TRIPLE POSITIVE GROUP

Mommato3

I agree!! My risk of getting BC in the first place was pretty low yet here I am. I'm young(ER), always been thin, keep active, have an occasional drink, breast fed all three of my kids, and had a pretty good diet. I'll continue to do that stuff with the exception of breastfeeding my kids. They're 9, 9, and 11 now.

KateB79

Iago, I agree completely.

I'm young and tried to do everything right, too. If cancer is in the cards, it's just in the cards.

ashla

Hi everyone!

I am so hopelessly out of the loop here but just gonna pop in and say hi & that I agree with Lago & Kate... Dense breasts and my age were my only risk factors.

Still Having all kinds of trouble with anastrozole . Some trouble all along but at 21/2 years out from starting it (in November) it became worse. Hit a wall..

Took a month off in May and felt great. Put me on Femara and it was worse . Now back to anastrozole every other day ..... This is NOT the way it's supposed to be done but he's asked me to do this for 2 more months . At that point I think he'll put me on tamoxifen. I'm just past the 3 year mark on AI.

Saw him today and he said the thinking behind all our treatments to destroy and prevent cancer recurrence is that surgery is 1/3 effective alone . Another 1/3 for chemo .( presumably with immunotherapy). The final third is the hormonal therapy ... AI & tamoxifen .

Best wishes to all...:)

Suladog

Lago,

So glad you posted that! First time I was diagnosed I was a non smoking non drinking running vegetarian in my 30's ....the second time I was the same only vegan and 25 yrs older... Also I've stayed away from soy products most of the time...each time I've had some sort of wonky mutation and I sure as hell, wouldn't go to Vegas with my track record. Luck indeed

Gretagirl

Lago thanks for posting! I don't even try to figure out where why or how any more with cancer. I do feel the hormones in our food supply play a role in some cancers and the reason you can't tell a 12 year old froma 20 year old anymore. Worries me about our future generation and what they will face. My daughter at 25 with adenocarcinoma had several twenty something year old young ladies she met with some form of cancer.

Jerseygirl927

no one knows, or they aren't saying, I thought I lived a pretty good life, no smoking, sometimes wine with dinner, no birth control pills, no hormone anything, but here I am too. It's got to be in our food. If anyone can think back, I did have mastitis in the breast I had cancer in about 4o years ago, I sometimes wonder if that contributed to my cancer? Anyone with that factor? I try to rack my brain trying to figure it out but they probably never will.

Just a mention, I try to purchase all natural products, go to Dr Mercola.com he is a pretty good doc, naturalist and I have been listening to him for years about different theories he has and what's making us I'll. check it out, I have no affiliation but he makes a whole lot of sense.

starsarestars

Hi everyone,

Just wanted to introduce myself. My name is Melinda. I'm 39 and about to start chemo before any surgeries. Triple positive. Feeling freaked out right now and afraid of losing my hair. But I'm going to try the Cold Caps.

JenPam

Thanks for posting that, Lago!

Gretagirl

Welcome starsarestsrs. You found a wonderful group for support.

Kthielen

Melinda,

Welcome to the club no one wants to be a part of!! This is a wonderful site and helped me through some tough times. This diagnosis is a roller coaster of emotions. Losing my hair was one of the hardest things for me, they make great wigs though and no one could ever tell I was wearing one!! Good luck with your first chemo and lean on these wonderful women for support and advice!

Kathy

wpmoon

Melinda - so sorry you're here. But I wanted to chime in and say that I had success with cold caps. Check out the board "Cold Cap users, past and present to save hair". There are a lot of good tips on that board. Good luck to you!

rosesrx

Welcome Melinda, we are here for you. Sula can speak to the cold caps and there is also a thread. I use the cold mitts and booties and am happy to report no nail lifting or neuropathy. My last TCH is the 2nd of September then Herceptin every 3 weeks thru May. The whirlwind of tests, scans, appointments and procedures is disconcerting and overwhelming. Take a deep breath, will be thinking of you. Keep us posted.

As to the how's and why's, I did that the first go round in 2010. My conclusion #1 I'm female #2 I have / had breasticles #3 No kiddos.... None of which I can change. The factors I could have changed the past 5 yrs would be eat healthier, reduce etch. I wish I could have been more active and loose weight but 6 broken bones and 7 surgeries over 2.5 years plus taking Tamoxifen 4 yrs added 30 lbs. I don't play the blame game but accept that bc is what it is. As my MO said the horse is out of the barn and we will deal with things that come up. I was wanting markers and scans but quit chasing ghosts and carried on. Living and striving for ambiguity (thanks to Ann S.;but doctor I hate pink)

starsarestars

Thanks! I'm checking it out.

lago

ashla have you tried Exemestane. Physically I am doing much better on it that Anastrozole.

Melinda we were all scared. It's that fear of the unknown. Most of us go into our first chemo scared waiting for something to happen…and nothing does. It's actually a pretty long boring day but exhausting because of the stress. Bring something to do to keep your mind off stuff

KateB79

Hi Melinda, and welcome. This is a great resource. It's made me feel much less scared and alone.

As for wondering how and why the cancer started . . . I went there for a few days. I'd had pain in the spot where the tumors were, intermittently, for several years. (Yeah, I know the whole "cancer doesn't cause pain" line. It's a lie.) Thought nothing of it until there was a mass in there. . . . The thing grew so, so quickly--which I know is a GOOD thing, in terms of chemo doing its job.

Other than a few misguided years in my teens and early 20s, I've always done everything right. I eat right (clean--organic most of the time, only clean meat and dairy, etc.), I take vitamins, until diagnosis I exercised like a fiend (now I get out to walk every day, but conserve my physical energy for more important things, like thriving during chemo). I get enough sleep. I may have tied one on a few too many times and eaten too much cheese, but other than that. . . . I honestly think of it this way: if it's in your cards, it's in your cards. There are things we can do to minimize risk, but sometimes genes mutate and, when they do, sometimes we end up where we are. I hate this fatalistic view, since I'm pretty type-A, but it doesn't do much good to sit and wonder whether I did something to cause it.

I will say this: for about six years, I had a slightly elevated lymphocyte count on my CBCs. It worried me; I asked different doctors what it meant, and was told that it wasn't "statistically significant." On my last CBC, the first one after surgery and prior to my first infusion, my lymphocytes were low-normal. Go figure. Coincidence, or not?

lago

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.

Musosgirl

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.

twiggyOR

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!

starsarestars

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

Suladog

Star,

I was treated at UCSF, it's a great hospital

JenPam

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!

linda505

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!!

SpecialK

linda - sorry the headaches continue but yay for the clean scan!

ang7894

Linda, good news on the scan .

edwsmom

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....

jumbledbamboo

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

txmom

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

ElaineTherese

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.

Suladog

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.

Jumpship

Suladog-

I think of you often. Vegetarian/vegan healthy gal and still cancer. My diet was okay, could be better and we made a lot of healthier choices over the past 5 years then I get hit with cancer. My kids are like, why not drink out of plastic water bottles, why not eat lots of sugar, etc. You made lots of changes and you got cancer.

So yesterday I met with a new doctor that wants me to eat well, with a specific plan, for 30 days. My survival instinct says "yes!" anything that will help keep me here. The mother of a few teens in my says, "you have no idea how a chocolate chip cookie can make up for a sullen teen who isn't speaking to you." So when I don't eat as well as I know I should I think, well, if I was perfect I could still have gotten cancer. Who knows? Of course if I eat like crap and the cancer comes back I'd hate myself for that.