A place to greet and meet newbies to stage III
Comments
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Robin, wonderful to hear that so far things are going well...you need to add ice cream to your menu. I have been on a nightly dose, I lost so much weight when I was first dx, stress, and then the A/C was torture, so I forced myself to eat ice cream...soon I will need to break that habit...0 -
Hi all,
I am trying to understand my diagnosis a bit more, and noticed that many of those with stage III cancer are ER/PR + and Hers2- which surprsises me. I understand that this is typically a less aggressive diagnosis (from a grade perspective) so I would think with faster growing tumors there would be more triple negatives and Hers2 + in this forum. If any of you have any thoughts on this, I would be very interested.
Also, I was diagnosed with Cribriform Breast cancer which, as I understand it, seldom metasizes to the lymph nodes. If anyone also has this kind of stage III cancer I'd be interested what your Oncologists are saying about reoccurrences. The literature I have seen is mixed.0 -
Hi jab
In my case, it was a perfect storm of bad luck, and a lack of education/awareness/vigilance in my health care providers, and in myself.
I had "extremely dense" breasts, and my cancer type is the difficult-to-detect lobular.
I had regular mammograms for the past few years, and always got the congratulatory post card saying everything was fine.
I developed a "thickened" area --- saw it in the shower, a sort of bulge to the left -- -back in January, but neither mammo nor ultrasound showed much, if anything, so they put me on the "come back in 6 months list." I could feel it. It was very obviously THERE - the mammo tech felt it and said "It feels like a little tennis ball in there, doesn't it?!" She also noted that it had made my left breast seem smaller than my right one. But.... nope, nothing suspicious here. Come back in 6 months!
It finally did show up on MRI. Very clearly. 6 months later.
So yeah. I made it to stage III because no one *told me* what having extremely dense breasts actually MEANT, in terms of making cancer more difficult to detect, nor in terms of how that factor raised my risk of breast cancer in and of itself. I am.... a little bitter, and a little angry, to be honest. Getting my BMX and IIIc diagnosis in pink-all-over-the-place October made it that much worse.
I feel like the system let me down by leading me to believe that having the mammogram regularly was all I needed to do. It let me down by not saying "Hey! You should maybe get an MRI every now and again to be sure." It let me down by not making sure that the mammogram and ultrasound techs were better informed and educated about lobular breast cancer, because once I KNEW what I had, and looked up the signs, it was pretty obvious. Honestly, had I known as much about ILC as I did IDC I could have diagnosed it myself.
But...thank God I did decide to visit a different doctor for that 6 month "follow-up", and thank God that he sent me immediately---and by immediately I mean the very next day--to a surgeon who DID know a thing or two about ILC. Thank God that so far all my scans and bloodwork seem to indicate that it hasn't spread.
But yeah, still bitter and still angry. I desperately want there to be more awareness about dense breasts and what women can do to make sure their cancer isn't missed like mine was. I desperately want there to be more awareness about ILC and how it can, and does, present in an entirely different way from IDC.
Realistically I know that the whole pinktober thing really has saved a lot of lives, and enabled a lot of breast cancers to be found earlier than they would have otherwise.
But it's not enough. It won't be enough until what happened to me is something that never happens to another woman.
I did tell my oncologist last week about that whole experience, and said "I WISH I had gone to a different doctor in the first place, when I first found it in January," and he said "Don't go there. This has been in your breast, and your nodes, for much, much longer than that. The diagnosis would have been the same." Strangely, that did make me feel better---I had made the best choices I could have made, armed with the information that I had.
It just wasn't enough information.
So there's one answer for you. I won't be surprised if there are other, similar, answers, but I will be sad about them.0 -
Greetings - I'm catching up on posts this evening and hope those of you having chemo are having minimal SEs and those of you recovering from surgery are healing well.
I'm very new to this group, although not to the site - I joined a group in January of this year when I started chemo. I'm in a clinical trial and will continue tx (Herceptin) until mid-March. Good grief, my memory is not so great some days and I wonder if I've already posted all of this information!!
jab - Love the quote - what/where/who is it from?
lisa137 - You make many excellent points as far as the lack of information about dense breasts as well as ILC.
I've been very faithful about getting yearly mammograms, but skipped 2011. And wouldn't you know, last fall there I was with stage IIa after a repeat mammogram - the radiologist was 99% sure even before the biopsy. (The surgical path report revealed IIIa.) My oncologist, when I expressed my regret about skipping the mammo, also said, 'Don't go there' - and urged me to look forward. The breast surgeon said that the cells were fast growing and the tumor may not have been visible in 2011. I don't look back too often anymore, but it's taken this whole year to get to that place.
I had a stereotactic biopsy of a suspicious area in the same breast seven years ago, in a different city, and am trying to retrieve those records to find out if I was properly informed about that biopsy - perhaps there were some atypical cells. I recall being told that everything was fine - nothing to worry about. Hmmm ....
Wishing everyone a restful sleep -0 -
Dense breasts here also. My last mammo was "normal" yet here I am not even a full year later Stage III. 9 nodes involved, mixed bag of mostly ILC and a little IDC just for a twist. I found mine, but also wonder how long it was missed. Annual exams should be geared toward the individual. All breasts are not equal and while mammos do save lives, they miss a lot for those of us who are dense or fibrocystic. Why aren't US or MRI used for those who don't mammo well?0 -
Same here. Felt lumps had mammo and was not picked up..Then had u/s and the found 2 lumps...breast MRI 3 weeks later 1 had doubled. I too have very, very dense breasts even at 49. Dr. said I would never have found small lumps on my own..My lumps were 3 and 1.5 cm on u/s0 -
Yep. Same age, even. I'm also 49.0 -
This is a wow..I am also 49 years old.0 -
Same here, i was 38 when i found the lump, mamo and US send me home to wait 6 months, i knew something was wrong and i took 4 months to end up stage IIIa,
also i am 40 now. I feel those past few years were stolen from me and now another maybe 10 dumped on me, since due to Chemo my body is having menopause. What else can I say just hope this does not continue to happen to other dense breast tissue ladies. 0 -
There is a website www.areyoudense.org where there are too many similar stories. You can post your story there too and help get the word out.
I fell victim too! "it's just dense tissue, come back in a year.". Still kicking my own butt for not being pushy, but time flies and life goes fast and before I knew it the year was almost up. And now.......here I am. Would have been here anyhow, but what to cancer gain and I lose in that year?0 -
4Sewwhat thanks i will definitely go to that site.
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well I just wrote a big post and lost it. Add me in to Dx at 50 with ILC 31/2 cm, grade 1slow growing, 15/15 positive nodes with more positive on Pet scan, dense breasts and no family history and clean mammo in 2011.
Lisa, you don't mention Tx but I am guessing by your Dx you will be getting 4 A/C treatments and then 12 Taxol or Taxotere?
Shary0 -
Yep, that is to be my treatment, starting Monday, followed by I think 6 weeks of radiation. Not really how I'd planned on spending the next phase of my life, but it is what it is.
The areyoudense website is great, and I plan to share it to my facebook age at least once a month until at least everyone *I* know is AWARE, and hopefully they will share it as well. This is a big deal: women need to KNOW. If we had known, we might not be responding to this thread in this particular forum right now.0 -
Lisa, you are absolutely right and I will go to that link and share on my FB page too, I have a second page named "Things near and dear" and I share a lot of things regarding BC awareness if anyone wants to take a look at it, it is fun and gives me something to do. I also have to have 6 weeks of rads probably starting about next April and then hopefully start my reconstruction. I figure from the time all this stared until I finally get my exchange will probably 2 years out of my life, so yea this "is" what it is. Hang in there and don't hesitate to ask any questions about A/C I finished that on 10/10/13 and now awaiting my 3rd Taxotere. A/C is rough but you can do it and I am always happy to help in any way I can.
Shary0 -
4sewwhat- thank you for that link!
Ladies, we all are thinking alike, lol! Submitted my story on the page and posted the link to the page on my FB profile!
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gavinsgrandma: Thank you. I'm sorry you (or any of us) are going through any of this, but it does help a LOT when people tell me "been there, done that, you can do it too," because it helps me to believe that yes, I can. I think--I hope--that I'm as ready as I can be for the A/C ordeal, because ready or not, here it comes. :P0 -
wow 49 is a popular age..diagnosis in April..6 months chemo now rads..only stage 3a and after chemo tumors gone if you feel the breastsso great news.
What does everyone do for a job..wonder if we all do the same thing too?0 -
Rock on ladies and keep spreading the word. When I dot diagnosed, finally, I told anyone that would listen! My goal is to save anyone I can from following down this road behind me.
Lisa, good luck starting chemo. It is not as bad as your imagination tells you it is going to be!
Best wishes to the rest of you as you continue with whatever area of the trenches you are in!0 -
I don't blog, too lazy to start another page to follow....I have been writing letters/notes, on my facebook page. They are set to public, and I have been very upfront and open about BC with everyone that sees my posts. I have an odd sense of humor, and many people may mistake that as minimizing what I am dealing with. I know I am in a battle for my life and will be continuing to fight this forever. I, however, have chosen to not lose the part of me that I love and know the best, my sense of humor/self. Cancer may take away pieces of my body, but it cannot take away the essence of who I am. Everyday is not a picnic or roses, and I know I am still at the beginning of my journey. I also know I have many people here to help pull me along when I need it. I also have those following me on FB to help and that keeps me grounded.
Former teaching assistant here.....
Here is a link to my notes.... Notes0 -
Hi,
Has anyone been successful in reducing the swelling that comes from chemo?0 -
Hi Hvv, i gained around 10 to 15 lb wile been on Chemo and i knew it was all swelling cuz my face was all round and my arms it just didnt look natural. For me what worked best was eating carbs in the morning before 9 am and Protein at lunch with Vegetables, then fruits and salads at dinners. in about 3 to 4 months i was 15 lbs lighter and back to looking like the old me
I read a book that is called not another diet, which talks about eating all you want but at different times of the day to which we are used to. Its all made sense. All it was is to switch carbs to early during the day. It worked for me, it also helped me with a digesting problem chemo gave me. I was baldly bloated and once i switch my meals around it slowly got better. I am not saying this is the best way just sharing what worked for me. 0 -
HVV, I managed to keep some of it at bay by eating as many anti-inflammatory foods as I could. I ate sardines and mussels, onions and cabbages, chilis and nuts and loads of veggies. I also made sure to go for a walk every day. Sometimes it was a slow, agonizing shuffle around the block, but most days I managed a decent walk and if I felt well, I kept walking, sometimes covering 4-5 miles.0 -
Hi ladies. I also had dense breasts and had gotten yearly letters saying everything was ok after my mammograms. After my diagnosis I asked for my records and it turned out they had been "watching" a small lump and calcifications for several years. My oncologist said my cancer had been there for 9 years. After that I told everyone I came in contact with to get the full report, not just the letter saying everything is ok. I too was angry and some said I should sue. At the time I felt it more important to get through surgeries and treatment and have a positive attitude. So that is how I went in fighting for a stage IIIc, grade 3, ER+/PR+, HER2+.. So far everything has worked well, I just have bad side effects from the chemo, then the arimidex and now the tamoxifen. It's hard to remain positive and after two years I have found myself slipping back into a depression. I also have fibromyalgia and my doctor says that is the cause of all my pain - that it is not the cancer. It's so hard not to worry that it has come back.
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MMac sorry to hear what you are dealing with, sending hugs and positive thoughts your way .
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This is very interesting. I too have dense breasts. Similar story as many of you. 3 Mammograms and two ultrasounds in one year on my right side as I had multiple lumps. They came back negative but they were large and I wanted them removed, so I asked for an MRI when visiting my surgeon pre surgery and it showed cancer on my left side - I didn't feel it, and I was paplating almost daily. My surgeon said I didnt qualify for and MRI but gave it to me anyway (thanks God!!!). I am also 49!!
Does anyone know of links thay discuss stage III ER+ PR+ node positive reoccurance? I have looked everywhere on the net and cant find anything of substance.
Thanks areyoudense.org I'll check it out. I start Chemo on Thursday.
JAB0 -
Hi ladies, I hope everyone has had a good Saturday so far and for those dealing with this weeks SE'S I wish you peace and comfort. I got my Neupogen shot yesterday here locally after all week of trying to get Ins to approve it here rather than at MO office 3 hours away, prob won't get Taxotere #3 until the week after Thanksgiving which actually will put me 3 weeks behind but what are you gonna do? I am making some Beef Stew today for dinner and I just got done searing the meat, smells soooooo good. I was reading about the swelling and weight gain, I lost about 20 Pds between Dx, surgery and A/C, with A/C I could hardly eat for whole time but now that I am on Taxotere and more steroids, I see some weight coming back on and I fear I will get puffy. I cannot really taste much but that does not seem to stop me from eating😛 Retired Hairstylist of 25 years here.
Shary0 -
P.S the bald hairdo is defiantly an easy one0 -
Hi everyone,
I'm glad I found this place.
Oceana
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Oceana, thanks for joining us. Not the place one dreams of being, but supportive all the same!
GavinsGrandma: Love the photo! You are rocking the bald!
Still need to hurry up and get in my "shorty" cut! I don't want to look down in the shower and wonder where the hair slippers came from. Or to clog any drains....0 -
Happy Holiday everyone 😄
Shary0
