TRIPLE POSITIVE GROUP
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twinmama - ME TOO!!!!!!! my body feels 80!
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momma - so right now you are on tam alone? did your periods come back? the only reason for my ova suppression is because mine came back - if your pre-meno and periods stay away they wont shut you down but you will still have some estrogen floating around which is why they wont put you on an AI
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I had asked when I first met with my MO about recurrence. I said I had read with her2, it was 2-3 yrs but ER+ was further out. When would I ever feel somewhat safe? He said this issue is why they have changed their guideline on hormone therapy to 10 yrs to get more benefit from it. I still feel like the Her2 is much more important right now. That is what causes the aggressive, grade 3 tumors.
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I'm not on anything yet because I just started chemo. My current MO had said we'd check levels when I was done with chemo to see where I was. Then we'd make a decision. This started because I moved and the new MO said I needed my ovaries out after chemo. There wasn't any discussion, just get them out.
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Lago, you were making me feel better but now you're scaring me again. My tumor was 4cm when taken out. It couldn't be felt 5 months earlier by my gyn. I didn't feel it 2 months earlier. In the 4 months prior my diet was high fat, drank 6-7 vanilla cokes (on top of reg cokes) per week and had a lot of stress. Did all that make it grow really fast? Why no nodes? My MO said my chance of recurrence was low. Trying to make me feel better or is it true?
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My son jokes that I don't drink enough alcohol, so thats why I got cancer. I'm sure that goes along with reducing stress, which I had a lot of for years before my dx.
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momwriter I specifically asked my MO (2 weeks ago) if Tamoxifen is less effective in triple positive and she said no. AI in general is a bit better for anyone who is hormone positive regardless of HER2+ status. And if you are premenopausal ovarian suppression with AI is better than Tamoxifen < that is the latest that is being published all over the place. But after the first 3 years you still need to worry about the ER+/PR+. Some reoccur 15-25 years later.
But if your MO says your chances of recurrence is low then listen to her/him. I don't know your complete path/history. I am not a medical professional. All I know is my onc says my risk is high due to size, grade 3, etc. I thought it was moderate. I also had no nodes. But of course she was trying to scare me into staying on the AI instead of quitting or going on Tamoxifen. The fact that we had no nodes is really good but we still had grade 3 fast growing tumors. Also remember that this August makes 4 years NED for me so I'm obviously doing fine. With treatment our chances of recurrence is low. For me it's about 16% chance in 10 years and I'm sure each year I'm alive that goes down. Your tumor is smaller so it might be less but of course age is part of this too. I was 49 at diagnosis.
I was healthy diet, low fat and thin so don't think you made yourself get this. They really don't know what causes it. Just know some of the risk factors. Sugar makes all cells grow not just cancer cells. You do need some sugar in your diet. Granted process sugar is not good for you but it's more of a problem for heart disease. Talk to a cardiologist. They hate sugar just as much as a MO hates cigarettes.
Rozem the HER2+ usually means we are grade 3 and fast proliferation rate which are all factors considered high risk.
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We have never talked about a specific % with recurrence. He just said low. We are doing everything we can to make sure it doesn't come back.
My uneducated guess would be she wanted to scare you. Especially since they now recommend 10 yrs instead of 5 and you are considering quitting prior to the 5 yr mark.
I tried the Predict website a while back to see what it said for me. In my mind I keep wishing this would have happened in 10 yrs when my youngest 2 graduated from school. I plugged in 51 instead of 41 and my % for being alive actually went down. Due to me dying of something else? Even a tumor that is 2 cm smaller only made a small difference. I don't know how to interpret those numbers.
I really had been doing better emotionally. I know it could come back but it doesn't have to! I keep praying my MO is right. I think this all stems from my appt with the new MO (who is no longer going to be). His comment about the different treatment options, like he's assuming it will come back.
I know I didn't cause it but I'm worried I caused it to grow faster with my diet and stress. My diet, stress level, and exercise are the only things I can do to try to prevent a recurrence. Quite honestly, until a year ago my diet wasn't that bad. Maybe too much dairy though.
Good grief, I sure have rambled on!! I REALLY appreciate all the info and help you guys give me on here. It keeps me informed and able to have a serious conversation with my MO.
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Mommato3 You can't make it grow faster. You just happen to have a fast grower. Typically the younger you are and premenopausal the more likely your tumor will be fast growing and aggressive. It's not your fault your young. There are a lot of bullshit websites out there telling you it's your fault. Yes it's best to stay away from junk but you need to live. Also it's impossible to do all the things they say. Listen to your doctors and quality websites. If you read something print it out and bring it to your MO to discuss.
…And on sugar from 2 of the top research cancer treatment centers. Read both because they both have a few different points:
If you stop dairy you will have a problem with your bones and vitamin D. Try eating things like yogurt. But I still eat cheese. Just in moderation. If you're really concerned go organic.
Being triple positive is a good thing because there are lots of treatment for us. You're getting the chemo, herceptin then hormone therapy. Your prognosis is good. When I did cancermath.net with your stats, age and the treatment you are getting I got 89% will still be NED in 10 years and that doesn't even take into consideration you are doing Herceptin. Cancermath doesn't really work for me because my tumor is too big so they put disclaimer but based on what my MO said I'm 84%. This is only based on 5 years of hormone therapy.
Life has stress. You can't avoid it completely. Also there is no study that says breast cancer is caused by stress. There has to be several triggers for the light to go on. I personally feel stress is one of them but in most of our cases it's environmental stuff that we can't control. I feel living in the city near busy streets with car and bus exhaust is probably one of my triggers. Do I feel bad about living in the city. No way. I love living in the city.
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Thanks for the links Lago. I've seen so many articles and posts about sugar being bad that I was afraid I'd never be able to have a bowl of Frosted Flakes again. I've had so much guilt about causing it to grow faster.
The NP also said my dairy intake should be in moderation. But you know in your mind that you want to do as much as you can to prevent it from coming back. I sure wish I liked yogurt.
I never tried cancer math because I heard it didn't include Herceptin so I was worried about what it would say. Those stats look good to me!!
I agree that no one will say stress causes cancer but I have hard believing that. Stress causes so many other physical issues that it makes sense that it creates an environment for cancer to grow. Now I need to stress about not being stressed!
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My point is it's not one thing. It's many things that need to line up before the trigger is set off. And not everyone has the exact same combination of triggers. But you have to live not just survive. Trying to be perfect will not only stress you out but they don't even know for sure what you should do or not do.
Now to post my famous speeches again because I don't think you've seen them:
seat belt speech:
You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.
shit happens speech:
Some people win the lottery and become millionaires but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.0 -
Well, I was accident prone when I was younger so I'm pretty sure my parents expected me to get in an accident every time I got in the car. That's why I ALWAYS wear my seat belt!
Thanks for cheering me up with your speeches!
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Hey...I remember that speech! Got it when I arrived on this thread!
Mommato, Iago is correct...wise ladies on this thread. I can't make heads or tails of the cancer math, and to be honest, I don't really want to know. I got breast cancer, was low to minimal on the risk factor list. I am currently NED and have been since my first surgery. All my treatments are like an insurance policy....I am paying for it in the hopes I never have to find out I needed it. My best friend at the beginning of my journey was named "Ativan!" Helped me to just roll with things....I still have "what-if" moments, but figure I have slain the dragon. Hoping to retire my sword once my treatments are done.
Currently trying to re-train my brain to focus/pay attention. Have found a kind-of art therapy helpful. Adult coloring books, colored pencils and markers. My Color Me Your Way photo album
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Thanks, Lago. It sounds like AI is better than Tamox overall. But I'm on tamox until they decide I'm completely post-menopausal.(I'm 49, no period since 12/12). I'm used to the tamox so don't want to change and don't want some of the SE of an AI. But I will do it when it's recommended. I see my MO in 3 weeks and will see what she says.
re:dairy- according to a recent study, a high fat dairy diet was associated with recurrence in HER2 neg, hormone positive. (not triple positive). However, low fat dairy wasn't associated. http://www.breastcancer.org/research-news/2013032...
These studies are of course based on food diaries etc, so not all that reliable, and no control group- also no stats about organic/non. However, I was thinking that if it is true, perhaps it's the concentration of estrogen in the high fat products.
The study did make me feel better about low fat dairy. I just love low fat plain yogurt and kefir and don't want to cut back or cut them out.. I also love but try not to eat too much normal high-fat cheese.
I don't think diet was the cause of mine- I eat fairly healthy- exercise- consistently inconsistently. .but stress- yes, maybe. Two months before I felt my lump my son suffered from an unknown illness and could not use one leg. (it turned out to be shingles that didn't present with a rash so they didn't know what it was) It was incredibly frightening (one of those bargain moments, which apparently God took me up on). I think it was the stress, (or the bargain) that cause the thing to run wild and present as a lump. Also, many years ago, when I was a young high school teacher in an inner-city school, I was very stressed, and would feel pain in my breast where the tumor ultimately showed up. And I also used some fertility drugs which I totally think are a factor.
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momto3-did you move to indianapolis, or away from? That is where pbrain and I both live.
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Cami, your post about your close up made me laugh so hard I cried!! You are one funny woman!
Trisha Anne, you look beautiful in your new pic and I'm so impressed with all of your hair!! And yeap, to all going through chemo, I do have to say by the time I was admitted to the hospital, I had absolutely no fear if I died. It was weird...and yet very comforting.
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I'm not sure about that study. At the end they stated they didn't know if the women were overweight, exercised, took hormone therapy at all or the full five years or even if they were ER+. They also stated there was no relationship between high fat dairy and risk of recurrence. Again, everything in moderation. Don't drink a bunch of whole milk, ice cream and cheese. I want to feel ok with having a bowl of ice cream occasionally or a glass of milk with dinner.
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Fluff, I currently live in Lafayette. We lived in Fishers for about ten years b4 my hubby started getting moved around with his job (2009, 2011 & 2014). He was relocated to OH January 1st. I LOVE Indy.
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momwriter I was 49 when I did chemo. My last period was 2 week before chemo. I told my onc that my mom and sister went into menopause around age 51+. She put me on Anastrozole even though that wasn't typical course since I was perimenopausal but based on my mom & sister she felt my cycles weren't coming back. Tested me for 5 months. They didn't come back. I swear she really does hate Tamoxifen. BTW I know many women that had fewer annoying SE of AI than on Tamoxifen. You never know.
High fat dairy. This study isn't conclusive IMO. There could be a link but they need a follow up study with more controls. These paragraphs caught my eye. Exactly what I was thinking when I read the article:
"Second, it’s not clear if the researchers looked at what else the women were eating or whether the women’s weight and exercise habits were considered in the research. Being overweight and a lack of exercise are two factors that can lead to worse breast cancer outcomes and increase the risk of breast cancer recurrence.
Third, we don’t know the hormone-receptor status of the breast cancers in the study. If a woman was diagnosed with hormone-receptor-positive breast cancer, it’s likely that she would be prescribed hormonal therapy medicine for at least 5 years after surgery to reduce the risk of the cancer coming back. Did some (or many) of the women quit taking hormonal therapy early? If so, this also might affect the results of the study."
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We do too. I am a huge fan of Kathy Miller at the simon cancer center downtown. I don't know the oncs at IU health but I had two really bad experiences during diagnosis. Now, I may have to have some gyn treatments and I love my doc, but don't trust anything else about it. I'm getting a second opinion from a gyno onc on the southside and if he recommends something, he is doing it.
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Oh, and remember everyone, grade is subjective. It is designated by a pathologist. On biopsy, I was grade 3 by Dr. Downer. On surgery, I was grade 2 by Dr. A-Ok. I've worked in pathology for years, and it really can be just what the docs see. Take your surgical pathology as the truth, not your biopsy, where they only see a small part. And know that the differences between a step in grade is probably minimal. My BS told me she pays no attention to 3 vs. 2 or 2 vs. 1 and I knew exactly why she was saying that.
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pbrain, my grade 3 based on my biopsy. i had chemo first then surgery. my bs or mo didnt say anything about my grade after surgery, maybe they didnt even run the test again.
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Robin - Look at all your hair in your new avatar photo!! woo hooo!!
Nothing important to add to this conversation but I do appreciate reading all the info.
Feeling pretty good these last few days - seems like my SE from round three have been the least so far - except for fatigue which is worse. But in general I am doing ok.
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I have the name of a preeminent cardio oncologist if anyone is in need of this relatively difficult to find expertise. He is in the Boston area and affiliated and/ or on staff with Harvard/ Dana Farber/the Brigham .
No personal recommendation but appears highly regarded.
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Hi Linda, I too am feeling better after the third round. Probably 10% better than previous rounds, but hey, I'll take it. Of course, they did reduce the Taxotere by 25% since it was turning my hands into leather. I was afraid they would never be normal again, but they are so much better now. Just waiting on the results from echo yesterday. My resting heartbeat is around 100. Does anyone else have that issue during chemo? The MO didn't seem concerned when I mentioned it the last time I saw her, but the echo nurse seemed pretty alarmed.
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Hey efcjax,
I don't know if your RBC are low but I do know that this can cause a rapid heart rate but since we are doing herceptin it is best to rule out that this is the cause. When did it start? I have read others on the forums having issues with rapid heart rate that aren't doing herceptin also though. Hope they determine that it is jusst anemia and give you a transfusion. I used to have severe anxiety disorder and ALWAYS had a rapid heart rate. Have no idea why I do not have issues with that now - when I had it in my 30's they determined it was chemical though. So were your hands just that dry? or do you mean that they were in pain numb due to neuropathy?. I had pretty severe neuropathy first round so my MO reduced my carbo as he thought that was the cause. 2nd round hardly any tingly fingers/toes, 3rd round a little more than 2nd but short lived and now 10 days after really nothing on that end.
I am feeling surprisingly good today and if food tasted decent I would be very happy lol. Right now I am in the stage that everything tastes like plastic lol. I can still eat peanut butter and yogurt and I force myself to eat everything else that I feel I need. Most veggies taste OK. I am making a veggie protein shake once a day - they taste pretty good.
Pbrain - Both Mo's i talked to said basically that grade was mostly an opinion and that even though both my biopsy and surgical pathology said grade 1 that they really didn't give that any credence as it would be very rare to have an HER2+ grade one (the HER2 tumor was only 1 point below being rated a 2 anyway). Here is my thought on my test results and maybe one of you smart ones can weigh in on this - I found my lump in January. I was on HRT at the time - the patch - es and pr patch - lowest possible dose - was on it for 18 months. My tumors were extremely high er/pr - talking about 98 and 100 percent. The night I found the lump I removed the patch - I knew what it was - just had that feeling. It was almost a month later that I had the first biopsy - so the tumor, which I believe was feeding from my patch, lost its main source of food and due to that showed a slower growth rate than it would have if the biopsy had been done closer to me taking off the patch or IF I hadn't take off the patch. Does this make any sense lol. I would ask my MO but I think he would just laugh at me.
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Yes, Linda, my RBC was low, but my heart rate has been very rapid for a few weeks. Not sure exactly how long, because I didn't notice it until she read the numbers out loud. I asked my MO "doesn't that seem awfully high?" but she didn't seem to be too concerned. My hands weren't just dry, it went way beyond that. It first started about a week out from my first chemo treatment. I noticed my hands were itching and burning like crazy, like they were chapped, and they were very red. Several days later, they actually started peeling. There were patches on my skin that litterally looked like some sort of leather. At the time, my MO told me to take steroids for a few days, and that did help some. But when they reduced the Taxotere, those patches went away and my skin mostly looks normal now. My fingertips still look like I've been soaking my hands in water, but I can live with that. I have a tiny bit of neuropathy in my fingertips and toe tips, but very tolerable. I'm glad you're feeling better too.
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hi all
Woke up last night with bad pain in my lower left abdomen and back. Kept me up for an hour then fell back asleep. Woke up and off to the washroom then the pain subsided
My dry mouth is much better but still have slight discomfort in lower left abdomen. Stomach still not 100% but much better
We are going to orillia ont this weekend which is approx 2 hours north of toronto to see a comedian - mike from mike and Molly. He better be funny!
I hope to chill by the lake and maybe even go in for a dip
By the way; hail hail frosted flakes! Love me and still eat em!
:-)
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TKR is total knee replacement. Not fun. I had one a year before my Dx. Mouth sores--my dentist had an OTC toothpaste and mouthwash. Helped not a bit. What did help was ice chips during chemo. Suck on them intermittently. Doesn't need to be continuously. Hardly ever troubled by them after the first of 6 chemos. Meanwhile, only soft cool foods, nothing acidic, get some disposable "Toothettes"--soft foam toothbrushes-at a hospital supply place. Check some pharmacies. RNs use them on bed bound patients who can't brush, or have no teeth.
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TKR is total knee replacement. Not fun. I had one a year before my Dx. Mouth sores--my dentist had an OTC toothpaste and mouthwash. Helped not a bit. What did help was ice chips during chemo. Suck on them intermittently. Doesn't need to be continuously. Hardly ever troubled by them after the first of 6 chemos. Meanwhile, only soft cool foods, nothing acidic, get some disposable "Toothettes"--soft foam toothbrushes-at a hospital supply place. Check some pharmacies. RNs use them on bed bound patients who can't brush, or have no teeth.
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