A place to greet and meet newbies to stage III
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my onc has run a CBC blood panel on me for past 11 years .... yesterday he took me off arimidex after 10 years ... wow i got graduated !
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my onc has run a CBC blood panel on me for past 11 years .... yesterday he took me off arimidex after 10 years ... wow i got graduated !
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LiveD, my MO told me he would run blood tests for certain markers. He also said he would run a circulating tumor assay every once in a while. He told me he doesn't do a lot of PET scans moving forward, but does like to do one 6 months after treatment ends.
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Live deliciously, they probably mean that they will check your tumor markers. It's a pretty unreliable test - mine were normal when I had cancer and then were high after treatment. Go figure. I asked her not to run them - too much stress finding out they were high and that it was flukey. No thanks.
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jenni_ca. - congrats on 10 years and off arimedex! You give us all hope!
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Jennie ca_, That is so great! Let us know how you feel in a few months, I am curious as to how it feels to stop.
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Regarding recurrence rate, my MO told me 30%. So it either varies a lot depending on the specifics of our situation, or they don't really know.
Lulu, I got that same "no scans" spiel. I don't even get tumor marker tests. My MO said that finding mets on a scan versus when symptoms appear doesn't make a difference as far as how long you survive. Also, the scans cause anxiety, and there are false positives which cause unnecessary biopsies. I understand this, but it still pisses me off. I told him, it might not make me live longer to find out I'm stage IV on a scan versus a few months later when I get symptoms, but I'd want to know anyway. For one thing, I'd quit my stupid job. No need to save for a long retirement which is basically why I'm still working. Besides, as with all statistics, I bet there were some outliers in those studies where finding the mets on a scan did buy them some extra time. I'd like to have the chance to be one of those outliers. He also said that tumor marker tests aren't accurate enough to be of use. I'm kind of with Magdelene and more or less expect it to show up some day. If not breast cancer, some other cancer because this is my 3rd cancer diagnosis. My body seems to like making cancer cells. My second cancer was/is a rare form of lymphoma that's not curable. It's not doing much now, but could rise up and bite me in the butt at any time. So, it might be a race to the finish as to which type of cancer will finally do me in. Sorry to sound so negative. I don't think about it most days, but that "no scans" business really makes me angry especially when I hear that some people do get scans.
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I hear ya 2Tabbies. I was shocked when I was told no scans, wait for symptoms. I don't know my recurrance rate yet, should find out soon though. Being a IIIc, I'm assuming it's going to be a bit on the high side...ugh.
I also had lymphoma 13 years ago. Of course nothing like yours, but it's hard to go from getting CT scans every 6 months/to a year to NOTHING. Especially since this BC, to me anyway, seems so much more sinister.
I don't know. I trust my docs. I'm just having a hard time wrapping my brain around things at the momment.
Julie
P.S. you can be negative and vent all you want to me
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My MO didn't mention my recurrence rate but BS gave me a print out from adjuvent online and it said that I had a 72% survival rate or 28% mortality. I can't remember if it was 5 or 10years. She said that the survival rate might be a bit higher than stated. It didn't include radiation as factors just surgery, chemo (3rd generation) and hormone therapy. When I asked about routine scans both BS and MO that it doesn't matter is mets is discovered early or later as the treatment would either work or not.
Given my age, I am expecting this thing to show up again, especially since I have no idea how long it had been there for. If I think that it might have been there for 2-8 years (with the lymph nodes involvement) it scares me but I try not to think of it. Although I think that a heart attack would be the way I go instead of BC.
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Hey all,
Not sure how to edit my sig line, so I'll just give the story here. It's a bit long, but the brief version is that I had a lump for about a year, didn't have insurance but had gotten an ultrasound which initially showed no cause for concern, then I felt it get bigger so I got a second ultrasound a few months later and they referred me to a surgeon. Surgeon said it was nothing to be concerned about and there wasn't a huge rush to remove it, so I decided to wait until I could get insurance through my husbands work. Then I got the insurance, which ended up totally screwing me over when I was in the middle of trying to get the lump biopsied (explaining just that would take a while). So the whole time all the doctors are telling me "you're too young, it doesn't look suspicious, etc etc" because I was only 26/27 at the time. Well it was breast cancer, and it wasn't caught until it had become locally advanced to the skin and spread to at least one lymph node under my arm, and possibly one in the internal mammary chain (doctors were divisive on this one and it's not in an area that can be biopsied). So it was definitely stage III, just not sure if A, B, or C, as well as Grade 3.
I've already finished chemo (AC + T), which wasn't too bad, and just had my unilateral mastectomy (right side will go next year when I do reconstruction). I'm BRCA2 positive, cancer is ER/PR+ and Her2-. Had a good response from chemo, but not 100% (which my doctor warned me was unlikely with ER/PR+ cancer), and am getting ready to start radiation, though I don't know for how long yet.
I'm finding that as I make my way closer to being done with the active part of treatment, it's harder and harder for me to not want to do something more. I've been trying to get a better idea of my prognosis, because based on my stats (Stage 3, Grade 3, possible internal mammary node involvement, BRCA2 positive) it just feels like it's almost impossible that I won't have it metastasize at some point. That makes me want to be aggressive, and do something additional to the standard protocol (additional chemo, such as cisplatin which has been shown to be very effective against BRCA positive cancers, or try and get on a trial for a PARP inhibitor). I suppose I'm just here trying to get the input of some other people in a similar situation of being stage 3 (especially if you are also Grade 3), and whether you guys also felt like a recurrence/spread was inevitable, or if you felt like you still had a good chance of beating it entirely. Are there any good stats out there on this? My doctors really haven't said much other than that I'm considered high risk for recurrence, but didn't give me any indication of what that means.
Thanks!
Natalie
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Natalie, I really had to go to bat for it, but I'd had a second opinion right after my diagnosis with the head of breast cancer medicine at a big university, and he consulted with my own oncologist to order more chemo toward the end of radiation. My breast cancer had traveled to 4 lymph nodes and the dermal lymphatics of my breast, and I didn't have a complete response to my neoadjuvant chemo either. I did six rounds of xeloda and navelbine. I have no idea if the drugs sought out more sneaky cancer cells and destroyed them, but I sure hope so.
Please feel free to PM me if I can help in any way.
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hi Natalie. Welcome to the forum. So sorry you had that awful experience although nothing about the c experience is fun anyway. I tested negative for the genes so cant speak to that but I know we are all at risk for reoccurrence. Is there a forum out there for the gene positive? They may be able to share some experiences because I know there are other preventive things you can do . I will be praying for you .
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Hi all,
I've been lurking on this thread for some time, but when I saw your post Nathalie, I thought this is exactly what I think. I also think BC will come back someday, hopefully in many years.
I also have had chemo and UMX and will have rads in august and then tamoxifen. My tumor went from more then 5cm to 1,2cm, so although no pcr, chemo worked well. And my onc also told me that having pcr is not very often acheived with er/pr+.
At least since I am er/pr+ 100% I'll have to trust that tamoxifen will do the job.
Noo
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Hey sbelizabeth,
I also had a second opinion right after diagnosis with my uncle's doctor, who is a very well known if a bit controversial doctor (he's kept my uncle alive and in good health with stage 4 pancreatic cancer by bucking the traditional treatments and giving him a chemo regimen more typically given to breast cancer patients. I only decided against making him my primary oncologist because of insurance reasons). He's the one that suggested cisplatin as it's been shown to be very effective against BRCA+ cancers. There is a risk from long term exposure of chemo resistance, but he said for me he would only recommend 1-2 rounds of very low dose, just as a precaution to get any stray cancer cells that might be lingering. I've also been reading about PARP inhibitors for BRCA+ patients, but those are still in the very early stages, and only one is currently FDA approved for advanced stage ovarian cancer.
I'm going to give him a call and see what he says. Did you have a lot of issue getting them to agree? I have no problem doing more chemo, it really wasn't difficult for me, but my oncologist just doesn't think there's any evidence to support it in my case.
Natalie
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Hello Ladies, I just found this board & and thought I'd join in since I'm a stage 3 too - diagnosed in January. I finished neoadjuvent chemo 2 weeks ago (AC-T) and have just started Tamoxifen. My BMX is scheduled for August 17th. I can still feel the node under my arm but it has reduced dramatically as has the primary mass. My oncologist is recommending that I have surgery after radiation to have my ovaries removed to further reduce a chance for recurrence. Has anyone else done this/heard of this? Supposedly this is good for strong estrogen receptor-positive type cancers which I am. Natalie, maybe that might be something else you could look into; however, at your age that might be discouraged. I am 44 and done having children.
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Well I'm pretty sure they'll recommend the oopherectomy (ovary removal) for me as well due to my being BRCA+ since that also makes me more at risk for ovarian cancer. It has a lot of side effects for someone as young as me though, so I'm not sure when they would want me to do it.
I'm not sure if it's allergies or just an extension of my crummy mood, but I've just been feeling kind of off for the last few days. Very low energy, really thirsty but my mouth gets dry quickly no matter how much I drink, which is leading to a bit of dry itchiness in my throat, and my nose feels like it's irritated. Wondering how long I should wait before I mention to my oncologist.
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Well, I think I stay confused - Since Feb, I'm ILC, Stage 3, grade 2, Hormones +, HER -, BMx, going through Chemo now, will be having Rads following. - Started hormone Blockers as soon as I was diagnosed. It's been rough. And with ILC, I don't think anyone has a good handle on what to expect - I question why I'm doing the chemo, soon the rads - I'm sorry I had the Auxillary lymph node surgery, - but, my little tiny tumor turned out to be 5cc with a 2nd small multi (what ever they call it - chemo brain and tired!) - I'm doing all the chemo and stuff because it makes my family happy - but that's it. I'd like to give yall some answers...but I'm still searching myself. I don't understand why such different ILC dxs have such different treatments. In fact, I was shocked to see in this forum an ILC patient with only a 1 cc tumor! I thought all ILC women didn't discover their tumors until the tumor was rather large.When I get through the bulk of my treatment, I hope to do some research on ILC- and maybe some writing. We just don't know enough about ILC. Prayers and Faith ladies!
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December,
My Lobular tumor was just a tad over 1 centimeter. The cancerous nodes were huge, matted & bursting open. Cancer was growing on the outside of the nodes. It's called extranodal extension. I asked the Radiologist, how this was possible. He shook his head, no way to know. Lobular is sneaky & unpredictable.
I would also be upset to have the lymph node surgery, if it was not needed. I had one biospied when my tumor was biopsied. I knew that it was in my nodes before my lumpectomy.
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so holeinone...your lobular tumor was cancer free? Still confused....At BMx on node suggested cancer - but because of that, and because the tumor turned out to be so much bigger than thought - they went ahead and did the Auxillary surgery (all came back clean) - however - my question was always why? The results of the surgery did not change the treatment plan which was Chemo, than Rads - so - what was the point of the surgery - which so far has left me with about 30% less usage in my right arm - not to mention the other risks I wish you well - I wish us both more understanding!
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I am a newbie to Stage 3 even though I was diagnosed 8 months ago. I'm waiting on my pathology report from my recent surgery. I have neuropathy from chemo, insomnia & was very nauseous last night. I'm having a tough time
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hi win lt. Welcome and let us know how we can help.
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O yikes! Does that mean a possible recurrence? I am wishing you well and hoping it's not. The first year after everything is the hardest physically, I think. But I didn't even begin to feel almost normal until just a few weeks ago. Hope you feel better, just rest,and treat yourself well. You will get there. Will you come back and let us know how you are doing?
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Tomboy - did you see that the pilots of the solar powered plane tried to keep awake on their long legs by listening to Leonard Cohen!!
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December, they check the nodes because it does change treatment protocols. My radiation was different than what was initially discussed and my chemo changed to more aggressive treatment. 9/9 positive nodes with extranodal extension and lymph vascular invasion. Initially thought it was caught early, but turned out a bit differently when theydid the ALND. Have you found a certified lymphedema specialist to work with for range of motion issues? The OT I worked with was amazing. Still have lingering nerve and pain issues.
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December, the use of your arm can be regained. Insist on PT, it can seriously do miracles. I am ever thankful that a friend told me to get PT right away. I had a wonderful LE therapist all through chemo, rads and beyond. I saw her regularly for about a year. I am left with only really mild, minor LE that flares up once in a while. I have full range of motion and no pain.
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Win, hang in there. Yes, it's a tough road. take one day at a time. One minute at a time if you have too.
December, I hope you can get the right therapy and regain arm function. The things this disease does to us makes me so angry.
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Momine, 2Tabbies, and several others who helpfully replied,
Thanks so much for your suggestions. I sort of figured that I was going to have to have PT. - Several folks outside of this forum keep telling me to wait 3 months post-op (@ 8 more weeks) and see if I'm not back to normal. It's interesting to hear that perhaps I need to start ASAP - sounds like a good idea as long as I can skip a week during chemo treatments. It's good to hear from some of you that you have dealt with this problem successfully. There is hope for us all. Yes, 2Tabbies, this diesease makes us all angry! I guess one of the things that seems wierd to me is that with ILC, no cancer famiy history, and no "lump" - I walk into the doctor visit very healthy and walk out very sick - and I never felt "sick" until the treatments started. Guess what I"m trying to say is - normally a person has a tummy bug, or an infected, angry place on their body somewhere, or some kind of pain and go to their doctor to get well. I went to the doctor thinking over all I was well with no real concerns - and come out sick. With ILC, I just had a thickening in part of my breast (thought it was a minor breast infection of some kind) so I can't help to wonder did I really have cancer? I know it's crazy - but all of this seems to be a very bad dream. Thanks to all and many blessings!
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December, the sooner the better on the PT. I have told my onc that I think ALL his patients should be sent for obligatory PT sessions as soon after surgery as practical. Not only can being proactive head off a lot of problems down the line, but I also found it helpful mentally. PT was the one medical appointment that was pleasant, relaxing and all about me in a positive way. I always left feeling better than I did when I walked in, which is more than you can say for chemo and rads. So it saved my arm, but also helped save my sanity.
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I agree wholeheartedly with Momine. No one told me that shoulder pain and stiffness is a common problem as a result of mastectomy and/or rads, and I for a while, my shoulder was "frozen." It took months of PT to mobilize it again. I still suffer some range of motion issues. Some proactive PT to prevent problems would have been better.
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I'm concerned. My newest complication is strange feelings in both arms & hands. It started 2 days ago & is now occurring more often. Must have something to do with my surgery & nerve involvement. Combined with the recent onset of hot flashes & sweating & Im pretty uncomfortable. Anyone have the arm challenges even in unaffected side ?
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