TRIPLE POSITIVE GROUP
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Kate I too had a slight pain when pressed on my upper left breast. Complained to my primary care 4 years prior. He said no lump and he felt it was connective tissue. I just had an US on that breast too. 4 years later in the same spot 6.5 CM (1cm was DCIS) tumor. Still no one felt a lump.
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I would not have found the lump if I had not had pain. Being so young it might have been awhile before we caught this, so I am thankful for the pain and early detection.0
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Hi ladies. I may as well introduce myself as well. I'm early in the process (feels like forever though) but Thursday I have multiple appointments at a NCI center. I'm terrified of what I'm going to find out but I guess I have to get started. The waiting has been torture!
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Hi twiggy,
I feel you on the waiting is torture! I finally have a plan and a day to start chemo. It's been since June that I was diagnosed. I can't believe I actually almost want to start chemo - the sooner I start, the sooner it's finished I guess. Where are you doing treatment? I'm in California up by Lake Tahoe, so I'm driving 3 hours to UCSF in San Francisco. Makes big difference leaving the mountains and heading to the city to get the best care.
Keep in touch! Hope you're doing ee
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Star,
I was treated at UCSF, it's a great hospital
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Hi twiggy! I hope everything goes well for you tomorrow. As others have mentioned, the uncertainty in the beginning is the hardest part, and you already know how tough it is to wait. Soon you'll have a plan in place & can start fighting back!
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Hey all,
Just wanted to stop in and update you all on my headache/arimidex situation. I went off the arimidex for 3 weeks, per my MO, with no relief in my headaches. We went out west to NV and UT and no change in my daily headaches so I don't think allergies or stress. BUT - had an brain mri yesterday and results posted today and that is normal!! whew!! So now I am thinking muscular, maybe neck, issues causing the headaches. Anyway, I am so relieved on the brain result and wanted to drop in and let you all know. I see my MO Friday and we will talk about either starting back up on the arimidex or trying one of the others.
I see so many new names in here and am so glad you all found this forum - but sad you needed to. This was my go to place for encouragement and advice and sometimes it seems like yesterday that I was posting in here through my tears.
You are all in my thoughts!!
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linda - sorry the headaches continue but yay for the clean scan!
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Linda, good news on the scan .
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Well, I just got off the phone with the breast surgeon and the future is starting to sink in.
Apparently my case is so rare that they presented me for discussion among all of the breast cancer teams at the comprehensive cancer center where I will be treated. Fantastic...lol.
So. they are calling it Stage IIB, TXN1. An occult breast cancer and I'm triple positive. Apparently they see this situation very infrequently, especially among women so young (I'm 43).
They want me to do chemo first (about 3 months she said) Then she said that occult cancers have the option to remove the breast at issue or irradiate that whole breast/ other biopsies. I think I'm leaning toward the mastectomy - though I was told that there was no difference in survivability between the two options. What would you do?
After surgery I'll start my year of Herceptin. About a month into the Herceptin I'll have to have radiation. Then the anti-hormone medication for the long term.
Whew! It's a lot to take in. The oncologist also called and asked me to come in tomorrow to discuss treatment with her in person.
I'm reeling....
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edwsmom I'm sorry to hear of your dx. This group is so supportive and know so much comnined info it's amazing. They are great. I lurk loo a lot and even though I post rarely I am always greeted warmly.
Linda I am so happy you got a clear scan. I have horrible migraines also. I feel your pain. I take Trokendi XR
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Hi Edwsmom, I found this link. I didn't read all of it and it's kind of short but maybe it will help and if you post in it, maybe there are others who can help give you some more information. https://community.breastcancer.org/forum/5/topic/737731
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Edwsmom,
Triple positive BC is a marathon, not a sprint. I was diagnosed last June and I'm still working on my year of Herceptin, never mind 9.5 more years on Aromasin (hormonal therapy). You just have to take it one treatment at a time.... Best wishes to you in making your decision; I opted for lumpectomy myself.
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Linda,
happy for the clear scan!!!
Elaine, Edws,
it's so true a marathon rather than a sprint. i was just talking to my husband the other night, when I had triple positive bc 25 yrs ago, it was surgery, 8 months of chemo over and out...this time..it seems never ending...we're always taking or doing something or someone is looking at something. It's very strange to compare them but the one thing that's true here is that this time there are things to take after chemo (herceptin AIs tamox) back in triple negative world, after chemo that was that!!! So, thinking about it, it;s great that we all have stuff we can do after primary treatment is over to better our chances.
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mini,
Ha! I got even stricter and went vegan and guess what??? Cancer again , so I just ate some ice cream.so shoot me. I still eat mainly vegetarian though at my Drs request I do eat a tiny piece of fish or meat once a day, literally maybe 2 ozs they insisted I do this during chemo, and so I'm still doing that. Of course I still eat meat for traditional holiday dinners , Christmas, T-Day, and Easter. I have some pretty screwed up mutations going on due to exposure to radiation as a baby ( long story) I test negative so far on all genetic links so I think it never ever mattered what the hell I ate. A chocolate chip cookie sounds pretty good right now. ; )
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Hello to everyone. I am hanging in had Herceptin yesterday and due for third chemo on Wednesday. Today is apparently not happy stomach day ugh!
Has anyone else had a hysterectomy but still ER PR positive? I am 100 ER and 50 PR positive. Is this coming from the adrenals?
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Greta - the percentage of ER positivity is the number of receptors on 100 of your breast cells, which is independent of the amount of estrogen circulating in the body. Estrogen fuels those receptors - but how much you have, and where it comes from, is a separate thing from receptor percentages. I had a total hysterectomy/oopherectomy nine years prior to diagnosis with breast cancer and was 96% ER+. Yes, adrenals produce androgens which the enzyme aromatase converts into estrogen. That is why post-meno women still need hormonal therapy for ER+ disease.
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Left-field question for the board of honesty: my NP recommended vitamin E oil for vaginal dryness (as in, during the day, regular activity dryness--for intimate situations, I'm going with water-based lubricant or coconut oil). Anyone had results with this, good or bad?
Every mucous membrane in my body took the hit from the first round--I'm using vaseline in my nose, Systane eye drops, Biotene, and hard-core lotion. . . . I'm told to expect the same for future rounds, on all fronts with the exception of cumulative fatigue, and that the fact that I had "minimal" SEs was a good sign for things to come. I'm going with that, because the alternative really sucks.
Thanks in advance for any advice!
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Kate,
I was diagnosed with high grade Triple negative bc in 1990 in my 30's. The chemo dried everything up, since I was trip neg my MO send a prescription for me to a compounding pharmacy for a type of lube safe for me to use. However......it was just was easy to just buy KYjelly which has worked big time for us for the last 25 yrs, and even now with Trip Pos bc, and arimidex..there are no problems still using the KY
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SpecialK thank you for the information!!! My MO keeps telling me tamoxifen and finish herceptin after chemo. Also says mastectomy isn't necessary. He also said I am not in menopause. He said hysterectomy has no bearing on that. I am just trying to make the decision of mastectomy or not. Before this HER2 dx there was no question it was supposed to just be lumpectomy and radiation with tamoxifen. Now aim just not sure.
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Hi all, I am seeking some advice. I was dx'd triple +, llB, 1/2 nodes (no ALND). It took awhile to get over everything even though I never did finish chemo or herceptin. Life went along and have been well for about one year (long story). Anyway, I recently landed a new job with more than 2.5 x my current salary. I start the new position in 5 weeks. Life is looking up!
Now the problem. I found a lump in the opposite breast, but did not pay much attention to it for a few months. But last week I had to lean over the washer and really felt it! re-examined the area and it is much larger. Sent a message to my MO to see if it could wait until next month's appt. She said no and sent me for an US this week. Of course it requires a biopsy as she said it is a concerning nodule. I did not tell my new employer about breast cancer (I'm almost 5 years out) and want it behind me. They want to do the biopsy right away. I have to go for a pre-employment physical at the end of Sept. I am not saying anything to them, and I don't want the bruising to be there. of course it could be benign (birads 5) I want to wait until after I start the new job, but I think I will be pushed sooner. What do you guys think? It has been there longer than that, so I'm thinking it will be fine to wait. With the first dx, I had the common just get it out. This time I'm much more relaxed and calm at this point. I really want this job. Thanks in advance
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Moni.731 I'm sorry to hear your dilemma. I think the right thing to do is get your diagnosis promptly. If it is not cancer you can relax. If it is cancer you could save your life and make informed choices. Good luck.
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moni731 what kind of work physical requires you to show them your boobs? Also they can't fire you for having medical condition. I mean you can do your job. Just cause you had a biopsy doesn't mean it's cancer. And we all know that just cause it's cancer doesn't mean your life ends.
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Thanks for the opinions. I was trying to remember what a work physical required, as it is a medical position. I remember wearing a gown last time. With the last biopsy, I bruised a lot up to my neck and down arm that would show. I am afraid to say the "C" word, as the last time I was terminated from my position and had to threaten suit (hire lawyer) in violation of ADA regulations to regain my job. Just do not want anything to trip this up. You would think the medical world would understand better, but it is the opposite, at least where I work (give them a reason, you're gone). Not the employees, but the organization. I will think of this for awhile.
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Moni - is there any way you could reschedule the physical to the beginning of next week, then do the biopsy after? Just a thought.
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BlownOffCourse_ unfortunately not. All of the pre-employment stuff is done the week before we start. With the last dx, it was 5 weeks between the mammo and the biopsy so I'm thinking this is not so long. Even if this is positive, I am having no further tx as my MO said 'you almost died last time, I am not going there again'. So maybe surgery only if this is positive. Kind of thinking I was out of the woods at this time.
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Hi all. I'm finally home after my visit to OHSU in Portland. I had appointments with a surgeon and MO along with CT and PET scans, labs, and an echo. Whew! The plan is for 6 treatments of THCP followed by surgery to cleanup the lumpectomy margins then radiation and continued herceptin for a year. I'm having trouble finding anywhere closer to get treatment that will be covered by insurance so I think I'm going to be making the long drive to Portland. At least I have a place to stay up there with my brother. Port surgery is hopefully this coming Friday. I'm waiting to hear the CT and PET scan results so I'm still a bundle of nerves and having extreme difficulty sleeping. Keeping fingers crossed for good news on that.
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twiggyOR some insurances will let you do Herceptin at home. Once you are doing Herceptin only look into that. I didn't do it because I only live 3 miles from treatment center but I know a gal who did.
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Thanks Lago. Do you mean she did the herceptin at a local doctor?
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Nope. A nurse came to her home and administered it
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