Any 40-ish survivors?
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seven of us at work and 2 of us on my wing (6 women on the wing) and we had surgery the same week... actually, all 7 of us have had surgery since December... too many cases of BC...
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Bdavis, that is scary, so many of you having BC, is it something in the water?
I have been watching documentaries on bottled water and how our food is processed and its no wonder why cancers of all types are so frequent these days. I have stopped drinking bottled water and I wont let my children drink it anymore. I carry water bottles with me in the car and my purse so that we can refill from water fountains and sinks. Regular tap water gets tested extensively many times a day where as bottled water doesn't and who knows what chemicals are being leeched from the plastic bottles.
On a different note, has anyone noticed their skin is more sensitive to the sun since chemo? I was out in the park the other day for a couple hours, sitting in the shade and I am burnt to a crisp!
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Page 8-WOOT! I never thought it would take off like this, but I'm excited
I think there's too many of BC everywhere! Everyone I have met during this has had a family member or friend who had it. My BFF has had it twice, and she's 4 years younger than me. First case was when she was in her 20's. I am lucky in the sense she has been a great source of info, and lets me look at her boobies whenever I want. Whee!
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My chemo group has completely dried up! Boo hoo. I really felt connected to those ladies. And a lot of the ladies in my Jan 2010 mastectony group have disappeared as well-they check in once every 3 weeks or so...waaaaah
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Yes twinmom, my skin is much more susceptible in the sun. I burn very easily, so wait until late afternoon to do yardwork.
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SusanHG, not really sure where Kenmore is, but I think I've been through it. Towards Buffalo maybe? Wherever you move, don't move to Clyde, so many people had ca there it was crazy. My boss had prostrate at the same time I had Brca, the guy behind me had brain, everyone at one point! I told DH today we should turn AT LEAST Mennonite, if not altogether Amish, because THEY do not get cancer, heart disease or any other odd crap. I'd start a garden but I'm too tired. But I think there really is something in it, when you look at the Amish & Mennonites. they are still short, have small feet, loads of energy, while everyone else is growing bigger and bigger. I'm going to have to tell someone to research that. Just as soon as I figure out who.
Twinmom, I read the yearly water report and some of those readings are from 20 years ago. Really? What's the matter with this year's? And not just some odd chemical you can't pronounce, just your basic arsenic and so on. I think you're on to something there. And yes, my skin is sensitive, I now have freckles and if I stay out too long I blister up. It looks gross. Luckily I am freezing cold all the time and wear a jacket year round. THAT gets me more looks than being bald ever did!
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I am not more sensitive... I went to St John in March and was super careful, but when I usually burn, I didn't this time... Go figure... I was quite good at wearing sunscreen though.
I am not a huge bottled water drinker... not sure that's it... I think it may be the polluted NJ air or the chemicals that are in our food, or just bad luck... wish I knew, then I could protect my daughter... It seems the percentage of women is increasing... a few years ago it was 1 in 9, now its 1 in 8 and soon it will be 1 in 5.
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So I go to the onc a couple of days ago, and according to them my bloodwork looks good, so im fine right? my armpit still hurts and i feel a lump rolling around in there, but she says its just scar tissure....and then she starts talking to me about quality of life...jeeze they told my friend the same thing and she passed away a couple of months ago. So my question is this...is it just a matter of time? Once you have this cancer and you go through the MX and the chemo and the rads, are you cured?
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Great question-wish I had the answer...for myself, and for everyone here.
I had a BMX, chemo (no rads), bloodwork and follow up with the Onc every 3 months...PET scan and breast MRI after chemo was done at my request...but do I feel cured? Honestly, no. I will always be looking over my shoulder. Maybe in my case it's a little different because I'm BRCA1 positive?
I have a really dumb question for my Onc when I see him...how would you know if I had a recurrence? My bloodwork? The brief physical exam that's done each time?
The women who had recurrence with mets to the bones or an organ, what was the tell-tale sign?
Being on this site daily now is making me ask more questions that I don't have answers for. Humpf
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I have asked that question and I am told no scans are in my future... When I say I am fearful of recurrance (systemic) and how do we track it? I am told there is nothing to do unless I show symptons... So if I start getting headaches maybe I have scalp mets... If I have sore bones, bone mets... trouble breathing =lung mets... So basically if I ever hurt, maybe I have a recurrance. That's not a good plan for me... I need something more concrete, right? Don't you?
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I have had the same questions for my onc...
Several women on this board w/ Mets had no symptoms when scans discovered their mets. If we don't get scan's and our blood work is always within normal limits (even while on chemo) then how do we know??? If I had not had my thermogram, we would not have discovered the thyroid cancer for a year or more (per my endo) and by then my treatment would have been more intense. So are we just supposed to trust our doc's when they say NED wth no supporting dx tools to verify??? I agree with Betsy, I need something more concrete...
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Michelle-what's NED?
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"So basically if I ever hurt, maybe I have a recurrance. That's not a good plan for me... I need something more concrete, right? Don't you?"
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NED- no evidence of disease
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I went to Duke Hospital on Wednesday and after waiting in the room for over on hour with a gown on, I was examined just to find out they did not even re-read all my path slides. Finally they agreed that it might be a good idea to do that. They will re-read them and let me know in about 3 weeks if they have any additional opinions (REALLY?) I was told that the BMX took care of my grade 3/HER2+ cancer and I should just go about my business. When I asked about recurrence/mets they told me that it was unlikely since my large DCIS (6+cm) with microinvasion of less than 1mm was gone. If my invasion was more extensive they would recommend chemo/herceptin, but since it is so small they recommend nothing. When I asked about further testing in the future I was told that local recurrence was the most likely and that I would feel a lump. That's their idea of detection? I actually have to feel a lump. This is not ok with me. They did tell me they did not want to poison me with chemo since they didn't think I needed it, but if I insisted they wouldn't stop me. What does that mean? What am I supposed to do? I am trying to get info on other sites, etc., but I need help making a decision. I am going to get as much info as I can and talk to my own onc. when I see him in 2 weeks. Ugh!!!!
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mom2one,
Sounds like a very deflating experience, you would have expected more at a major medical center. I am sorry your experience was not better. Maybe your local onc will be more proactive than just waiting for you to find a lump, periodic MRIs, something? Now that I am done with chemo, I believe standard of care is no scans unless I have symptoms, kinda of scary. At least with implants I can have MRI every few years to watch the implants.
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good morning ladies, Last day of FEC yesterday,went smoothly, had a great nurse this go around and my viens dont hurt like they did with the second nurse i had, wont let her near me again. 1 poor one out of 3 not bad and I think the second one was quite new. Onc added in some new meds for sickness taking ativan on top of 3 others and so far much better than round one and two but this is my first morning so we shall see. I only have to take the steriod booster for today instead of 3 days like last time as it made me so weepy lying in a fetal postition crying eyes out allt he time I was pathetic. anyone noticing their typing skills going to shit?? I definetly am more sensitive to the sun, not that we have had much here in Alberta but the two days we did I went on the deck for about 20 min and was starting to burn already will have to wear bit royal wedding hats all summer for sure
. I am so glad to be half way done,moving on to docotaxoral for the next 3 nurses say it will be much easier on my veins so i am happy about that but geuss it brings along some bone pain,poo. Oh well 3 more I can do this.My parents are here, first time I ahve seen them since diagnosis so was a bit akward at first but getting better.nice to have someone doing my laundry and cooking for few days for sure.Also I think they actually get what I am going through now..They came with me to chemo and my dad broke out in cold sweat just from them putting in the iv so he had leave lol didnt need him passing out there. Mom and I talked a bit about our feelings, just scratched the serfice but it was a start, sorry about all the spelling mistakes brain doesnt connect to fingers as well right now. I am off work now for the week then will return for the next two.It has been working very well, boss has been amazing through all of this, he is even paying for half the time I am away, i am lucky to have such caring people aroundme, too bad they werent my friends well alot of them not all, but they just seemed to disspear after finding the news. Nice .ok going to get up and see what the folks are doing. had to PVR the royals for them so guess I will be watching that on and off today lol maybe I will just take a sleeping pill
hugs to you all
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mom2one - I had a similar experience at CTCA, I don't think they ever looked at my path slides and I am not sure they even looked at all the films I brought. Over all I was very Unimpressed with their 2nd opinion and the oncologist. I will admit the facility in Phoenix was new and they had only been open less than a year but really it is the CTCA and I expected alot more for my three day evaluation then some lab work and telling my story over and over and over again...0
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Hi burley and friends....WOW what a response it seems as though I am not the only one going through this....its like they put you through hell and then say "ok now go on with your life and don't worry about it" Ummmm how are we supposed to do that? Went to the onco with pains and aches, but I guess just suck it up and deal with it. Also was supposed to have my 3 month out mammo and the nurse said "didn't your doctor order that....DUH anyway lol enough venting, just waiting to have my recon now....but my question is if you have had a mx how do they monitor that because they dont do a mammo on that side, do they just go by blood alone? or wait for a lump to emerge? o.k. enough with that my family and I are going to the beach on Mon, of course I cant tan like I used to and having 1 boob may be a wardrobe challange lol....but still looking forward to some relaxation!
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It is stupid and especially for you girls with the recons. I get a mammo every 6 mo, year, whatever, but they ALWAYS see something, and are forever biopsying away, I have more holes than swiss cheese. And NOW 3+ years later, after feeling various lumps and bumps, they tell me mri and mammo CANNOT see through scar tissue anyway, so what is the point? If you feel like crap, get a scan, but none of them are worth anything or the doctors don't act on them, in my opinion. One place I was going to just gave me the feel good results, but if I push hard enough because I feel like crap and get something done somewhere else, they find it. After pulling every recurrant calc out of me last year, I have more this year, but they want to watch it. Really? And after a recent bone scan where my sternum lit up they are going to watch that too...I think they forget that cancer does not go away, it is not ever cured, it goes into remission, that's it. Sometimes it stays in remission forever for the lucky ones. Most of the time it is in the lymph nodes and so on to the bloodstream...by the time they find it again it's really distant, but if they pay attention at all it's to the breast area where it started. A body scan every year might help, but I don't think insurance companies would cover it. Time goes by and you forget, and feel good, but no matter what, when you feel bad it is your first thought - for me anyway. And if I had to make a guess, I'd say it was lurking in me somewhere now and they won't find it yet until it's a nice specimen, a/k/a I'm at death's door. Early detection is great, if we could get the medico's on board with it!
Sorry if I upset anyone, that is my rant of pent up frustration for the day
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It is stupid and especially for you girls with the recons. I get a mammo every 6 mo, year, whatever, but they ALWAYS see something, and are forever biopsying away, I have more holes than swiss cheese. And NOW 3+ years later, after feeling various lumps and bumps, they tell me mri and mammo CANNOT see through scar tissue anyway, so what is the point? If you feel like crap, get a scan, but none of them are worth anything or the doctors don't act on them, in my opinion. One place I was going to just gave me the feel good results, but if I push hard enough because I feel like crap and get something done somewhere else, they find it. After pulling every recurrant calc out of me last year, I have more this year, but they want to watch it. Really? And after a recent bone scan where my sternum lit up they are going to watch that too...I think they forget that cancer does not go away, it is not ever cured, it goes into remission, that's it. Sometimes it stays in remission forever for the lucky ones. Most of the time it is in the lymph nodes and so on to the bloodstream...by the time they find it again it's really distant, but if they pay attention at all it's to the breast area where it started. A body scan every year might help, but I don't think insurance companies would cover it. Time goes by and you forget, and feel good, but no matter what, when you feel bad it is your first thought - for me anyway. And if I had to make a guess, I'd say it was lurking in me somewhere now and they won't find it yet until it's a nice specimen, a/k/a I'm at death's door. Early detection is great, if we could get the medico's on board with it!
Sorry if I upset anyone, that is my rant of pent up frustration for the day
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It is so nice not to feel alone in my frustration is disappointment with the medical community. I really thought for the most part everyone else was fine with their follow up care. Thank you for speaking up and making me feel like I am not crazy or ungrateful...
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I am almost half way through rads, so I was surprised when they gave me an appointment for November to see the surgeon again and a mammogram. I'll admit i feel a little lost as well. I am going to insist on an MRI when I go because they did not pick up most of my DCIS on mammogram (They told me it was probably there for 2 years!).
37antiques: You're right! Kenmore is a first ring suburb of Buffalo! We also have a case of colon cancer and testicular cancer on my block along with any other cancers that people don't talk about. Not good..We have a pretty good filter on our kitchen faucet, so I've been drinking nice, clean water for a couple of years. I think it is the groundwater in our basements. We aren't too far from from nasty coke plants.
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mom2one: We have similar diagnosises, except I am triple negative. Mine was found on mammogram (0.5 mm area of calcifications) and a 4 cm. area of enhancement on MRI. When I had my first lumpectomy they found a 3 mm. invasive tumor, which is slightly bigger than a microinvasion (<2 mm). I have had three opinions, one from a large cancer institute here in Buffalo, whom I decided to stay with, had my re-excision there (which was completely clear of abnormal cells! yippee!), and am undergoing rads right now. I'm not sure exactly how big the area of DCIS that I had was, but when reading my path report, it looks like maybe 1/2 the slides had DCIS. So I am figuring I had about 2-3 cm. total. They took out an enormous chunk of my breast out, but looks fine so far. It has filled up with fluid nicely. I was told, and this is for triple negative, that chemo does not start until 6mm. and at this point it is "considered", not "suggested". It isn't "suggested" until 1 cm. So what they are telling you about chemo sounds right, but I'm not sure about Herceptin. You might want to look into that. I know if my tumor had been estrogen positive, then they would have put me on tamoxifen. Since you have had a BMX, they really can't do a mammogram, so feeling a lump would be the way to tell if you have a recurrence. It should be pretty obvious I would think. You could always see about an MRI.
BTW, three weeks seems like an awfully long time to wait for them decide about the path results. When I went to the cancer institute, they actually were running around, checking with all the doctors there about chemo for me on the spot. I knew right away what I was up against and they looked at my films and slides BEFORE I showed up and they redid the pathology with their own pathologist there. They don't trust other labs because they do only breast cancer there and are the specialists. My best advice to you would be to seek multiple opinions until you feel comfortable with someone you have talked to, then go with it. That's what I did and feel as comfortable as a breast cancer survivor can, which isn't a whole lot, but that's life I guess!
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I had one more thing to bring up. I had a Mirena IUD inserted in August. My breasts never felt normal after that, so when my mammogram showed an abnormality in december I was not surprised. I had the thing removed on the spot as soon as I found out my biopsy results. I go to look into the drug information packet, and it says in there that women with breast cancer should not use the Mirena IUD. Well, my question for them is, "How the hell does a woman know when she has breast cancer??" Would like to get a class action law suit together but don't have a clue how...
UGGGH! I could kill these pharma companies!!!
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So AGAIN today, I asked my MO about follow up and he said same thing as before about symptons... I then said so if I have a headache how am I not to think I have scalp mets... He said it needs to be an unusual and long lasting pain... AND that I will continue to have blood tests, like the CEA... my score today was .09 where anything under 5 is normal... He said many cancer patients are happier while under the care of the MO and feel they are being watched and have a lot of trouble post treatment... I agree and said I feel he is like my umbrella... there to protect me is I am caught out in the rain.
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I am still in treatment, 7 of 33 rads done today. My last visit with my oncologist was the same day I met with my RO for the first time. They are in the same treatment center and she planned my appointment that way. After I saw him I re-checked in to see her. She hugs me every time I see her, and just that makes me feel better. She asked how my RO appointment went, if I had questions etc. She told me she wants to see me May 27, which would be about three months after chemo ended and will start blood tests every three months after that. She said the recurrences she finds usually start with the tumor markers. I have yet to research what that means or ask her, since I really don't want to think about just yet. I truly believe that she will fight my insurance for any tests she thinks are required. I am lucky to have been directed to such a caring medical professional. I know others who are numb....
Unfortunately I think a lot of the care we receive or don't is dictated by the insurance we carry, or don't. Life seems to be measured by our ability to pay, and by how things are "coded" from the medical profession. We are just pawns in the game of bill, negotiate amounts, and get paid. My arm sleeve that was custom made for me - the place I got it from coded it "rental medical equipment". I don't think they want it back, and trust me, I'll be making sure they don't bill my insurance each month for a rental!
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I am just as frustrated with my onc about the whole monitoring process. I see him next week for my 3 month follow up and will ask for a PET scan to ease my mind. Right now every time I feel something "odd" for more than a day or 2 my brain jumps to the ugly scary place and I can't handle it. I need to know that there is nothing going on. When I asked about how he plans on monitoring me his responce was similar to all of your dr's, the wait and see approach. I understand his hesitation in running scans too often, but if it eases my mind, I think it should be done.
I ran into an old HS friend at the super market yesterday and she asked in a very hushed voice, "do you have cancer?" Yes, I have the buzz cut going with my hair which is not something I would have done under normal circumstances, but is it that obvious? In our conversation she said she and some of our other facebook friends have had conversations wondering what was "wrong" with me since there were so many posts on my wall asking how I was feeling. It just seems odd to have my health as a topic of conversation. It made me feel very strange and I can't really put it into words.
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Hi all! Today was a good chemo day goes as far as the SE. I have 1 more to go. Doing the happy dance, woot woot. Happy Friday all!!!!! HAve lots of beers for me!
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I can't stand the idea of hushed conversations.. When I was first diagnosed and told my boss, I asked him to email my collegues... his initial email was so vague... then when people saw me I got strange looks like "I thought you were out sick for a while" so I asked him to re-email and just say I have cancer... otherwise i would find myself repeating myself with my story... way too exhausting. I work in a school and the middle division all knows and I feel so much more comfortable.. In the upper division , most don't know and I have had some weird conversations, like a co-worker who said he was going out shopping for our other collegue to help her during her chemo... cause she's so tired... I then just said, I'm in chemo too so I know what you mean... AWKWARD...
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