What is our prognosis, anyway?
Comments
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Yeah, Momine, that's reminds me. When I first saw my new onc, at about the 1.5 year mark out of my mx (about 9 months after end of rads) he told me, "You almost certainly do have residual disease and you're lucky you have not recurred yet."
So yeah, I agree although he says the risk doesn't go down, the first two-three years are important. Actually the first five years or so because I think so many patients do not get routine scans or tumor markers that they have mets that are growing but are not CAUGHT until the four or five or six year mark because the patient is asymptomatic. That is my theory.
As for the late recurrences, it's mostly ER+ that recurs later and from what I understand it is that the residual advanced disease goes dormant for years, or just takes a really long time to "take root" and start growing. I think it's actually a pretty complicated process for a cancer cell to stick itself somewhere and developed the vascular network it needs to grow.
My onc said I'll probably be on AIs forever. He said he's seen too many people develop distant mets two or three or four years after stopping the AIs and/or Tamoxifen. He doesn't believe five years is nearly enough. -
Tectonic, my LE therapist told me the same thing about the AIs. That was before the study was out about extending the use past 5 years. She told e to stay on them longer, because she had several patients who had recurred shortly after stopping them. -
I'm another one who is still taking an AI. I am 9.5 years out and just saw my onc last month. He and I are in agreement that staying on the AI indefinitely is the way to go for me. I have minimal side effects and my bones are holding up well, so it's a no brainer for me. My onc has also stated he has seen patients who recur shortly after stopping the AIs or tamoxifen, usually within 2-3 years after. -
Thanks NoMoreMeh, it is so reassuring when we get to hear from someone such as yourself, almost at the 10 year mark & NED.. My SIL is exactly where you are, she had more nodes involved & her+. I will start Al's the end of Feb., after rads..I am willing to stay on whatever it takes..easy to say now, not knowing how the SE will be, but I'm pretty tough.
Does anyone that is on arimidex have advice on the real thing vs generic? -
oaktownmom.....Thanks so much for starting this topic.... -
Holeinone - I would say to definitely travel and enjoy, but DON'T spend down all your retirement. You're sure to need it for many years to come!
On the DCIS/IDC tumor size front - I was curious after this discussion so went back and looked at my pathology report last night. I was classified at T3. Report said that I had an area of DCIS that spanned 5.7 cm, with multiple contiguous areas of IDC within, therefore invasive tumor size = 5.7 cm. Still doesn't make sense to me, so I will just choose to believe that my circumstances are perhaps a bit better than that particular number would imply.
Thanks everyone who has weighed so far - lots to consider. Though I expected it, and was seeking it out with this thread, it is still surprising how vastly different the information is that we have been given by different providers. My providers tend to be much more on the optimistic side, and I guess I land in a place of understanding that there is risk (significant even) of recurrence, but that it is the least likely outcome (or, even with a 50% stat which I hadn't really heard before this thread, that my chance of it not coming back is just as good as the alternative). That is certainly my doctors' take. I fear but don't expect that it will come back.
I will stay on the AI's as long as they let me, get off my butt and exercise as much as I can, and try to live a healthy and happy life. Oceana - you are right that at now age of 41, 10-15 years is NOT enough time for me. I want to see my three small children grow up, and that's what I'm focusing my energy on! -
Yeah, that is what i have allways thought, too. that maybe my cancer was already stage four, but just not clinically detected. i feel pretty good, now, tho. pains and aches and fatigue, still- but better than during TX's! i am 54, now, would like at least 10 years to finish up some projects i put off for stupid jobs and other crazy reasons. i want to concentrate on my art and jewelrymaking, and poetry chapbook etc. things like that. i did go a little wonky, and bought myself some stuff!,after dx, and during tx, when i thought i wouldnt last a year. dont regret it a bit! -
Honestly, after passing the two year mark, I was feeling much more hopeful until I read this thread and heard what your providers have told some of you. But I have learned a couple of things too
I mean I always knew that I am pretty high risk to move to stage IV, but I don't think about it nearly as much and have begun believing that I will see my kids graduate from high school. I think about the future a little more. I feel like I have done just about all I could, chemo, rads, double mast, arimidex( still on) , metformin and zometa as prevents. I had a scan last year, clean - and my tumor markers are 10 and 12 last two times, so I sometimes think that I might just make it to the time when they have a magic bullet.
The caris report interests me as does afinitor trial with femara. I am too far out of rads for that one, but keeping my eye on that one to possibly beg my onc for it later on ...
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If I could add..... I was shocked at my stage IIIC dx with 12 pos nodes, and so so may bad prognosticators, including No clear margins after my last surgery and her 2 Positive BC, blah.. blah, blah. I was floored as I am a nurse and have dealt with BC my whole life, in practice and in my family... Anyway, that was 8.5 year ago! and I am well. It's normal to fear recurrence, in the early days but it gets better with time.
God Bless you all! -
Luckypenny - how did you get the metformin and zometa?
IKC - so nice to hear from you and how great you are doing! Hopefully we will all be there some day. -
Thanks warrior... BTW I am on zometa and metformin too! -
NoMoreMeh...congrats on almost 10 years!!! I also see you are grade 1. Due to grade 1 have been told by MD Anderson and my home town MO that I will need to be on an Als or some form of treatment for at least 10 years or more...I already decided that was what I wanted...say grade 1 needs longer treatment.
I see some of you either have or are doing Zometa...I have been fighting for this treatment for a year and a half. I have researched and believe that this would be of benefit for me and assume those who have done it believe this also. MD Anderson doesn't do Zometa for stage111. My hometown MO says No as he just did my bone density and my bones are just a good as before I stated Als almost 2 years ago.... I'm willing to pay out of pocket, but he won't do it since my bones are great. I have a functional MD who prescribes my Metformin and agrees I should do Zometa. So thinking I need to find a MO who will allow me to pay for treatment I guess...hate to start over with someone new. Tectionshift thinking about traveling to see your MO as he seems more progressive and proactive...do you know if he is supportive of Zometa treatments for stage III?? Sorry, don't want to treat you like the Dear Abby of BC, but you are so on top of your own care I'd like your opinion on seeking Zometa treatments! -
I am doing Zometa too - my onc feels that the evidence isn't a slam dunk, but that there's enough potential to make it worthwhile. I believe she is only going to approve for 3 years though - and I've done 2 years so far. I think that's what the clinical trials have done. How long are others going to do it - indefinitely? I'd like to do it longer. I am doing the Metformin trial, so don't know if I'm on placebo or the real deal. I tried to get my doc to just prescribe the Metformin, but she wouldn't, so I joined the trial. -
what is metformin -
Metformin or Glucophage is a drug commonly used in diabetes to control blood sugar. Over the years, it was noticed that women who were taking the drug seemed to do better after breast cancer, so now they are studying it. I think the idea is that controlling sugar and insulin is beneficial to preventing cancer growth.
I too have been turned down for Zometa. I hope to be able to travel somewhere to get it. -
thank you mary625! -
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warrior
My onc prescribes both Metformin and zometa I get zometa every 6 months and have one more year left if he uses the 3 years every six months dosing. I had to push a little to get these but he is pretty open minded and monitors closely. I have heard that the nci centers wouldn't prescribe these off trial for good reasons I am sure. I sure hope they are helping. -
I had Zometa every 6 months for 3 years. I'm taking a break from the hormonals this year. Just had to get off it for SE's.
Oceana
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I was wondering for the ladies taking zometa, are you taking it due to osteoporosis from an AI or are you taking it as a preventative against recurrence?
After a year on aromasin I went from strong bones to osteopenia in my left hip and some of my lower vertebrae. The doctor suggested zometa or switching to tamoxifin. She also asked about my calcium which I didn't know until then that you can only absorb 500 mg at a time. I was taking 1500 mg at once so I asked if I could try changing my calcium intake and exercise and see how I did.
Have you had any side effects from the zometa?
This is a great discussion. Thanks to all who have contributed here!
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Hello girls,
Are you all counting the 2 years from initial dx or from the point of tumour removal? I was told that the clock starts actually at surgery. This makes a big difference in terms of the 2 year time frame to me. As I was dx Feb 2012 and had op August 12.
it's all very confusing. I agree that mets might be there, but as yet undiscovered for us stage iii' ers.
My surgeon wrote that I was at 'future risk of chest wall recurrence' - I read this as she is expecting it to return.... -
My onc has given me statistics at every appt....X stat for doing bilat, "y" for chemo etc....For me its 100%...either I stay NED forever of it recurs....I don't live in fear, but it is in the back of my mind....especially when I hear of someone with new mets.....But I know that I have done everyone I can to treat and beat the beast...I try to live life to the fullest!!! if G-d forbid, NED goes away, I will deal with it then...otherwise, cancer is past tense!!!! -
Is there anyone on metformin or Zometa who sees an MO in Texas? And at what point did you start taking them? Since I go to MD Anderson it sounds like I won't be able to get them there but just wondering if after I finish rads next year I could find an MO in Texas somewhere that would consider further treatment. -
thx for all the info & discussion on Zometa & Metformin...I have seen those treatments on this website for stage 4, but had no idea it could be used proactively.
So for those of you that are receiving both or one of these meds, did your Oncologist suggest it or did you push for it.? When do you start looking into trials...I just finished chemo, rads will start after Xmas. -
My oncologist suggested that I enter the trial/study for Metformin that was going on where I was treated. I decided I didn't want the chance of getting the placebo for 5 years and then finding out the study was great. I asked my internist, and he said that he had wanted to give me that medicine anyway since I have had metabolic syndrome for awhile (combo of high bp, overweight, etc.).
I cannot get Zometa where I am being treated locally. The MO feels the risks (something about the jaw deteriorating) outweigh the benefits.
TectonicShift can let you know if Dr. Dicke at Arlington Cancer Center would be helpful in this regard. I'm pretty sure he gives Zometa. I'm not sure about Metformin.
Also since I finished treatment and got on the Metformin, my MO said "should you internist see fit to treat you with a statin" that would be a good thing. So I started on a statin in July. There has been a lot of publicity about the statins and bc over the last week or two. -
Fonda's and others who asked about Metformin and zometa
1. I had to push my onc. I started talking to him about it while still in chemo and when I was done chemo he agreed. So I started it as soon as I was done radiation.
2. I am not in a trial
3. My onc gets zometa thru insurance by saying something about osteoporosis risk from the ai's. Insurance has never given me an issue about approving it. I am taking it to prevent recurrence. Following the gnant study and the other study to see outcomes of the trial
I am interested in the statin. I have seen that pop up here and there. Can you guys tell me about how that is supposed to help? I could go to my primary doc and talk to her about it but would like to have some information about how it could help. -
Wintersocks, I am 2 years and a bit from surgery. My surgery was 3.5 months after DX, because I had chemo both before and after the BMX.
Did you ask why she put that chest wall thing in your report? -
My MO told me in late 2010/early 2011, while doing chemo, that once I completed the most active parts of active treatment, he would put me on zometa, as the thinking was that it could be preventative for bone mets. I was pre-meno at dx, although chemo took care of that, and am on Tamoxifen (a little over two years). During that time, the zometa suggestion went away, as it was determined that it doesn't help prevent bone mets.
I did ask him, based on what I've read here and my own searching, about metformin at my most recent visit (last month) and he said not enough info yet. He is the head of the cancer center where I receive treatment and one of the top oncs in town, and he's very conservative - he didn't get that job by being a maverick. I do push him, though, and I don't do everything he's suggested. Some of it is covering his/his institution's butt.
(Yes, institutions have butts. Per Citizens United, corporations are people, and since people have butts ...). -
Hi Momine,
No, I haven't seen her and I am not due to go back now until April. Even then I will probably not see her but most likely the senior registrar who I don't really like as he seems to not want to answer any questions, just a quick check and out. I suppose I could ask my breast cancer nurse. It's like a haunting to me, the chest wall thing and I can only expect that she is expecting me to recur.
I had neo-adjuvant chemo too. I feel quite blue today, like the cancer can never be escaped from. Oh well....... -
Thanks luckpenny and mmej for sharing about the zometa. I am going to talk more with my oncologist about it. I wish my doctor would be more informative on those things. She wasn't checking my Vitamin D and my family doctor wanted to check it and it was really low as I was taking supplements for it. She is very kind and did order a bone scan after an extended period of hip pain from the aromasin. Still, I know I need to lose weight. I've gained A LOT since I started all this and I know it's an important factor in preventing recurrence and she never seems concerned about it when I mention it. It just makes me wonder if she is not telling me things I don't know of that could help.
Wintersocks, I asked my MO about when to begin counting toward the 2 yrs, 5yrs etc and she told me that it is from the diagnosis date. I was happy to hear that because I was thinking more like the last day of radiation or something. I see you are almost at 2 years...that's great! I hope you feel better soon.
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