A place to greet and meet newbies to stage III
Comments
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follow up mammo's
there's a difference between mets where the original cancer has migrated and a second occurrence of cancer ....
i'm 10+ years out and my sister is around 5 years out .... not much alike in our two breast cancers so hard to correlate the two ...
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But it doesn't necessarily mean when we become symptomatic it has spread every where. it is quite possible that it it is in the bone only or lung only. At the this point surely it can be arrested and stop spread to the brain or liver for example?
Otherwise, there is little point in the 'two week rule'. I mean we may as well just saunter into the docs at any time if it has already spread beyond the point of containing it.
It doesn't make sense the whole thing.
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Kathec, in my case I have not nothing left to mammogram. But in any case, finding it in a breast is different from finding mets in another part of the body. A tumor in the breast would either be a local recurrence or perhaps even a new occurrence of a different breast cancer. Like you, I'm still all for catching any mets when they're too small to cause symptoms. But when I asked my MO if as scan would catch it "early," he literally said it's too late for that. That made me feel awful like I hadn't been as vigilant as I should have been even though I did all the things they tell us to do. I'm still frustrated and don't want to accept that there isn't some sort of monitoring that would be useful. I guess it's like Lolis said. The treatment will either work or not. But damn, that make me feel helpless and angry especially since the type of bc that I have doesn't respond well to chemo. I hate this.
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2Tabbies, "it's too late for that"? What does that mean? Because we're Stage III we can't catch mets early, when they're (hopefully) small and manageable?
I agree with you--the whole "it doesn't matter" philosophy drives me nuts.
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sbelizabeth, I guess he meant it's too late to catch the cancer early overall since we didn't catch it until it was stage III. (That's what I get for having the stealth breast cancer - doesn't show on mammograms and doesn't feel like a lump on palpation.) He also said finding the mets on a scan would only mean I'd know I was stage IV a few months earlier than I would have without the scan (i.e. when symptoms appeared). I told him that despite the fact that it might not extend my life, I'd want to know those few months early. I'd quit my job since it would no longer be necessary to save for a lengthy retirement. Then I'd enjoy those few symptom-free months. He admitted I had a point, but said that he couldn't practice medicine based on that. However, he'd be happy to "work me up" if I came in complaining of symptoms. Hmmm...what symptoms should I have?
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I agree with 2Tabbies. Wonder what symptoms should we "present" in order to get the work up? I'm getting vague answers from my MO about pain and CA blood test (which are rarely reliable anyway).
I'll be finishing Herceptin the end of the month - 18 months of continuous treatment for a recurrence after BMX w/clear margins & nodes - two different chemo runs, surgery, radiation... I am aware there are no guarantees but I'd like a PET/CT when I'm "finished". It makes a difference to me if I'm NED when I start this next "while" or if I should drop everything now and go to Tahiti & the Galapagos Islands - not to mention the Grand Canyon & Alaska - while I feel relatively good. Just how I'd like to manage my life and my finances going forward.
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My MO has ordered PET scans yearly for me. The first was for staging after my lumpectomy for a "tiny" lump with no palpable lymph nodes turned out to be Stage III nasty. The next year, she ordered one before my big reconstruction surgery, just to be sure where we were before I went under anesthesia for twelve hours. This year, she found a big lump on my non-cancer side that we were pretty sure was a fat necrosis from the reconstruction but was a reason to get a PET.
I think it depends on your insurance. If you present with a suspicious cough, or new, persistent pain somewhere (like your back, a hip) a PET is justified. For myself, I'm always happy when the PET comes back with good results, but I'm always thinking about radiation exposure, with the knowledge that a good report doesn't mean something's blossoming somewhere, just too tiny to pick up.
Like you, 2Tabbies, I hate this. BUT...we have lives to live!
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My MO said that it takes a billion cancer cells to be detectable in a scan.
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i am well aware that cancer in the breast or near it, is only a recurrance, local or otherwise. or a new primary in either breast, or remaining breast tissue. mets are only when it is in an organ, or in your bones.
my onc did agree to give me a 2nd pet ct scan, because the first and only one that i had had prior to that was AFTER my surgery, which still piSSes me off, . because if i had been found stage four, then i may have opted out of surgery all together, many do, and go straight to hormonals. i asked him if he would order pet/ct because when i finally got around to reading all pathologies, clinic notes, etc, i saw where the first one i had, mentioned right renal uptake, nodules in my lung, and bony island(MAYBE) in my chest, and schlerotic lesion in my lower spine. huh. no mention was made of any of these things on the second one that i had, a year later, after chemo, and after 6 months or so of anti hormonals. was/am i stage four? who the heck knows. they arent telling me. when i told him i was curious about those things, that is when he said "it was not unreasonable to find out" and he ordered them. poof, they are not there?
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kathec, sorry if I misinterpreted your question about mammograms.
It must be frustrating to have had such different results on the PET scans. My MO said their are a lot of false positives. Maybe some of what was seen on the first one was that or the chemo/hormonals knocked it on it's butt. Does you doc have any explanation? I can understand your frustration. I hate being in the dark.
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.no. he does not. last time i saw him, he told me i looked great, showed me the new petscan on the monitor, where my body was barbie sized and clear, except for the outline and vital organs. he said my blood work looked great, and said see you in six months! i am going to have a letter to give him shortly that i will give to his phys ass't.
i am sure that i have been a royal pita that they are glad to see me go! i knew nothing about bc when i got it, and have self educated here and with textbooks, pubmed, journal of oncology, etc, and i do tell women do your mammos. i still cant get my sister to do one. i had stopped for several years, because it kept being nothing, and i didnt even know that being dense was an issue.
wow, it looks like you have been through the ringer several times! you must be made out of some very strong stuff!
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kathec, that sucks that your doc doesn't know why you different results on your scans. I think you said you've found a different oncologist, right? I hope that person is a better fit and can give you some answers.
I'm sure my docs think I'm a royal pita also. I ask tons of questions. I went for second consult with the PS who's scheduled to do my LD flap because after reading the book he recommended I had a lot more questions. I got the impression that it was a bit unusual for somebody to research it as much as I had. I'm sure he thinks I'm a neurotic worrier, but tough. I don't like surprises and feel better when I have all the information - the good, the bad, the likely and the unlikely.
I don't know how tough I am. The ovarian cancer was relatively easy. It was stage 1a so I "only" had 2 surgeries - the hysterectom/oophorectomy then an abdominal exploratory to look for mets and biopsy lymph nodes. My lymphoma (Waldenstrom's macroglobulinemia) has mostly been a non-issue so far. They don't treat it until you have symptoms that warrant treatment, and so far I haven't. I just get blood tests to monitor it a couple times a year. Breast cancer has been worse than the other 2 put together. I am starting to wonder why my body seems to be such a good incubator for cancer cells. Nobody has an answer to that question.
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Has any of you ladies changed your diet after treatment?
I am planning to get some pH strips and check the pH level in my body on a regular basis, switch to a vegetarian (I will still eat fish) non-diary raw diet, making cabbage, broccoli and cauliflower the focus of the diet. And obviously start working out a bit more.
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I'm pretty new here and I guess I just want to vent. I spent time after my diagnosis exploring all my options and as much as I hate it I'm going to have to do surgery and chemo. I hoped that I would be able to use alternative therapies, I even switched doctors but they both said the same thing that without chemo my odds are not great. I'll use natural therapies to help me deal with the chemo. Here's what frustrates me, my new doctor made it sound like the couple of months I've spent figuring things out were a mistake. He said that if he'd been my first doctor, he would have insisted on the mastectomy and node removal immediately. The first appointment I could get including the plastic surgeon is in late October. Now I'm more than scared than ever. Anybody else go several months after diagnosis before starting treatment?
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Natural Healing - you don´t mention your hormone status, but I had 7/14 nodes and Stage IIIa and I was told by several Oncologists I was/am high risk of recurrence. However when I researched it - chemo gave me between 8 to 12% benefit whereas it gave me 25% minimum risk of serious complications if I did chemo! Regular exercise has a 50% benefit on breast cancer recurrence and so do other things. I reasoned that I could make up the 12% by doing other things that are not factored in to the statistics............
If you are hormone positive you could ask about starting anti hormonals now, no its not standard protocol but its not dangerous either, and its a systemic treatment.........
I hate the way Oncologists scare monger and almost bully.........one of mine was so involved in protocol he did not even look at me once in my first consultation!!!! He just wanted to process me, so please don´t forget that you also have some innate wisdom and know your own body ......
Be careful with natural remedies and chemo as you need to investigate which are safe to use as some counteract the effectiveness of chemo!
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I forgot to update my profile. I'm negative across the board. I have a homeopathic doctor involved to direct my fasting, vitamin injections, etc during chemo. Thanks!
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I knew I was late in diagnosis and just wanted chemo ASAP.
Lolis, I want to do the whole veggie diet but can't seem to. I have started using the blender to eat more veggies and fruit. Easier to drink my veggies than eat them. I started doing the non- diary thing, but now hear such diff views, I started having diary again although got rid of milk. Am definately eating more veggies and fruit though. I haven't even finished treatment yet. Congrats on finishing! How is the tamoxifen?
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Naturalhealing, I know this seems counter-intuitive, but during chemo and radiation, my oncologists, for whom I had great respect and great relationships, cautioned me about supplements and anti-oxidants during treatment.
If you're going to go through the discomfort and downside of chemo, you want the drugs to hit the cancer cells hard and make them die. You don't want to support the cells targeted for destruction
Just my two cents! Best wishes throughout your treatment and recovery!
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Natural - My MO & RO both said the same thing about anti-oxidants. It made sense that i didn't want to promote cell growth when they were trying to kill cells that were growing too fast w/chemo. I was allowed to continue w/a multivitamin and calcium w/D, and he added B-6 and B-12 in an attempt to counteract neuropathy. Everything else was put on hold until treatment was finished.
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Natural, sorry you're on this cancer train ride with the rest of us here. It sucks. I'm glad you have decided to go ahead with chemo though. I think we all would have avoided it hadn't been our best bet for beating this thing. I've known a few people who went with natural treatments only for cancer or other serious diseases. It didn't work out so well for them. Hang in there. You'll get through the chemo. I'm betting you have healthier habits than the average person so might bounce back faster.
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Lolis, I've been a pescatarian (vegetarian except I eat fish) for years. Sadly, it hasn't kept me from getting cancer 3 times, but maybe I'd be even worse off it I'd been eating an unhealthy diet. Who knows. I find it a bit frustrating that I've always had healthy habits yet keep getting cancer. Anyway, as far as diet goes, I'm just still trying to stick with mostly whole foods, lots of fruits and veggies, beans, whole grains, etc. While I certainly eat some raw foods, I haven't seen anything to convince me that a completely raw diet is advantageous. Some nutrients in foods aren't available to the body unless it's cooked. I hope you settle on something that works for you.
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2tabbies...just wanted to say how I admire your spirit! Taking on the fight of cancer 3 times has to be a bit overwhelming to say the least. Hopefully BC will be the last for you and you can focus on just being healthy!!
Genny5775...so thankful you PT scan was clear...what a wonderful relief !!
dancingdiva....admire you trying to eat healthy while in treatment. Don't be too hard on yourself if all those veggies are not appealing...I had no love for veggies while in treatment, but once I was done I started to regain a more settled stomach and created a healthier menu for myself. Hope your treatments are nearing the end.
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2tabbies, I too hope that BC be the last cancer you will ever fight!!!
I think I will try being vegetarian and see if that make any difference especially while on tamoxifen. So far it hasn't been bad, I am only taking half a dose (10mg) for 2-3 weeks and then switching to full dose after that. I still keep having night sweats and hot flashes. The hardest thing will be to give up coffee.
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Hi all, just wanting to update on the latest curve balls getting thrown at me. I had my sims and tats done 2 weeks ago. Last Thursday my RO calls to tell me that I fall into the 1% of the population that cannot have regular rads so I'll be needing the special VMAT machine with the ABC breathing. The only place that UH has the machine is downtown at Case Western, which is about an hour drive. (the rads place I thought I would be going to is 15 min away). Here's the even bigger catch, my ins covers all of UH except main campus which is out of network. I found that out the hard way which is a whole other story. So RO makes me an appt to go there last Friday to repeat sims and learn the breathing technique thinking they could get Med Mut to wave the OON payment since it's not available anywhere else. WRONG! Med Mutual says I will have to pay the $5500 OON deductible. I've already paid a $5000 deduct when I began tx, not to mention my DH and I pay $1000/mo for health ins. Cleveland Clinic on the other hand is in network but that means finding a new RO and getting my records transferred and starting all over...grrrrr... so that's what I'll be doing today unless UH figures something out, they really don't want me moving my business to the competition. My DH said would u rather just pay it. I said no way, we could take a heck of a nice vacation on $5000 when this nightmare is over. Anyway, I was going to wait to get on the AI's till I was done with rads cause ther's a clinical trial I'd like to get in on but now I'm getting scared. Did any of you go on AI's while getting rads?
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I started AL´s before doing rads as I refused chemo........I continued with them all the way through rads too........what a nightmare for you,hope you get it sorted soon
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I've started an AI already too - - I started last week, I'm in my second week of rads. No reason to wait...except maybe for tamoxifen.
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I started Tamoxifen already, first week, and don't start the rads until the end of the month. When I asked my RO if it's okay that I started Tamoxifen she said that there is no issues being on Tamoxifen and rads.
I have stop drinking coffee as last night I woke up at least 3-4 times due to night sweats. I can't imagine how it will be when my hair is fully grown and the night sweats.
Has anyone on tamoxifen noticed any changes in the hair fullness? My hair was thin and I am hoping it doesn't get any thinner while on tamoxifen. I know it's silly to worry about this....
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Lolis, nothing is silly with this darned disease. With me it's my eyelashes, I had long ones here and there that never fell out so I ended up cutting them off so I could wear a little mascara on the short ones but they seem to be growing in all different directions. I used to have nice eyelashes, hope they come back. Silly? maybe but that's my thing. I've been on the phone all morning trying to resolve this insurance crap. I ended up making an appt with a Cleveland Clinic RO for Thursday just in case. My RO and UH still trying to get Med Mut to approve it but I figured better to have thee CC appt and cancel it if they figure it out. So now I'm going to gather up everything I have and get it faxed to CC just in case. I'm 56 and post-menopausal so I'll be on the AI's, only now I may be switching to a Clev Clin MO so I'll hve to work on that next to get started on it. What a pain.
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genny, I'm so sorry you're having to deal with insurance crap. That's the last thing any of us needs when we're going through cancer treatment.
I'm 57 and post-menopausal also, but I'm on Tamoxifen which I started after I was done with rads. I thought the only reason to wait was to keep me from having to deal with too many side effects at once. My MO said I'd be on it for a couple years then switch to "something else. " I assume he meant an AI. I'll have to ask him why he put me on Tamoxifen since I am post-menopausal.
Good luck with your insurance issue. I hope UH gets your insurance company to relent. They are being unreasonable.
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Lolis, I thought I replied to you last night, but I don't see that post. Did I hallucinate it??? Do you think coffee makes your hot flashes worse? I haven't noticed a difference on days that I drink it versus days that I don't. The hot weather this summer sure made them worse though. I was worried my hair would thin because of the Tamoxifen also, but it hasn't. It's not silly. All these changes are an assault on us. We just want something to be normal.
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