the chemo and make it less effective... other drugs may be too harsh on the liver as the chemo is. If neither of those are the reason, I would inquire about continuing your meds and doing the chemo... I think the extracapsular extension would be good reason to have chemo, not to mention the 2 nodes. I think I would ask WHICH chemo they are considering... some are easier than others (for most women).. AC is harsh and CMF (I think) is much gentler... I had TC (taxotere and cytoxan) and most handle it well, but I know of a woman who had a lot of adverse reaction... Bottom line, if you did saty on teh meds and did the chemo, they could monitor you very close and if there is a problem, they could stop,
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Etherize - Jeesh, with your complicated medical history, I think that you need all the data that you can gather regarding your tumor. It's true that the studies for oncotype and node positive women included a smallesh number of women but it has been validated for post-menapausal women with 1-3 positive nodes. I would push the issue when you meet with MO #2.
Speaking with the radiation oncologist is also very important. Not all radiation for breast cancer is the same. I had radiation to the breast, axillary and supraclavicular nodes and my plan included a posterior beam to better penetrate the area where my level one axiallary nodes had been and the ECE had occurred.
LVI and ECE are not the same. LVI is considered a risk factor for distant spread and would be another reason to seriously consider chemo.
Good luck with your consults and coming up with a plan.
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bdavis and toomuch, thanks for your input. I just got back from meeting the second MO, who I really liked.
He is a senior MO to my regular MO and apparently he's advised her a fair amount on my case already. (I'm going to see if I can switch to him!) He said doing the Oncotype is fine with them if I want it, but it's not as good as MammaPrint, which it's too late for anyway. But the most important thing is that the Oncotype would be most helpful to me if I were 100% sure that I'd do chemo if it came back with a high score. And I'm not sure that a high or low score on that would really be THE deciding factor for me. It's just another variable among many in what essentially has to boil down to a gut feeling.
bdavis, I already knew the chemo regimens that were on the table: T/C and CMF. (The others have heart SEs that would be too dangerous.) Many people do chemo and HIV meds, but my situation is more problematic.
I am on the one HIV med that has major interactions with chemo drugs (Cytoxan to some extent and Taxotere to a much greater extent). A lot of HIV+ cancer patients can switch HIV meds during chemo, but the virus I have is resistant to almost all HIV meds. So I'm stuck with the one that has big chemo-drug interactions. Even going with a lower dose of chemo, there would be lots of risk with my HIV med and T/C, the most effective (but shorter) regimen of the two. I could stay on HIV meds while doing CMF, but that's a 5-6 month stretch that's overall less effective (even if less toxic).
Oh by the way, I only have 1 positive node, not two.
Thank heavens for small favors!This MO said the ECE is another factor but it's lower on the scale in a way. The main issues are the size of the original tumor and the one positive node. Even the one positive node, he said, isn't "that bad" in itself, but when you take it with the grade ... so in order of importance, it's size, node, grade, ECE, etc.
toomuch, thanks for the explanation about LVI and ECE. Just looked on my path report and I apparently have both. Wish I'd asked him about that, but ... I can always do that later. He did say I was at "intermediate risk" of recurrence.
I like the way he described chemo: it's like insurance. Everybody pays for it, most people don't need it, but for those who do, it's a lifesaver.
(Sorry this is so long, everybody!)
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I insisted on a PET scan (I had to know). I was told insurance would not cover it because standard of care does not call for knowing your "true stage". I insisted and insurance did pay but I was willing to pay out of pocket.It was negative thank goodness and I was a true stage 2.
I know several people participating in the phase 3 study for oncotype score and chemo verses no chemo. They are enrolling 40000 woman. So if your new to this site there is a study for node positive woman. I opted out of chemo with an oncotype score of 5. I had a 3% chance chemo would work on me. The risk of long term chemo health risks did not outweigh any benefits for me. I will say it again, we are all different will different genes and cell makeup and we all need to research, get opinions, obtain the latest and greatest info and use it to make our treatment decisions!
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I'm stage IIB w/lymph node involvement. The cancer was 2.4 cm with one lymph node involvement. Diagnosed back in March 2009. Had chemo and radiation. Now worried about CA-27-29 tumor marker. Five months ago it was 31.3 and the LDH was 190. Had new blood work done today. Anyone had any experience with those tumor markers for recurrence? Thanks.
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Eliza... did you have MX or lumpectomy?
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I had a lumpectomy.
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What does your MO say? I assume the MO draws your blood. I am kind of new to tumor markers, so I can't comment on what the numbers indicate, but I'm sure the MO has some thoughts on this.. maybe another reader will chime in.
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Bdavis, Thanks for replying. I see that your cancer was a little less than 2cm and mine was a little more, and you also had one lymph node, and a lympectomy almost a year later than me. Does your oncologist do those tumor markers? I never even noticed those before in the lab work. While I was under care and seeing radiologist and oncologist regularly, I just followed their orders and felt comfortable with their confidence that I was fine. Now I'm just feeling a little nervous and started checking the lab reports and noticed the two tumor markers on the high end of the normal range. I think mine is probably fine; I'm just over worrying probably since it's time to go back find out next week whether those levels went up or not.
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Sorry, what's MO? Oncologist? I haven't been on these forums much and don't talk to anyone about it.
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Eliza - I am not familiar with the CA 27-29 marker as my MO does not do markers because he does not feel that they are reliable in early BC and they can end up causing unnecessary anxiety! I can tell you LDH is not a marker specifically for BC. It is a very non-specific marker that increases when there is rapid cell turn over, especially in blood cells. It can be elevated with malignancy, inflammation and infection. I believe that 190 is still within the normal range at most labs, but ranges are lab specific. I hope that these eases your mind...if only a little!
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MO= medical oncologist
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And my MO draws blood for some marker, but not sure what its called.. He tells me as long as it doesn't change all is good.. thats all I know.
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Thanks Betsy and "toomuch," I'll see my MO in two weeks and find out if the markers have increased and what that means. He didn't mention these in other visits (I assume because they were within normal limits) and I never asked because I just noticed the markers on the lab sheet. When I looked them up, my levels were right up near the top of normal. So I started wondering... But I'll just wait and see. Thanks a lot!
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Hi! There I am new here and I am scare. I am a moher of 3 boys. I believe in God too. But I am worry about the time I have medical and it is taking so long. I haven't even have any surgery . I am sorry about my English, I speak Spanish.
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ADY... so sorry for your new diagnosis... the waiting is the hardest part. How many nodes do you have that are positive? Your tumor is small... so what have they told you for surgery and chemo?
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Adysantaclara, although we don't have Spanish-language forums yet, you will find information at the main Breastcancer.org site now in Spanish. Of course the community here is always ready to give you support too!
Judith and the Mods
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Hi Adysantaclara, I am sorry that you have to be here, but we are a very compassionate group of people and we are always happy to listen. Sending hugs to you.
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Hola Adysantaclara.
Yo si hablo Español- no se si pueda contestar tus preguntas pero juntas logramos a encontrar lo que buscas. Estas mujeres han sido tan adoradas durante mi tratamiento! llegasteis a un buen lugar.
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Just wanted to let all of you know that I had my BMX 11/9 and the pathology came back NED! The 6 rounds of chemo did its job!! Now I just have 33 Rad treatments and the 7 more months of herceptin to do!
I hope that is encouraging.
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Congrats on the good news D2D! NED WOOO HOOO! I am on 22 of 33 rads and although I'm not having fun the time does fly by. the next thing you will know the whole thing will be behind you. I am so glad that you are working on 'insurance' at this point. It gives you more piece of mind.
L
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I was diagnosed 10/22 with left BC, Bilateral mastectomey 11/16 with 3 nodes removed and cleared, now I need another surgery to remove more nodes schedued for 12/1. I went from being stage 1 and no node involvement and no chemo, to stage 2 with 1 positive 1 with cells on it(not sure what that means) 1 clear node, and 4 treatments of chemo. Everyday it seems I am getting more & more bad news and I am having a difficult time dealing with all of this. Thank you for doing this thread, reading your stories has helped me.
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babireland, I am sorry for your bad news. My BS thought my nodes would be negative, but the pathology report came back with one positive node. I, too, needed another surgery for more node removal. I had for rounds of TC and it was not nearly as bad as I feared. I hope you will have the same experience. Stage II is more frightening than stage I, but it is still early. Please continue to let us know how you are doing. Sending hugs to you.
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babireland~ that same thing happened to me. After the bilat they said everything looked good ..no chemo. but the final path report said mico mets to two nodes. (so I know what you are feeling like) Did chemo and 2 years later all is going well.....had an ooph and everything, Now I have some bleeding going on but I am having that checked out today....wish me luck
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Same for me... lumpectomy and clean nodes... then path report said one node had a micromet, so 6 tx of chemo.. I have made it through all treatment now... and start tamoxifen next month.
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? Question:
For all of the women who have positive lymph nodes - I am assuming you've all opted for radiation and/or radiation and chemotherapy for your IDC, yes?
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no.. i had a mx instead of radiation
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Less than 4 positive nodes and radiation is not necessary if you have a MX
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I went with RADs following my BMX. Declined the ALND because of recent convincing studies. Convincing for me anyway. I declined chemo also because of grade 1 & low oncotype. I'm reading the book "Your Medical Mind". Not to far into it but it's about why some of us proceed cautiously & others more aggressively.
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And I had chemo... And my one positive node was a micromet... I figured if the cancer travelled to my node, it could have gone anywhere... one doctor even suggested that cancer can skip around, so something further down the line could be more than a micromet, although unlikely... so I blasted with chemo, had a BMX but no rads.. I had asked for more nodes to be removed, and they declined ME... saying it was not necessary due to recent studies... I sure hope these guys and gals know what they're talking about.
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