CALLING ALL STAGE I SISTERS
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Thank you for responding.
Belinda: Yes, my oncologist ordered the Oncotype DX. We're awaiting the results, which will be another week or so.
NormaJean: My HER2 status was equivocal (uncertain) on the first test and also equivocal on the FISH followup. I think my actual score was around 2.1.
My Ki67 was very high, at 75%, so I'm worried that the Oncotype will come back high as well.
Melinda
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megonzal, both my surgeon & my onc were talking about rads only. I asked about chemo & they both said nah-you don't need it. Then my onco score was 42. I had T/C, 4 treatments, 3 weeks apart, 36 rounds of radition & I take the AI Femara. You do what ya gotta do.
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Eph3_12...........you are exactly correct. I don't think anyone wants chemo but when the circumstances take you on that journey you go. Personally, I went kicking all the way until I realized it was too late to do anything but go forward !!
megonzal.......don't cross the bridges until you get there. If your instincts tell you to get a second opinion, then do just that. Best of Luck.
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Thank you for your comments. You're all helping me learn so much!
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Hi Stage 1-ers! May I join you?
I did nearly five years of tamox the first time around. My MO wants me to take it again but I've declined. I suggested to her that maybe I'm one of those women that doesn't metabolize it well and her response was "just because you don't metabolize it well doesn't mean it isn't effective." Huh? Anyway, I'm one of the VERY few that had just about every side effect listed and they continued even after I changed to an AI. When my granddaughter said to me, "I'd rather see you go through chemo than take that drug again," it really hit me how much my personality changed while I was on it. My MO finally conceded that quality of life issues should be taken into consideration and sort of supports my decision.
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Welcome Susan! There's a test to see if you metabolize Tami. Did she run it? It would really be awful to have all the SE's and only 10% of the benefit. You might get as much benefit with dietary changes. Did she suggest rads? Or maybe you had them with the lump. I agree that quality is very important and I would drop my AI like a rock if I had horrible SE's.
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Thanks, Wren. She didn't run the test. She said even if it came out that I didn't metabolize it well, it didn't mean I wouldn't see a benefit from it. No rads either time. Although my margins were very close (one at 0.25mm, one at 0.5mm), she believes a margin of one cell is enough. I had the MammaPrint test which indicated a low chance of recurrence, and really, I'm not that concerned about recurrence. Its a new primary that I try very hard not to worry about. My bc this time consisted of two new primaries, both in different quadrants than the first time - one DCIS with a different signature and one IDC. My prophy breast was filled with ADH. Ack. I really want/need to get beyond the "other shoe's going to drop" stage. It took a couple of years the first time.
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I can certainly see why 'whack them both off' was a good decision. But to find the prophy full of questionable stuff must have been really scary. I think we all share that feeling - once you cross the Mafia, you never feel completely safe again. (((Hugs))) Enjoy time with that granddaughter.
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Hi, ladies-
Well, I found the amazing breastcancer.org website when I was diagnosed exactly 1 month and 1 day ago from today. I honestly do not know what I would have done without this support forum; it has been a Godsend for me. Even though this officially marks my first post, I have been on the site navigating around multiple times a day, everyday since May 24, 2013, the day the changed my life forever. I find myself Triple Positive. I had my bi-lateral mastectomy one week ago and will be going in for a re-excision to get cleaner margins tomorrow morning at 9:00 AM.
As my username states, I am 32 years old. I am a middle school English teacher, wife (been married 8 years to a wonderful man) and mom to two little girls , ages 6 and 4. If cancer had to come into my life, I wish it would have come when I was 42, 52, or 62, when my girls were older, but I plan to treat this cancer aggressively and beat the crap out of this disease.
I am looking forward to connecting with others who find themselves on this incredible journey; I will be here every step of the way.0 -
Hello out there and Welcome to all the new ladies! Glad to know all of you. Hope you all are finding answers to questions and nice ladies here to help you. Frankly I hope my Med Onco doesn't place me on the 10 yr. Tamoxifen train. I'm just hoping right now I can make it another 1 1/2 yrs. My poor hair is in terrible shape after almost a yr on Arimidex and a yr on 20mg of Tamoxifen. It fell out in droves, it's frizzy and has the funniest feeling texture to it. Very hard to describe. I'm still taking Biotin everyday, it has thickened some. My poor knees creak terribly still and I still occassionally get awful aches in random joints but nothing like I did before and I can at least get up out of bed without my feet hurting. Tamoxifen 10mg daily is all I can tolerate. It's what I took for a year before the Med onco upped my dosage and I had bad side effects (knee and foot pain) and it's what I'll be on till I stop taking it. Add to that the fact that it makes my head itch incessitantly and my side effects are not unliveable. They simply are crazy ones. I just make do . To simply think I had 6 1/2 more yrs to go I think I would go nuts. LOL to those of you that do... Bless you all and may you be symptom free.
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Hi DXat32. Welcome. Glad we have been able to be of help already. BCO is a great place. I found it after I had surgery but before I started chemo back in '09. It was been a help, a comfort, a place to grieve, a place to laugh EXTREMELY hard. I've met a couple women in person, and I've met lots of women I WISH I could meet in person. I've lost several close cyber friends to this damn disease & even 4 years out, I check almost every day on about 10 threads or so that are my favs.
Good luck on the margins tomorrow.
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Oh Wren44 you are sooo correct about the mafia. Never heard it put that way before but really made me laugh.
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DXat 32 glad you found us here. BCO has really been a help to me as I know it has for others too. Feel free to ask questions as someone has been there before or if you need to vent we all understand.
I go for my 6 month MO appt tomorrow and get my Zometa infusion. Trying to drink lots of water.
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DX, glad you found this site, I am farily new to this bc site but it has really been a Godsend for me. I feel I have so much good info right here and it is also a great therapy tool as well, talking to ladies that have been thru this before me is the best. I agree.. wish you never had to have it but 32 is just way to young to have to deal with it, but on the other hand you ARE young and give it the real kick to destroy it! God bless you on your journey.
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Had my 6 month MO appt last week and everything was great. All my blookwork came back good. I got my Zometa infusion and was on my way. This was the first time I had waited 6 months, I had been on the 3 month schedule. I know alot of people get scarred when they move further out with their appts, but for me it was liberating. I felt like I actually had time to breath and I was not at all nervous about waiting. Also since my BMX I don't have to have scans any longer and that also has helped relieve my anxiety. I don't go back again until Dec, woohoo
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Congrats Sherry.....
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hey ev1. i am 45 and just had my second child 9 months ago.. when he was 5 months i was diagnosed with multifocal rt idc... i was and still am devastated... i had my double mastectomy in april... a pet scan was done and showed suspicion for endometrial cancer and vocal cord cancer... after seeing specialist and having biopsy i was told i didnt have either but since we got the scare my oncologist said lets get the uterus out since i would be doing tamoxifen treatment.. my cancer was stage 1 grade 2 0/5 nodes.... i have pains everyday in my right side under my breast for which ive had for 5 yrs now and a sudden shortness of breath that feels like it comes from the top of my stomach... i cant seem to convince myself this is not cancer even though i had a pet scan... i cry every day and im terrified at my future and wondering will i be around to raise my son.... would like someone with a similar profile to help me and give me encouragement and what i can expect.... thanks
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There's something called a hiatel hernia (not sure of spelling) which could cause those symptoms. There are remedies and sometimes people need surgery (my Mom did). Doesn't have a thing to do with cancer. Stage 1, grade 2, 0/5 nodes sounds pretty favorable to me. I'll bet a big part of your crying is hormone based. Between having a baby and using tamoxifen your hormones must be crazy. Talking to a counselor who specializes in cancer patients would be helpful. Do let your onc know how you're feeling. I think you'll be around to babysit grandchildren. (((((HUGS)))))
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Hi
Just wanted to echo Wren's words, don't panic, try to stay calm... And agree the combo of childbirth and tamox would be a hormonal overload....
Had/have similar diagnosis to you...
Trying not to over think everything (not easy I know), and to keep some hold on perspective and reality... Counselling does help...
Also, Wren your mafia comment gave me a laugh too... Soooo true.....x0 -
Hi eve, I echo Wren's sentiment's. As a nurse and a BC survivor with a smiliar dx to yours as well, child birth and Tamoxifen will drive your hormones into overload. You may need some kind of antidepressant to help you along for a short while. Talk to your Med Oncologist and your primary physician they can be of great help to you. The med onco can prescribe other meds if you need them other than the tamox, well... at least mine has. Your body has definitely been through a lot of changes. I hope and pray all works out well for you. We are all here if you need us; to listen, give advice, whatever, anytime.
Take Care...
Coming up on my 4 yr anniversary in 3 months... and my hubby and I will celebrate our 25th wedding anniversary in September, where has the time gone? So very blessed!
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mimi, congrats on 4 years! good inspiration to all, keep up the good work. you have a huge celebration coming up!!
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It has been so very long I had to stop in and send my love out to friends old and new...
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annettek I've missed you. Hope all is well with you.
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Yes, I've missed you too.
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Hello all my sistas
Guilty for not checking in.
Annette,Sheila,Chabba,Mimi..we came a long way baby.
If I forgot anyone I'm sorry.
Ill be back.
Hugggs grannydukes0 -
Sherry and Eph...sorry.yeah we did come along way.
Love,huggs and kisses
Grannydukes0 -
Popping in to welcome all of the new ladies. So...Welcome!!!!
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Sorry for not stopping by in a while. I have been off "doing stuff".
I just returned from a week with my grandbabies. Actually, they're growing up so fast, I guess I can't call them babies anymore. Little Miss is 6+ yrs & the little Mister just had his 5th Birthday while I was there.
Hope all of you are doing well. I think of you often.
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Can I get any advise from patients with stage 1 grade 3 IDC who refused tamoxifen. I'd like to know if they used any alternative treatment and how are they surviving?
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I am a triple neg. and since you were offered Tamoxifen, I guess you are not. However, I am looking my ten year survival anniversary close in the eyes. You might want to add your "signature" to your post showing the full diagnosis, so someone with something closer might speak up.
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