A place to greet and meet newbies to stage III
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Dear minustwo. My mom had neoadjuvant chemo, mastectomy, and now is undergoing adjuvant chemo. Yesterday was the 11cycles.. Still have two more cycles to finish. After 4cyles of neoadjuvant, 7.6cm primary tumor shrinked to around 1.5cm. And the enlarged lymph node totally disappeared. Thats why doctor cant tell exactly which stage my mom is. Do you think the redness on the skin is because the tumor was so huge? Because when the tumor was small, she said it was not red. After it became very large, the skin became red. It really scares me.
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Art - I also had neoadjuvent chemo that didn't totally shrink the tumor to nothing (pCR) like your Mom, surgery, more chemo & now radiation & Herceptin for a year. I was told that the BS got all the tumor during surgery and all the treatment after that is to make sure there were no more micro mets. I wouldn't think your Mom still has any tumor after surgery. But we're all different. How long ago was surgery? I'm guessing she hasn't had any scans yet since my MO waits 6 month after final chemo. If there is a new red patch, I would call the BS or the MO and get an appointment. Maybe an ULS would set your mind at rest? Try not to worry until you get feedback from the docs.
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It is hard to tell why it was red. What is really encouraging is how well it has responded to treatment. If the doctor hasn't stated IBC chances are pretty good it wasn't. I was concerned that was what I had due to how it presented. It wasn't, but it is still an aggressive form. It was all removed during my surgeries, and now we are treating aggressively in case any stray cells were floating around.
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At first I would like to thank both of you for your concern. Sometimes people who dont have cancer cant understand how our feeling is. After 4 cycles of neo adjuvant, she had the second petscan to check whether the tumor was small enough to do surgery. After pathology report came out, the doctor said that the results was marvelous, 90% of cancer had been killed by chemo, and the rest was removed by surgery.
But the problem we cant be sure whether it is ibc or not. Because after we had surgery we changed the doctor. And our doctor now said it probably ibc if the skin was red, but cant sure since he never saw the tumor.
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If the doctor feels that it is probable, is he/she also treating as such? I don't know the particulars on treatment protocol for IBC. There is a discussion board specifically for that here on BCO. The people on those threads may be better able to answer some of your questions. IBC is scary, it does sound as if the treatment your mom is getting is effective. I can understand wanting to know more though.
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i am not quite sure too about the treatment. The first doctor we came for consultation, gave my mom 4cycles of neoadjuvant chemo with navelbine, flurororacil, and herceptin. Surgery was done after 4 cycles, and we still continue to get treatment from that doctor till the fifth cycle. However we are not satisfied because this doctor always said dont know if we ask about the treatment, it seems he didnt want the patient to worry about the disease, it is his task to get rid all of the cancer cell without let us know the true condition. So we moved to a new doctor, this doctor explained everything to us, but sadly he never saw my mom tumor since it has been removed. So this doctor only see the medical report we have. He continued with one more cycle of navelbine and flurororacil, so in total my mom had 6cycles of those drug. Then he changed the medicine to taxotere, cyclophospamide, and herceptin for other 6 cycles. He said that navelbine was very gentle, so if the cancer responded well to that, taxotere potentially can be more effective. Anybody here knows about navelbine?
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Hello
I'm Angela and am new to the forum, this will be my second post. Just finished 3 of my 6 chemo treatments (FEC - D) I started to want to learn more about stage three. I assume I have stage 3 "A" but don't know how to find out for sure. Since starting chemo, I have had three different oncologists. The first went on mat. leave and the other was just a temporary replacement. The first two were not very sharing of information. Have other had a similar experience? (Sorry I need to learn the lingo and acronyms of this site).
I had been very sick after my first three FEC chemos and for the next three I will receive a different drug and will require an injection. Scared of the unknown, but spirit is very good.
I had a long delay after my surgery due to an infection and then the wound needed to heal. That added 7 weeks onto the period between surgery and starting chemo, total of 11 weeks. I heard there was a window when chemo should be started and one oncologist told me the window was closing (that was December 31, 2013 at 5 pm). I was devastated and couldn't get any further answers from the onc.
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I started with chemo and then had a MX in Jan. Chemo reduced the tumor by a third but I had a slow growing type and they don't respond as well. I'll start rads as soon as the ROs office calls me back to set up the appointments. I had the initial meeting and the CT scan to set up the zap plan last week. I hate waiting around for calls from a Drs office. Just want to get started so I can get finished. I started Herceptin 2 weeks ago and will do the AIs after rads are done. We're throwing everything we can at it. Hope your mom is handling it OK.
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art i33, and everybody: i cant stress enough to you, how you MUST get copies of everything, every test they run, and clinic notes. what i do, is, i wait about a month, and get everything that happened in the last month. that way, you can come here and look things up, and know which questions to ask your doctor. and i hate it when they refuse to answer questions, one of the problems i am having still, with a few of my doctors. And i know that some say don't google, but i do. and i try to stick to reputable sources, like journals of oncology, pub-med, and wikipedia, and the like. you MUST self- educate, as much as possible, and change docs if you are unhappy. if and when you do, you can request your records and blood tests, and pathology reports, everything be sent to your new doc. i dont get why they dont like to answer a direct question, it is extremely frustrating. but good for you for finding BCO, it is a font of trustworthy info, and women who understand. did you say your mother had radiation? she might be having just a benign inflammatory condition. it would have said ibc on path report, i am pretty sure.
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Pathology report says section from the tumour bed show sheets of foamy macrophages, hyalinization of collagen, fibrosis and necrosis. Focally siderophages and chronic inffllammation are present. Residual foci of invasive ductal carcinoma are present.
Hystology type : ductal, nos with treatment related changes.
Associated dcis : none
Associated lcis : absent
Paget disease : absent
Inflammatory response : 2+
Surgical margins : resection base and other margins are grossly clear
Total numver of node sampled : 14
Number of node positive : 0, but two of lymph nodes show aggregates of foamy macrophages and fibrosis consistent with post treatment changes
Residual invasive ductal xcarcinoma (post neoadjuvant treatment), NOS with focal aprocine change, SBR grade 3.
Does that inflammatory responses mean it is ibc?
Then I wonder in petscan there was a tumor around 3cm on her lymph nodes. Does it mean all 14lymph nodes are positive? But in the report, it says only two lymph nodes that show a change. Any of you with a tumor more than 6cm, experience any change on the surface of skin?
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no, inflammatory responses are not ibc. mine was much smaller than that size, and not close to the skin, so i dont know about that.
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art,
Someone will post with more knowledge than I, but it looks like your Mom has ductal cancer, which is the most common. The fact that her nodes were cancer free is fantastic. I do not what the foamy thing is.
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Yeah, holeinone, i never heard of that either.
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Dear kathec and holeinone, thanks for your responses. Yap, even her diagnosis was so scary, but fortunately the cancer responds well to the treatment. I hope all of us can together beat the beast. With God nothings are impossible.
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Hmm. Do you mean it is very rare that the cancer in lymph nodes totally disappeared after neoadjuvant chemo?
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art, not sure on that. Also grade 3, does not mean stage 3.
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The doctor said it should be stage three late or even early four. Because the tumor was so huge and pet scan showed enlarged lymph nodes which is around 3cm.
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Art - sounds like you're looking at IDC not IBC. As the others said, this is much more common. Where are you located? Different areas have different protocols. Is your doc affiliated with a teaching hospital?
By all means, get your new doc to order all the films, charts, records, etc. from your previous doc. That is your right, but you usually have to be your own advocate. I make sure that I get a CD copy of every single test I have, in addition to a written report. Even if I can't understand the pictures, I have them if another doc wants to look later.
My tumor was much bigger than your Moms and I was not moved to stage 3 until I had a recurrence to my lymph nodes two years later. Stage is based on about 6 different things and very subjective. You can get more info at the BCO thread.
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Minustwo.
We are having treatment in Singapore. I am not sure about the doctor, but I read on internet, he is senior consultant of medical oncology. The first doctor we came is well known as the best doctor in the region, but we cant ask many question to him, because he has so many patients, so the consultation time is very short.
By the way how big was your tumor at that time? Did your skin become red? the doctor here cant say the exact stage for my mom, since the cancer in the lymph nodes disappeared after neoadjuvant chemo, but he said it was late stage.
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anybody here ever heard the issue about vitamin b17?
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No, i will google it, never heard anything about b17. i only take lots of D3 b12 never took b17. lol
Have a great weekend everyone
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i accidentally saw it on youtube. people say it is the cure for cancer. this vitamin is contained in apricot, cassava, apple seed, etc. but the problem is on the other articles they say this b17 is toxic. and can harm human body. so i wonder whether anybody here ever heard about this thing.
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Art133, there is no vitamin cure for cancer. This sounds like stuff I had to deal with right after being diagnosed. People would approach me with all kinds of "cures," claiming that mainstream medical treatments were diabolical plots by big pharma.
Mainstream medical treatments saved my life and gave me back a sense of wholeness.
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That sounds similar to the Layatril (sp) that people go to Mexico for???
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Good memory, 4sewwhat! I remember Laetrile bandied about in the 1950s, 60s. Made from the kernel inside apricot pits, and also known as B17, people would go to Mexico for treatments. Can't remember anyone beating their cancer, though. Here's the Amer Cancer Society writeup on it:
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I did not know this board existed:). I am on another chemo board with Robin! I think we might be the only stage 3 gals over there. Maybe one more but not a lot!
I just finished taxol and moving on next week to 4 FAC treatments. I'll be finished on May 14. December to May chemo plan has been long! As long as it works- who cares!
I tried to read and catch up. Homefour- I think that was the name- you did 12 taxols and then moved on to 4 FAC. How was the FAC?? Super nervous about next week. Taxol was a breeze. I only would get a little tired towards the end of the chemo plan. Then again, the steroids kept me tossing at night along with the hot flashes. Any advice?
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thanks everybody for the information. because i was confused, some says it is good while some says it is not. by the way do you all eat something to prevent the cancer comes back? i know a person, who are more than 5 years of ned, she always drink an apple juice mixed with carrot everyday.
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Art,
I take my tamoxifen faithfully everyday and try to watch better what I eat. I don't think anything can 100% prevent it from coming back. I do take Chaga Mushrooms and some other stuff from the health food store. I have tons of energy and feel good, so I'm sticking with it. Would love to go organic, but I feed a family of 6 so who can afford it. Vitamin D is very important, might want to get the levels checked too. Mind set is really important too! I personally don't think about it day to day. Know that sounds crazy but I am not willing to let it have that much of me. If it comes back I will deal with it then. I did my treatments, had my surgeries and I am taking my pill and getting check-ups. I put it at the curb and it better stay there!
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Welcome Jodi, being stage 3 seems lonely on some of the threads. Happy for you Taxol was not horrific , I thought it was easier than A/C. I did have some bone pain although. I did not have FAC.
4sewwhat, your posts are always so positive, thank- you for that.
Art, most Drs. will tell you to eat a healthy diet, lots of fruits & vegetables.
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Jodi..yes I did 4 FAC and as crazy as it sounds I don't remember a lot of details of it anymore. It was harder than taxol as it made me weaker, more nauseous ( stay faithful to your nausea meds like Emend) and I needed to sleep more. But, it was not as hard as my MO had said it would be. I did do probiotics a few days before the next treatment which I think may have helped with me not get mouth sores. I also did frozen grapes in my mouth when getting treatment. I was fine the day after treatment, but than had 5 days that left me very weak.... than I would start to regain myself again..until the next treatment. I did plan something simple but a fun focus between treatments to look forward to. Drink lots of water and do know that you can do it...you will get to the other side!!
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