TRIPLE POSITIVE GROUP
Comments
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Yay Leanne!
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That's fantastic news Leanne.
For anyone who is interested - my irregular bleeding is back. Since it has returned and we aren't sure if it is just an erratic period, I will have to have a d&c to have all the tissue examined and rule out endometrial cancer. This risk of this is very low since I had a benign endometrial biopsy last summer, but my gyn says she thinks it is time to do a full check and get peace of mind for both of us. Can't have this done until late January...wish I could have gotten it over sooner but oh well.
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Dancetrance , I was just told I need a d&c to and for the same reason's as you. Go figure just when you think doctor appointments are done.... Good luck with yours I don't know when mine is yet the hospital has to call me on that yet.
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Happy to hear all the good news here and not so happy about the not so good news.
Some good news here is that I had my last 4 month appointment with my oncologist and now go to 6 months and I am about to celebrate 3 years NED. My oncologist is so happy with all my blood work and says to keep doing whatever it is I'm doing (running I'd say). She say's I'll stay on the Arimidex for 5 years (just passed two) and then go on the Tamoxifen for 5 years....we'll see what all the studies say when I get to that point. I will continue with the 6 month appointments until I get to 5 years and then only yearly. She's the sweetest thing...always hugs and a kiss on the cheek and good wishes. Always makes me teary!
Take care all! I don't get here as often as I'd like lately but I do pop in occasionally and try to catch up with everyone and read the studies that everyone posts.
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Arlene,
That's great news! I've a friend who's 6 years out from stage 1. she makes me laugh. She's says she won't be happy until her file is right on the bottom, gathering dust! May your file join hers with the dust bunnies 😉
Nicky
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Nicky. Keep healing from the knee stuff. And good luck with MRI
Le Anne Who whhoooo! Congrats.
Arlene 3 years Ned!!! Yay!
Anne and Dancetrance, hope the D&Cs go well.
To all, Much Love.
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I haven't been posting lately, but I have been reading. I wanted to chime and in say:
YAY Leanne! What a great feeling to know that the tumor responded so well as per MRI, hopefully they don't find a darn thing at surgery time!
Nicky ~ I am thinking of you today and saying a prayer that the neck issues are due to something like arthritis. Keep us posted.
Dance and Ang ~ I will be thinking of you as you undergo your unpleasant procedures. Hopefully they will give you the peace of mind that you deserve!
I hope everyone else is doing well and is better prepared than I am for Christmas, haha!
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Leanne, remember hubby is probably scared and doesn't know how to deal. So blow him off (for now) remember he loves you, and just celebrate in style! That Perjeta is amazing and you've just proved it!
Nicky, ask your MO how much of a percent change he/she sees in your tumor markers. They are not always so accurate because they are non-specific for breast cancer, so see if you can get more info (and if you want, let me know). And keep us posted on the MRI. I will say some prayers, but bet you are fine.
Bren, you look beautiful! As my Ma would say "you have the map of Ireland all over your face!" She used to say that to me as a kid and I would get so confused. But again, you look so pretty!
Congrats Arlene and may you definitely end up in the dusty medical archives ;-)
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thanks everyones for thinking of me!
Pbrain, my markers are up 30% in 12 weeks.
Had my MRI - no progression, but 2 more herniated discs. That makes 3 between T 2 and T7. I was waiting to leave the results with my onco's secretary when he walked down the corridor himself. He looked at the MRI and said that that was enough, it's time to operate, so today I'm waiting for him to ring me with an appointment to see the surgeon.
He did say I'll be having a pet scan in early January to find out if there's progression anywhere else (the MRI was just cervical) but with Christmas being next week we can wait til then.
I knew that some day it would be necessary to do something with my neck and back; I just didn't think it would be this soon! It would be nice to not have the pain though......
Nicky
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Ladies, i have this question in my head for a while. My BS only took out 2 sentinel lymph nodes. she didnt remove any axillary lymph nodes). my pathology report results all negative. why some of you ladies had ALND done, some aren't? after the surgery i asked my MO if I should have my BS removed my ALND, he said NO. Girlstrong, i kno you kind a explain to me about this but i still question it.
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soriya, if your pathology was negative, then I believe your doctor is right and there is so need to do an ALND. ALND is only used if there is lymph node involvement, and there is a recent move towards not doing it unless it is absolutely necessary, and having chemo and rads instead. Be thankful that you did not need to have it done because it comes with a whole host of risks and SE's, a big one is the lifelong risk of lymphedema.
Maybe someone will explain it better.
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soriya123 if your sentinel node(s) are negative there is no need to remove more nodes. In the past if a woman had a tumor more than 5cm (like me) they automatically removed the first level instead of doing a SNB. This is why I had 10 nodes removed from the left even though I had no cancer in them. That was 2010. Now they don't do that. If they find cancer many do radiation instead of just removed the nodes. Some do both. Also there is a situation (a friend of mine) were she had a breast reduction years prior to being diagnosed. This might make it difficult to find the sentinel nodes so she too had level I out but ended up having no disease in them.
At least that is my understanding. You can check with your BS and Onc to see if my understanding is correct.
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NickyJ: herniated discs are a welcomed diagnoses vs. the alternatives. I am glad that your MRI went OK. You can definitly heal from c-spine surgery. Hopefully you don't have any upper extremity involvement with neuropathy. Your in my prayers.Bren58: absolutley love your new pic. I think your hair looks great. You know, in Hollywood, the new trent is short pixie hair. Think Pamela Anderson, Jennifer Anniston, Beyonce, etc.
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Girlstrong,
You're absolutely right! As one of the nurses in the chemo room said "any dx is better than the house speciality!" Made me laugh!
Nicky
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Lucas
My decision was based on the fact I had a couple of very small satellite tumors, Grade 3, HER2+++, 2 positive lymph nodes and all this after a clear mammogram a year prior. I decided since this was such an aggressive cancer I was going to go at it just as aggressively. I feel good about my decision and like the girls that have answered previously, its a very personal decision.
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Nicky, "the house specialty", that's great. I had never heard that one before. Glad it was not that for your discs.
Thanks, Pbrain & girlstrong. Short is very popular on this board
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Bren you always look good
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Bren, you look great!
Nicky
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Bren
You do Look great. In fact everyone looks great actually.
Nicky j
Specialty of the house... That really is a poetic way of putting it. Poetic but the pain of a herniated disc isn't ! Always told peopl that as bad as chemo was at least I had no pain. Chronic pain i is so difficult to bear .Hope the plan works to relieve you of the pain!
Soriya
I think Bren & Lago explained the ALN D well.
I too only had 2 sentinel nodes biopsied. They were negative so no further dissection or rads .
My BS differs from most others in that he did the sentinel node biopsy within a week of diagnosis at the same time my port was inserted and PRIOR TO chemo.
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Nicky ~ Great news about NO PROGRESSION in the cervical region! Really sorry to hear about the pain and the looming surgery though, I sure wish you didn't have to go through any of that!
Bren ~ I will be THRILLED when my hair is as long as yours! I am currently rocking a super short/ fine GREY buzz cut look and I am flippin' 35!! GREY HAIR!
Soriya ~ I had ALND because I had 2 "known" nodes prior to surgery and we could still see them on US after neo chemo. I sure wish they had only taken those 2 nodes or maybe a couple more! I freak out about the possibility of lymphedema every.single.day!
I am having a "down" day today, so I need to go get on the treadmill and work up some endorphins. Sigh.
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TwinMamaHeather I know one gal who had 25 nodes removed and rads and no LE. In my case I have a family history (mom has it in her legs as did her uncle).
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TwinMamaHeather,
I have no node involvement, had no operations, and still ended up with LE in all the left side (cancer side). Go figure.
Nicky
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I know the lymphedema thing is kind of a crap shoot and they don't really understand it {as proven by the two very different cases with VERY different outcomes stated directly above!} but that only makes me more obsessed with checking for it! Every time one of my boys bumps into my arm or something I am like, "ohhhh noooo....". Yes, I realize I am a bit neurotic. :~)
Just to clarify, I wasn't "down" about the lymphedema thing today, just thinking about this disease in general and how stupid and sucky it is. I hate that it takes some of the most awesome people from this world.
Just got off of the treadmill and feel a bit uplifted. I am so happy I got cleared to run.0 -
My BS told me that whether or not you will get lymphaedema is genetic and also that none of her patients have ever developed it. She must be one hellava surgeon. I had 20 nodes removed and so far no signs of it.
I am getting fond of my short, dark hair and intend to keep it. No more blonding and no more curling iron use. I intend to remain free of all my past hair madness. My hubby loves the new look and so do my friends
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My surgeon told a friend of mine (we have the same BS) that his patients don't get LE. I told her to ask him about me because he knows I have it but…
Mine is not that bad. I wear my sleeve and have no issues. I don't wear a glove because my hand doesn't swell (per my LE MD recommendation).
Exercise is the best thing you can do for LE and prevention. Do not over due it but getting the fluids moving is great. When you start exercising go slowly and work up. I personally believe it was the chemo that pushed me into the LE. Why? because I retained fluid on chemo… I would gain 4-6 lbs once I got of the steroids in fluid. would drop it once I started the steroids again. All that extra fluid 5 weeks post surgery wasn't good. Lymph vessels were still healing. But that's just my opinion.
I too was scared shittless of LE. Now that I have it and know how to care for it, at least for me it's not that bad. You just need to catch it early. Granted not everyone is as lucky as me but I do believe that exercise and wearing my sleeve daily has prevented me from having issues. (Of course no sticks or BP in that arm as well).
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Twinmama, I totally understand your obsession about whether you will get lymphedema, because I do it too. I had a total of 30 nodes taken out. The first six months were the worst. Then I calmed down about it a little, but I am still concerned about developing it. Every day.
honey, you look great in your short dark hair. It's amazing that most of us would never have tried the shorter styles or colors that chemo gave us, but now that we have them we kind of like them. At least for now. I am still trying to figure out how and what to do with mine.
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Thank you ladies, i feel better now. My husband told me i need to trust my BS, i kno she has good reputation but still....u kno what i mean. anI i am 2 weeks post-op, i drove today, picked up my kids from school cus of heavy rain. i am still sore, sharp pain a little here n there. i can't wait untill i feel normal again...so i can jog n run again. *** Bren, I love your new look. my hair seems to take forever to grow
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U ladies look wonderful with u'r short hair, I love it. My hair is to long and I have to have it cut. haha it's still short but to long NOW for me to deal with. LOL My DD is going to cut and foil it this week-end, I'm getting tired of the all gray look, even tho I chalk it sometimes, silly me--I'll give the foil a chance and have my gray like a highlight. We'll see
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All the new pics/avatars look BEAUTIFUL......they make me smi I e
Been reading a lot but not posting much...i just feel out of sorts lately!
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