Calling all TNs
Comments
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I don't post on this board often, but I do read the posts.
Congrats Allydp, so happy for you!
Placid, my MO did say if my cancer came back I would not get more surgery & would be in palliative care and no follow-up scans required as they don't improve outcome. I also think the earlier it's caught the better, so I'm looking for a second opinion from someone who cares a little more about their patients. I have 3 small children that I want to see grow up so I'm going to be proactive even if I have to pay for the extra scans.
Thanks for talking about metformin. I have low to no estrogen receptors and my mo wants me to take tamoxifen. Well tamoxifen is known to cause uterine cancer which runs in my family, so I'm not so sure about that! Looking for alternatives including an androgen blocker.
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Hi Dizzy,
If you are not comfortable asking your doc to clarify her statement, you could always post your question on the Johns Hopkins 'Ask an Expert' breast cancer website:
http://www.hopkinsbreastcenter.org/services/ask_expert/ Hope you get some clarification.
Carol
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Canuck Mom, It sounds like your MO was taking about mets - not just cancer in the breast recurring if she was speaking about palliative care and no further surgery.
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Mags/Dizzy
I have had a pain on my BC side, which I had radiation on, if I twist slightly to talk to one of the other typists at work. The pain is in my ribs and is terrible when it comes but it only lasts for about 30 seconds then goes. I only seem to get it when I do that little twist. Also I get it sometimes if I am a passenger in a car and I turn to the left to put my seat belt on. I also have lymphoedema on that side and still have some swelling. It is really an awful pain when I get it but its been going on for so many many months that I figure its nothing to worry about just the whole BC thingy.
With regards to the mets my breast surgeon has said the same thing to me. 'Finding it sooner won't make any difference to the outcome'. That seems a bit double dutch to me when they are always saying early intervention is far better for your outcome.
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The doctors may say: 'Finding it sooner won't make any difference to the outcome' meaning that the ultimate outcome will still happen - eventually! But, it seems to me, that discovering it sooner could definitely mean a better quality of life during that time. Personally, I would want my doctor to want to find it sooner rather than later and try to do their best to manage it. Hopefully, none of us will have to deal with this at all.
Doreen
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Carol, thank-you for the link. I might do that. I will get my onc to explain that to me but it's been kinda grinding at my brain since I left all happy that the first Ultrasound was clear and I don't go back for another month. I think I'm starting to understand it. Basically they use their best "stuff" first, if that doesn't work (mets) they start on the next best "stuff", when that stops working, the next best "stuff" until there is no "stuff" left. If the mets aren't really troublesome, why put yourself through the treatment and waste the second best stuff? If you wait until you need treatment for quality of life, it works on everything that is troublesome and you get more milage out of the treatment. That's currently how I'm understanding it. It actually make sense.
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Dizzy that's a very good theory and it does make sense.
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I am taking Metformin and have been on 850 mg x2 a day. Will continue indefinitely unless I get any bad fluctuations in my every 3 month blood work, especially the liver. My Gyn whose wife has had very early BC prescribed it.
I am taking turmeric because there is curcumin in it. I came across it so many times in my research on preventing recurrence. I take it 1x a day. I take 450 mg. be sure that the brand you buy is good and contains over 90 per cent curcumin in it.
BTW, I've just read a great book on preventing cancer and/or recurrence. It's written by a Naturopathic Doctor who has had breast cancer and another health care specialist who has had ovarian cancer. It is titled Five to Thrive. It's really down to earth, cites research to support recommendations and focuses on these 5: Immune system, Inflammation, Hormones, Insulin Resistan, and Digestion. There are chapters on food, exercise, supplements, joy/love/laughter, excellent description of the cancer process as well. I highly recommend it. Going to read it through a second time this week.
Hugs,
Peggy
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Congrats Ally!! Yippeeee..you are cancer free!!
Good to hear Mags that u completed 3 years and out of danger and LRM..you are 5 years out, that means even you are cancer free, i guess
talking about Metformin, it wasnt recommended to me. He said he had done a study on a good number of women and didnt find much difference in post chemo setting but Metformin does help during chemo..the same chemo works better, if taken with Metformin, but again there are other risks associated and he uses Metformin with chemo only in metastatic settings.
canuck- even i have very low estrogen as confirmed by one pathology lab but rest two said pure tnbc. my onco said tamox does have a chance of causing uterine cancer ..so in my case the risk outweighs the benefits.
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Ally, congratulations on you pCR! That is awesome news. I'm hoping your recovery from surgery is non-eventful and things go smoothly for you here on out.
Mags, wishing you the best on your surgery.
Peggy, that sounds like a really interesting book. I also take tumeric for the same reasons.
All this talk about side pain is interesting to me because I've just developed it in the past week or so. My rads ended in mid-May. I finally bought some new bras that fit my new size and started wearing bras again about 3 weeks ago. The pain is where my bras have a seam around the cup. I'm thinking my pain is from a combination of the rads and getting used to wearing bras again. My bras aren't tight, but I think there is just enough pressure there to cause discomfort over time. It's also right at the area where I have fat necrosis. I'm thinking I'll go back to being braless or where cami's whenever feasible. It's harder in the summertime when I wear a lot of knit tops. In the fall and winter, it's much easier to get away without a bra.
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Ally, Congrats I also had PCR with my MX. I didn't see your post since I just had recon hip flap surgery on Weds. I'm hoping that by having PCR is the best case scenario with regards to recurrence. I will have to ask my MO about starting Metformin. I also take Turmeric 450mg/day. We all need to pool our thoughts and hints about helping to prevent recurrence of TN.
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Allydp - congratulations on the good news!
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Yay!! Simplelife4!!! I'm so happy for you!
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I'm so worried as my cancer at diagnosis was 5.5cm - clinical measurement and 3.5 on imaging. After 8 rounds of dose dense chemo -ACT, imaging is showing my mass at about 2cm, however, when my surgeon measured clinically, she is unable to feel anything in terms of a hard mass or lump. She said she is unsure if it's dead tissue or how much of it is remaining cancer. We won't know until surgery. She is recommending a lumpectomy and sentinel node removal. She does not believe any lymphnodes are affected. Does anyone know what this means?
I'm waiting for a surgery date and was really hoping for a PCR.
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Just my personal 2 cents...with the triple negative diagnosis, I would go for the genetic testing to see if you are BRCA positive. 80 percent of BRCA cases are triple negative (the converse is not true so do not freak out). If you are BRCA positive, I'd skip the lumpectomy and go for a bmx. If it were me, I'd go for the bmx anyway, but I'm pretty radical when it comes to those kinds of choices.
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Sally, I agree about needing to know your BRCA status. It's important with TNBC. The whole LX/MX/BMX decision is a very personal one. Each option has it's own set of upsides and downsides. It's a tough decision unless you feel very strongly one way or the other about it. My plan was to do a BMX if I was BRCA + and an LX if I was not. I turned out to be BRCA -. Whatever your BRCA status, I'm wishing you a pCR!
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I did have genetic testing done and my BRCA 1 & 2 came back negative.
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I did have genetic testing done and my BRCA 1 & 2 came back negative.
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hi simplelife4! Thank you for wishing me a PCR:). I did have genetic testing done and turned out not to be BRCA 1 or 2. My lymphnodes are also not affected according to MRI, Ultrasound and mammogram. Imaging. So I gather you had a misectomy?
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Sally, I had a lumpectomy. You can see my history in the lines below my entry.
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Sally,
Since you're not BRCA positive, it seems the choice is yours!
Before I knew my BRCA status, I was leaning toward a double mastectomy just to have everything over and done and minimize the risk of recurrence (though studies show it doesn't matter) it just felt like it did.
I now realize: 1) Lumpectomy and chemo take less time than mastectomy, chemo, reconstruction (I'm looking at way over a year by the time I'm done) 2)With a lumpectomy I would've needed radiation but with the mastectomy I didn't. 3) I lost just about all the feeling in my breasts and no longer have nipples with a mastectomy.
These are some things you can discuss with your doctor and way how important each issue is to you as an individual.
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I really agree with Radical that it's a very personal decision. She pointed out some of the down sides of a BMX, I thought I would point out some of the down sides of a LX. With an LX you must have radiation. (In my case, I would have needed it with a BMX or MX since I had lymph node involvement.) Radiation is not bad with an LX, but if I ever need a MX in the future, reconstruction will be more complicated because of the past radiation. It sounds like you wouldn't need radiation with a MX, sometimes people do....and sometimes they don't. It's something to take into consideration. Also, with an LX, you can sometimes lose feeling in the nipple. It depends on where the tumor was. It's also something to talk to you surgeon about. Some people know right off the bat what kind of surgery they feel most comfortable with. Others don't. At the end of the day, in most cases, the decision is truly yours to make. I don't want to sway you either way, but I do think the more you know about the details of each type of choice, the more likely you are to be comfortable with the choice you make in the end.
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Just catching up as I've been away for a while.
MonikaV: So nice to hear from you. Glad you're still doing well. I'm still kicking around these boards from time to time... coming up to year 5 very shortly!
Nettie: My affected breast is still tender when massaged/examined. My onc said it's a pretty normal result of scar tissue and may last forever.
Re metformin: does anyone have a link on the study and its preliminary results? Is it being given alongside chemo or post-treatment? My onc wouldn't prescribe as it's considered off-label for now, and I never pressed my GP for it. I wonder if it's metformin that's the beneficial agent or simply having good glucose processing/control which non-diabetics would have anyways without the drug...? I know the study was initiated when they discovered that diabetics (on metformin) responded better to chemo than non-diabetics.
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These are the articles that were sent to me by inspiredbydolce. She hasn't been seen on these boards in a while. she had done alot of research on tnbc and I asked her to share her information with me. I think these have been shared on here before
http://strittermed.org/breast_equity/?p=44 This is an authors recap of the impact Metformin had a 2010 San Antonio Breast Cancer Symposium
http://www.lef.org/magazine/mag2012/feb2012_Can-Diabetes-Drug-Prevent-Cancer-Death_01.htm This is detailed information about how Metformin works and information about AMPK signaling.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3282095/ "Metformin: Mulit-faceted Protection Against Cancer" - This is the more technical medical journal type link
http://meetinglibrary.asco.org/print/570748 the trial dose, it’s listed here in this 2 page reference sheet – take this with you so they know what is in trial.
Anyone else have any more research?
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Sally,
The sentinel nodes are a few of the nodes most near to the tumor. This is standard procedure to find out if there is lymph node involvement. I hardly noticed they were gone.
Hugs,
Peggy
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Alicia CONGRATS!!!
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I did my reconstruction surgery last week and path on my right breast was negative. I really didn't think about the possibility of cancer in my other breast but the good news is there isn't any. Now I just have to follow up as needed.
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Gram of 2boys,
Congratulations on your pathology report! What a relief we all feel when we or others get good news!
Hugs,
Peggy
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Can any of you tell me if after treatment you had random pain? I mean I feel like a crazy woman, one day I have pain in my head (not a headache), next will be pain in my hip, then maybe my leg, then maybe my arm! Due to scoliosis and rads damage, I have back pain everyday! It's not always there, but certain movements make it hurt everyday!
I would just like to know that I'm not crazy! All my doctors seem to dismiss it as it is not affecting my daily activities, I mean, yes when I hurt, I slow down, but none of the pain is so bad that it puts me out of commission! Just aggravating pain that keeps me worried about mets! And yes I've asked for scans, but so far, all concur that none is needed!
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Posting a link
this link mentions a blood test which will determine if anybody has a higher risk of cancer or its progression. this is for women who are BRCA negative yet they develop cancer at a young age. It mentions some epigenetic signature in the blood which is found in BRCA 1positive women and now has also been found in women whose BRCA is negative and who go on to develop breast cancer.
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