A place to greet and meet newbies to stage III
Comments
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MinusTwo, nobody has ever told me that I'm "NED." But why would they since they aren't looking for any evidence of disease beyond asking me how I feel? In fact, if any of my docs ever do tell me I'm in the NED category, I'm going to ask them how they know that. It's like closing your eyes and plugging your ears when the roof is leaking then saying that there's no evidence of a problem.
Momine, you are lucky to have gotten so much follow up monitoring.
TuffMama, I'm glad my post helped. It's nice to know my experience can be helpful to someone else.
Jenwith4, I have most of the problems you posted about - exhausted, could sleep all day but I don't go to bed early, neuropathy in my fingers, etc. I don't have arm lymphedema, but I do have leg lymphedema from having lost pelvic lymph nodes to ovarian cancer. I'm a year post-treatment and somehow not "over it" yet. I wish we could all get together for lunch and a group hug. I'm glad you came back and reposted when you didn't get responses before. Yes, we all understand!
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Minus Two - I'm thinking the same thing. I'm due for a bone density test this year - I think - but my last one was stable. I've taken Actonel, which I couldn't tolerate because of GI problems, and Reclast. I was due for a Reclast infusion about the time my cancer was discovered. I dodged Prolia with my new MO (I moved here in July, just after radiation and in the middle of chemo) due to the fact that I needed some dental work done. My dentist thinks all those drugs are terrible and has some horror stories to back up his opinion. I think I'll just keep dancing around the topic. I take calcium and vitamin D and eat a healthy diet. I'm also very careful. I'm one of those "older" women who could wind up in a nursing home. Not interested.
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2Tabbies - I was fortunate that my MO believed in testing after treatment. The first time I had a clear MRI. After the recurrence I had both a clear PET/CT and a clear MRI after chemo, surgery & rads. Needless to say I expect I was NED when I finished all that treatment. As of today - who knows. NED is only for that moment - no evidence of disease. At least all the treatment got rid of anything that could be felt or seen - so at least for one day I could say I was NED. My original MO planned PET/CT or MRI at one year intervals for 5 years. New MO - not really interested in ongoing testing. I'm not sure how I'll handle that when the year is up.
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Thanks 2Tabbies! Today was a better day....
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Minus – at least for one day I could say I was NED – exactly! My MO says it takes a billion – BILLION! – cancer cells to even show up on a scan. The chance that cells may have escaped the wrath of chemo or rads seems to me pretty good. I doubt I will ever agree that I am "cured", even if NED lasts for years. I've seen too many reports of recurrence many years out. I will always be looking over my shoulder.
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Magdalene51 - Ditto that. I know this is a stupid question, but do you begin counting your survival after the surgery, or does it start after you've completed chemo and radiation. The reason I ask is that someone said I was a year out; that's a year from the surgery, but I just finished chemo.
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Where is the Start a New Topic button?
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Tuffmama,
my surgeon said survival starts when the cancer is removed: ie at surgery, so that is the date I go with, and it makes sense to me . I was dx three years ago in Feb 2012. However, I do not count til August, for that is when I actually had the mx following neoadjuvant chemo.
There is always a debate about this, as I have seem it mentioned many times on BCO, different people count survivorship in different ways and times. But as I like and trust my surgeon I go with what she says. She knows more about it then I do.
i hope that helps.
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Wintersocks - Thanks. That sounds reasonable to me, and it also gives me a year under my belt, so to speak.
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TuffMama, that was a good question about when the clock starts on survival. I didn't know that either. From what my MO told me, it doesn't matter that much in my case though. There is no magic date like 5 years out when I can call myself cured virtually for sure. Apparently, with hormone positive bc, there's always a chance of recurrence even though it decreases with time. With hormone negative bc, a recurrence is much more likely to occur in the first 5 years. After that, it's unlikely. So I guess I wasn't all that concerned with exactly when the clock starts. Curiously, this is the same MO who said that I should "consider myself cured" when I had finished active treatment because "most women" don't have a recurrence. I suppose that's one way of looking at it. Consider yourself cured until there's evidence you're not because it's true for the majority. I guess I've landed in the minority so many times that I feel like that would be hiding my head in the sand though. There are things on my bucket list that I'm trying to do a lot sooner than I would if I knew I was cured.
Magdelene, you said it right. I'll always be looking over my shoulder too, and not only for bc. I also have a form of non-Hodgkins lymphoma that isn't curable. It may never cause me any trouble. But then again it might. I have a friend who is now terminal with it.
MinusTwo, I'd like a scan about now - 1 year after the end of active treatment - just to see if at this point I'm NED. We don't even know if the chemo did any good since my type of bc doesn't respond very well to it. Of course, surgery removed what they could locate, and we assume that radiation killed anything left in the local area. Beyond that? Crap shoot!
Jenwith4, I'm glad you had a better day. It's a roller coaster. That's for sure. I still fall into a pit of blackness now and then.
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2Tabbies, the thing about ILC "not responding well to chemo" is a bit of a misnomer. It comes from the fact that when you give neo-adjuvant chemo, ILC patients are less likely than IDC patients to obtain a "complete pathological response," [CPR] i.e. all the cancer disappears. However, what is often left out of the explanation is that even for IDC, this result is rare. CPR happens for less than 20% of IDC patients, and for 10% or less of ILC patients.
However, recent studies show that the survival benefit of chemo is as strong for ILC patients as it is for IDC patients. In other words, the lower incidence of CPR is not that important in the scheme of things.
Since I had chemo before surgery, I had the experience of feeling my ginormous cancer virtually evaporate in the course of three chemo treatments. There was still live cancer at surgery time, in keeping with the above, but we could not find the tumor with our fingers anymore after the third chemo. I had what is called a "partial response," but a strong partial response. A partial response is in itself a good prognostic factor. In short, assume the chemo did its job.
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Momine, that's quite interesting. I'd like to believe the chemo killed every single cancer cell. I know about complete versus partial response, but I have to believe what my MO told me. (If I didn't, I'd be going elsewhere.) He's supposed to be the best, and I've had more than one other doc tell me he was brilliant. He's real big on getting the most up to date data also. He told me that chemo would only increase survival by a small percentage so if the likelihood of recurrence (based on oncotype) was low enough, it wasn't worth the risks of chemo. My oncotype score was just high enough that he thought it was worth it. In a way, I was glad to get a systemic treatment and hopefully kill any stray cells floating around. I had a gigundo tumor too. If it would have shrunk significantly from neo-adjuvant chemo, I'd have hoped I'd been offered that option so that the surgery might have been easier. I'll have to ask him about that the next time I see him.
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Tabbies, what your MO said is true, but what he means is the thing I explained. However, newer studies question even that and increasingly posit that the lower complete pathological response rate in ILC is due to factors other than histology (more advanced stage, higher rate of ER+ etc).
The part about the limited advantage of chemo and not giving it with a low oncoscore is not particular to ILC. Because neo-adjuvant chemo is unlikely to lead to breast-conserving surgery for ILC patients, it is not generally recommended for us. I think I got it because I had skin involvement, but I am not actually sure.
Here are a few abstracts:
"For histology (lobular vs. ductal), endocrine sensitivity, and proliferation, no associations with chemotherapy response were observed." No histology link
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Okay, so I know I have a sinus infection - I've been on antibiotics for just about a week. And I've had trouble with my eyes recently, I posted about it somewhere on here - I've been to an optomologist and an opthamologist...both agree that my eyes are healthy but that my prescription might be a little off. It was just changed, so we aren't changing it again and I'm going back in three or four weeks to look at them again before we decide if I need to change them again.
My head hurts and my glasses feel wrong.
You see where this is going????
ARGH, I hate that I had cancer.
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Jen, I've was told by another bc friend that she needed to wait months after chemo finished before getting her prescription changed because her eyes were always changing. Ditto on the hating:
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Me hating too! It's getting to the point that I don't even want them looking for trouble in me anymore! I will just shut up and take that stupid lifesaving pill! They will probably never let me stop...
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Momine, I'm confused. To me making a general statement that the type of cancer I have "doesn't respond well to chemo" is quite different from what you said about a complete response being rare but the survival benefits clear. That's not at all what he said to me so unless the situation has changed since Sept. 2013, I don't think that's what he meant. Maybe it's because I'm stage III and ER+. (I don't remember how ER+. I'd have to dig out the records.) But he specifically said there was only a small survival benefit from chemo, and that Tamoxifen and the AIs were what would benefit me the most. He almost didn't give me chemo at all, and he only gave me what he termed "chemo-lite" - 4 rounds of taxotere and cytoxan. If the benefits are so clear, maybe I should go back and ask him for a do-over with the heavy duty stuff. I'd do it if I thought it would get this monkey off my back. Only one of the 3 abstracts you linked mentioned what type of chemo was used, and that one used different drugs from what I got. None of it probably matters anyway. I'm afraid I've gotten pretty cynical about my odds after having twice ended up with cancers that the statistics said I was unlikely to get. I mean, nobody's even heard of Waldenstrom's macroglobulinemia. Somebody ends up at the tail end of the bell curve, and that seems to be where I find myself a lot. Thanks for the info though.
Adding my ditto to hating having bc.
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2tabbies, I am really wondering what he meant in that case. If you do ask, it would be great if you could report back. The only other thing I can think of is the cancer being grade 2 (like mine and typical of ILC). A grade 3 cancer is growing faster and will therefore respond better to chemo than a grade 2 cancer.
It is true that the hormone treatment is the game changer in treating ER+ BC. Mine was ER+ as well, but nobody seemed particularly shy about poisoning me to within an inch of my life anyway ;p
When I run my numbers in cancermath, it gives me the following 10-yr survival odds:
Surgery only: 53%
Surgery + AI, no chemo: 67%
Surgery + chemo, no AI: 77%
Surgery, chemo and AI: 83%
But maybe cancermath is not "all that."
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yes, and NONE of them have radiation in the equation.
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Tomboy, could radiation being left out be because it is used for local reccurance and doesn't really impact survival
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Tomboy, I have noticed that too, but I am guessing it may be because radiation is dependent on more factors and because the studies tend to be a bit all over the place.
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Momine, I will report back after I see my MO. That reminds me that I need to call and schedule an appointment. Somehow that seems to have not happened when I was there in November. That's interesting about the cancermath not including radiation.
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2tabbies, appreciate it. I really do wonder about this one, as a fellow stage 3 ILCer.
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I was just thinking though, that before my cancer was discovered, there WAS no local control, and see how it spread? I never though of radiation as just helping my breast, but, as killing any fresh new cells that may have developed, and then have THEM spread, before detection.kill em in the boob before THEY found their way out, too. There was a much bigger mess in my armpit than my breast.
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I am new to these boards and wanted to put in my HELLO!!!
Hello!!I have just finished 8 rounds of chemo and feel like crap but I am glad to have it over and done with for the moment anyway. I am the dreaded triple negative and my spirit was crushed when my onc advised me to keep my med port for at least two years...
.Ugh I too hate hate hate having cancer. None of us will ever be able to go back to the before cancer care free days of Before Cancer.
peace
nancy
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Nancy, welcome to this group. Sorry that you had to join us.
Yay for being done with chemo!! Hope your SEs weren't too bad!
Are you doing radiation therapy
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Hi Nancy, when I came to this thread I felt a little better being with others in the same boat as me. Hope u start feeling better.
DD
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Nancy, YEEHA on completing chemo. I remember being so weak & fatigued. The worst is behind you. My oncologists had originally told me I needed to keep the port, and then lo & behold 6 months later she said yank it. that day will come for you also.
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I am new to this thread but have been on bco.org since beginning my journey in June '14. I finally have the time to take a deep breath and really search bco.org and see which other threads are out here and stumbled on the Stage III area. Not sure how I missed it early on. I am at the end of my treatment and wanted to connect with others. I still feel many SEs from chemo and my skin didn't fair too well during RADs so at home recovering. Fatigue is the worst for me right now. I worked throughout chemo and just came off work as the RADs burns just didn't bode well with me. So I have at least a month to just rest and relax. Didn't realize how much I needed it.
I see a few familiar names after reading several pages of post. I wanted to introduce myself to others and say Hello! Look forward to joining in the conversations here and pulling on the wealth of knowledge, experience and support.
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Hi LadyB! Welcome!
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