TRIPLE POSITIVE GROUP
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Major, major change here.....
"A group of experts advising the nation’s premier cancer research institution has recommended sweeping changes in the approach to cancer detection and treatment, including changes in the very definition of cancer and eliminating the word entirely from some common diagnoses.
The recommendations, from a working group of the National Cancer Institute, were published on Monday in the Journal of the American Medical Association. They say, for instance, that some premalignant conditions, like one that affects the breast called ductal carcinoma in situ, which many doctors agree is not cancer, should be renamed to exclude the word carcinoma so that patients are less frightened and less likely to seek what may be unneeded and potentially harmful treatments that can include the surgical removal of the breast.
The group, which includes some of the top scientists in cancer research, also suggested that many lesions detected during breast, prostate, thyroid, lung and other cancer screenings should not be called cancer at all but should instead be reclassified as IDLE conditions, which stands for “indolent lesions of epithelial origin.”
While it is clear that some or all of the changes may not happen for years, if it all, and that some cancer experts will profoundly disagree with the group’s views, the report from such a prominent group of scientists who have the clear backing of the National Cancer Institute brings the discussion to a much higher level and will most likely change the national conversation about cancer, its definition, its treatment and future research.
“We need a 21st-century definition of cancer instead of a 19th-century definition of cancer, which is what we’ve been using,” said Dr. Otis W. Brawley, the chief medical officer for the American Cancer Society, who was not directly involved in the report."
http://well.blogs.nytimes.com/2013/07/29/report-suggests-sweeping-changes-to-cancer-detection-and-treatment/?smid=tw-nytimeswell&seid=auto&_r=00 -
Thanks for the great article ASHLA Nice to hear!
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JENN - amazing news!
i have a question for those who had taxotere - my eyebrows are still so sparse, i have to fill them in every day. Anyone else?
also - anyone on lupron/zoladex shots to shut down the ovaries? i tried starting another thread but didnt get many answers. My joint pain is really bad on these shots but my MO really wants me to stay on them. would love to hear your experiences with these
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pbrain - happy birthday (late! Have been dealing with DD and tonsillectomy - recovery is NOT going well, lol!) I know a few of us had to go on a diuretic to get rid of the excess fluid - my echos were always good so it was not a heart function thing, just a fluid retention thing. Maybe it would be worth a short-term try?
jennt - yay on the test results! Sorry you have pain though...
chicka - hang in there, and yes - you are funny with the one hair comment!
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i am starting to feel like maybe the breathing is anxiety related (hopefully). I had such bad news last week with a family friend passing away at 46 from ovarian cancer and a good friends sister (38) finding out her bc is back with a vengence (she was diagnosed 3 months after i was). Too much bad news all at once -
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Miss Jenn...yay on good news!
Miss Jane....I am still going thru chemo, but I am very much extra fluffy from the steroids..I feel like I big water balloon...all tight all over and ready to burst.
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rozem - sorry about all your anxiety producing news - do you have any Xanax or Ativan you can try to see if it eases the breathing difficulties?
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my friend who died of ovca is a childhood friend of my hubby, ive known her for a long time(over 20yrs) and she is my sister in laws sister - so this one hits close to home - she leaves 3 young girls behind. She was diagnosed a few months after i was aswell. Funeral/memorial this week and i have no idea how im going to attend and keep it together. Im going to my pcp for more ativan - too see if it helps the breathing and to get me through the next week. I feel like im doing ok, feel optimistic about the future then BAM i get pushed back into that hole again.
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thanks kayb and SK -
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(((((Rozem)))))) sucks. Prayers for you and your friends.
Glad to hear jennt and cypher. Nice news.
Much love to all.0 -
Happy Birthday, PBrain!
Jenn and Cypher - glad to read about good results
Rozem - you asked re: Taxotere and eyebrows - mine are almost non-existent, only very sparse growth since end of chemo, I also pencil in daily.
Tough week - adding hugs and prayers0 -
Rozem my eyebrows started to fill in nicely but then shed again. My onc said that could happen for 2 years. But the problem isn't Taxotere. It's the Anastrozole that is thinning them out. I paint Minoxidil on them every morning. Less shedding a bit of growth but I sitll have to fill them in. Thank goodness for Anastasia Brow Duo!
Sorry about all your lousy news. But remember their diagnosis isn't yours. You are doing well!
Ashla thanks for the link
ChickaD I felt like Violet too but it wasn't from the steriods. They actually kept the fluid down it was the taxotere. Also I looked great on chemo. I have a long face so the slightly puffed face removed my frown lines
More happy dances for the good news: linky
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Miss Lago...thats me Violet...lol
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Young women and breast cancer
http://copingmag.com/cwc/index.php/eupdate_article/young_women_and_breast_cancer?utm_medium=email&utm_campaign=2013_Jul_300 -
2years NED July 28th.....
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Hi Everyone,
I'm pretty new to this forum, have posted on a couple of other threads. I was diagnosed with HER2 3+ after I'd gone through bi-lateral mastectomy and hysterectomy (for endrometrial cancer). I'd thought I was done at that point, because my nodes were clean and nothing appeared to have penetrated further. It was a major shock to be told I'd benefit from chemo and a very difficult decision to make. Did anyone else have that struggle? I was told I was at 80% survival and chemo would increase that by 10%. Those of you who had no choice, please forgive my self indulgence regarding this question, but I keep wondering if poisoning my body is worth 10%. Of course, nothing is definite because even though the nodes were clean, it's still no guarantee and I'm actually a bit worried about a nodule on my lung (although my doc isn't ... says we breathe stuff in all the time or it could be scarring).
Any thoughts, anyone?
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Vilia, I was reluctant to do chemo, and if I hadn't been HER2+ they probably would not even have offered chemo to me. My invasive tumor was between 3mm and 5mm (they weren't sure because some of it had been taken in the biopsy), and Herceptin is standard protocol for 6mm and larger. But my oncologist showed me charts that indicated a 25% recurrence rate for women with my exact statistics and no chemo/Herceptin; that was too scary for me. I did ask if I could do Herceptin alone with no chemo, and my oncologist won't do that. Since making the decision and reading more about HER2+ I'm very glad I decided to go ahead with it. I did get a relatively "mild" chemo - 12 weekly Taxol + Herceptin - and had very few problems. As you say, nothing is definite even with treatment, but I know I would be second-guessing myself if I had declined chemo/Herceptin.
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Vilia,
I didn't fully comprehend the elements involved with making the choice when I was diagnosed in 2002, and I reluctantly did chemo (CAFx6, a regimen still used but less commonly), followed by rads and then a short run of tamoxifen.
What I would have liked to have understood better when I was recommended to have chemotherapy is:
1. ER+ patients benefit the least from chemotherapy. They get the most benefit from hormonal treatment with drugs. ER- patients benefit the most from chemotherapy and do not usually benefit from hormonal treatment with drugs.
2. ER+ patients tend to recur "late" (such as 10 or more years out from treatment), whereas ER- patients tend to recur "early (such as between 0 and 5 years out from treatment).
3. Chemotherapy has essentially no helpful effect on cancer after approximately the first 5 years post-treatment.
4. Between 1/4 and 1/3 of HER2 positive patients who take tamoxifen do worse than those who do not. Between 2/3 of HER2 positive patients who take tamoxifen do better than those who do not.
5. My family history is loaded with breast cancer; yet only one family member died of bc and that one was diagnosed "late", back in the 1950's, and NONE did chemotherapy other than me. All lived long lives. Unfortunately, while medical providers are always interested in the number of family members who have had breast cancer, they fail 100% of the time to ask or consider whether there were any recurrences among them.
Had I understood those factors better, I would not have chosen to do chemotherapy, because I had no positive nodes/no lymphatic involvement.
Best wishes with your decision.
AlaskaAngel
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Alaska - I just wanted to add that slower growing (grade 1 or 2) ER positive tumors do not respond as well to chemo (not as well does not mean not at all) grade 3 tumors also repond very well to chemo - which most her2's are. I was 95% ER positive, grade 3 and had neo-adjuvant chemotherapy. My tumor was completely gone after chemo so I would say that it worked! I would say that the grade 3 is what did it, faster dividing cells respond best to chemo. Just another perspective
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rozem, that is a good point. But stem cells are believed not to be responsive to chemotherapy.
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Thank you everyone for your input. I did start chemo on 7/26, but kicking and screaming, so to speak. My oncologist would have done Herceptin without chemo if I'd chosen to do so, but told me my survival would be reduced. I went for a second opinion, but he was more adamant about chemo than the first one. It sounds like it really is a toss-up. I only had one maternal aunt with breast cancer who was cured and died instead from heart failure (she smoked like a chimney). I don't remember the size of my tumors; I had one DCIS and one IDC in the same breast ... it was in the path report, of course, but I have such a slew of paperwork now from each surgeon, I'm overwhelmed by it all and would have to dig.
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Welcome Villa--these woman know what they are talking about--a wealth of info comes from this thread--so any questions, concerns just ask away someone will give u a great opinion )not me tho) I just read.
I scrambled like mad today for my surgeon's app't tomorrow--He sqeezed me in--then I needed a ride--Oh my GF was available for tomorrow. Of course she said r u sure u know where we're going- Igh my friends are all the same--I told her we were going to my old hospital for this one, about 20 minutes from here- she's so funny. Well we'll see what happens tomorrow, this should be interesting NOT
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AA: Thanks for your perspective on things! Great information!
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Vilia It's never easy when the guy/gal who went to med school and has all this experience treating cancer patients says "well here are your choices… it's up to you." The one thing I learned with breast cancer is the glass is always half full and half empty. There is risk with both choices. If it weren't for the HER2+ I'm sure they may of given you a pass on chemo. Also your age might play a part in this. I assume you are premenopausal/under 50? The younger the more aggressive they typically treat.
But being nodeless I know how you feel. Granted my tumor was to large to play with the risk.
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Vilia, ugh. What a double whammy – endometrial cancer and bc at the same time?? How did that happen? I guess that’s the million dollar question, eh?
Let’s see … I agree with Alaska, except with her 2nd point about er+ women recurring late. That’s not necessarily the case with women who are her2+. In fact, I know a woman who had a very small tumor (less than 5 mm) and was her2+, and she was on tamox or something else. She did lump + rads and no chemo or herceptin. Now she has mets to her liver. (4 years out I think).
It would be good if there were some crystal ball and you could tell in advance how hard chemo was going to be on you. It wasn’t exactly fun times for me, but it wasn’t THAT bad.
Cami, what’s tomorrow? Good luck with whatever it is!
Thought this might interest everyone - https://www.healthofwomenstudy.org/ In the cover email it said “Breast Cancer Survivors: Help Us Develop a Questionnaire on the Collateral Damage from Treatment.” Very on topic!
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Cypher,
Thanks for the link. I'm usually reluctant to violate my own privacy, but in this case because I had suggested 10 years ago to Dr. Love's assistant that such a mass participation would be a good idea, I filled out the 2 surveys and am a statistic for it.
In regard to your anecdote about the ER+ HER+ person who didn't do chemo and progressed, the problem there is that somewhere between 1/4 and 1/3 of those who are HER2+ and use tamoxifen do worse.
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Alaska, hmm. That is certainly a sobering statistic. Are there studies you can point me to on that? Also, I am HIGHLY er/pr+, so I can't imagine not going on tamox. If I were 10% it might be another story. Also, my mother had bc, had a mastectomy, and has been on some kind of AI for years ... in fact oddly she's still on it. Weird. I guess it was a pre tamox kind of thing? In any case she never recurred. So hopefully I'll have the same pattern. (You and me both, right?)
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Rozem , Kayb et al,
I also had neo adjuvant chemo and a complete response. My tumor was 3 cm and it was gone @ time of surgery and I was also grade 2...not grade 3. Don't think it possible to understand whether it was chemo or herceptin that did it at this time. These answers are coming as treatments are getting more personal.0 -
Cypher I hope nothing else happens for u--Again I'm not a statistical person u know that cuz there are to many oddities in everyone of us. Me and my no rules has never been unproven just tweeked.
Tomorrow (well this morning I have to see a surgeon--(my old one) my organ have moved. My colon had com apart and crawled up my side and is now were my liver should be, my liver has been pushed up into my ribs--at first this pain was thought to have something with my crumbling back but test proved differently, I explained the pain as 2 objects pulling on an organ playing tig of war.. Can I GIVE a better explanation than that. hahaha. And it was talked about and u know how I am that the colon could have cncer and I said I will not stand for that--So I'm sitting for the exam today. I have no idea what to wxpect ecept for them to put my inners back where they belong and get rid of this rogue piece of colon. So u see---That's why I say no rules--Of course it's not agreed with but I can't help it. I know what I've been thru the past years an it's always nder a cetain low % but how many series of tests with how many people were actually done. I'm thankful for all these years of doing better than they thought but always getting somethings that 1 or 2 Drs. are really puzzled. Hence my opinion--I love that word hence
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Camille,
Hope it goes well today...whatever it is!0
