Will 30% of Early Stage (1-IIIA) go on to metastasize??
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Hi ChiSandy:
Thanks for clarifying re the atypical nevus (I now recall that very good news). A post on the last page, which referred to you in error (later edited to refer to SpecialK), seemed to suggest that chemotherapy may have been a contributing cause.
My sole point was that since you did not get chemo as part of your breast cancer treatment plan (in part due to your RS), your later skin lesion had no relationship to chemotherapy.
(I wasn't saying that hormone receptor, HER2 status, or RS would be used in the setting of a malignant skin cancer.)
BarredOwl
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Kathy, I do fit into the category of those who would gain about 2% points if I did an AI and OS rather than Tamoxifen... I'm actually planning on switching at some point. MO said sooner the better for those odds. I just dread menopause.
Voracious, I suppose we have two different vantage points. I don't view myself as a victim at all. But I take full responsibility for my own health and know that my actions do affect it. I never wore sunscreen as a kid and tanned as a teen. I got melanoma. My mom and my fault - no question. I'm quite positive my own unhealthy eating and sugar addiction helped fuel my BC... Maybe if my genetics weren't leaning towards it - I would have been fine.. but my genetics, especially COMT, put me at a greater risk. Of course I was unaware of all of this, but that doens't mean my actions didn't contribute. I don't beat myself up about it.
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Chemo & skin cancer - I have had 6 or 7 basal cell cancers removed by MOHS surgery. Every 6 months my dermatologist has to freeze at least 10 pre-cancerous lesions, sometimes 20. Usually once a year at least one spot calls for a biopsy. After chemo, she was astounded to see that my skin was totally clear. No AK's, nothing. We laughed when I told her I didn't think the result was worth the treatment. It lasted 6 months.
And VR - I'm with you. I don't think we can go down the road trying to determine what we did wrong. Yes, we should live healthy lives, but I was. Cancer is the luck of the draw. I refuse to think it's my fault or blame anyone else I know for causing their disease.
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minus...😘
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Lisey, when I said one of the reasons I chose chemo was to know I had done all I could, it was responding to a question you posed asking for input and opinions. It was not to imply people who make different choices did not do all they could. It was recommended by my oncologist... Strongly. so for me, it was doing all I could, and mentally It would have been harder on me to not do it... That's because of me and how I think. We are all individuals, so when asking for input, you'll get various opinions. My mom who recently had breast cancer again after 20 years cancer free, chose not to do chemo with a high intermediate oncotype... And I 100% supported her decision. For her, hormonal therapy seems to be the key.It was specific to her situation. When I give my opinion on why I chose to do chemo, I am usually careful to say that it's my decision specific to my situation. People make decisions on whether to go radiation or not, hormonal therapy or not, etc. it was specific to the treatment choices made available to me in my situation. I apologize if I was not clear about that; I was simply offering input in a thread asking for input. My reasons in my situation were researched and specific to me. many people may agree or disagree with my decisions, and that is okay because it's my body and I live with both the positive and negative consequences of my decisions. Offering input when asked is different than telling someone that their decision could be one of the reasons their cancer returned. I honestly do not think you had any ill intentions at all. But I can tell you that a recurrence is much harder mentally (for many, including me) than the initial diagnosis, which is why I cautioned about making statements like that. In the world of what not to say ... To someone who has had a recurrence or spread... It's any "would've, could've, should've. Because it is all just speculation and we need to move forward, not back.
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The skin cancer thing! I was about 30 when I had my 1st basal cell CA removed. In my 40s, I had a few more removed as well as a squamous cell CA. Now in my 50s, they are showing up more quickly. I can pick 3 spots to point out to the dermatologist & at least 2 of them are Skin cancer(usually basal cell). I see melanoma as different in many ways & have not been diagnosed with it. I have friends who have it & are doing well several years later. Including one that received a chemo recommendation that she declined, 30 years ago.
Could I have prevented some of my skin cancers, perhaps. I live in California & have always loved to be outside. Effective sunscreens weren't invented until the mid 70s. But I knew the "sun" can cause skin cancer.
Could I have prevented my BC, No! Not with any knowledge available to me at the time or even now.
I was diagnosed with BC at 52. I did not do chemo. Like Lisey found, many on the boards here were adamant that you have to throw everything at it. Suggesting that I not pursue the oncotype test(it came back 4) & just do chemo. But I have positive nodes.....
Sure, I doctor shopped to not do chemo. Others doctor shopped to find someone who would agree to chemo.
So, just a non-chemo gal, who's good at growing skin cancers, *sigh*
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Also want to clarify that I have no way of knowing whether having chemo caused more skin cancers to form more quickly, only reported that anecdotally. My concern was that while my skin cancers have been BCCs, and relatively harmless other than leaving a lot of disfiguring scars, lisey's skin cancer experience involved malignant melanoma which is far more dangerous - so discussing this with her physicians was very important.
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This report on more health issues with chemo just came out... For those who have no options - I get it. But for those of us 'on the fence' this type of knowledge MUST be understood and weighed in the risk/benefits calculation http://www.breastcancer.org/research-news/chemo-may-up-risk-of-metabolic-syndrome
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I had node positive, Her2+ BC so didn't feel as though I had any other option than chemo/Herceptin. I had most of these symptoms soon after chemo, but within a year they had dissipated. The steroids, lack of exercise, less than stellar eating habits during chemo, swelling, weight gain, etc. all contributed. I gained 10 lbs, my blood sugar was 265 at one point, I was swollen so I am sure my waist measurement increased, my cholesterol went up, I had so much inflammation that my CA 27/29 doubled out of the accepted range - now the weight is gone, I dropped 30 points on cholesterol, no swelling, blood sugar normalized, CA 27/29 is within range. There is no question that the short-term, and potential long-term, issues from chemo should be seriously considered, but to look at these factors only a week after the end of chemo in a very small population of patients is, IMHO, not a true test of whether these findings persisted, were permanent, or temporary side effects of acute treatment. In the study write-up the authors admit there was no long term follow-up to know whether this had become a real issue, or a short term and solvable problem.
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Special K...THANK YOU....you made me feel loads better about chemo...hoping mine is also short term!!!
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KBEEE and Barred Owl
My previous post not here ..weird? so wanted to re- thank you both for all your enlightenment..
I called my Surgeon who said the stats don't support chemo for you but I am treating someone your age..intermediate onco..LVI..and she had reoccurrance!!!!
.I'm doing it..joining the chemo peeps..you know what...I feel great!! I have a plan and can now move forward..will post my specifics after meeting MO tomorrow. Phew...decision made..onward!
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lmencken, Wishing you maximum effectiveness from the chemo with minimal side effects. I joined the Sept 13 chemo group the first time and April 2015 group the second time and those ladies were (and still are) lifesavers. I definitely suggest joining the chemo group when you start. We're in Facebook groups now, but all are in touch and have stayed really close
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lmencken don't look back. You made the decision with as much knowledge as you could find/understand. Just keep looking forward. Don't look back because you can't change the past.
BTW I am celebrating 6 years NED today. Feeling grea
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Happy 6 Years NED, lago!
Best wishes, lmencken.
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lago!😘👍❤
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laho, woohooo!!! 6 years is something to celebrate!
KayB, I could not agree more!!! My former oncologist actually told me that pretty much verbatim. Luckily I ate healthy and exercised. My current MO is much more fitness oriented, stresses the importance of exercise and loved that I did a half marathon during chemo.... A slow one, but I did it. I did not gain weight either time during chemo. Many women gain because they retain water and some women cannot exercise because of more severe side effects, and that is a different story and unavoidable, but for anyone able to exercise during chemo, I encourage it! I think if it was encouraged for those who are able, the numbers with metabolic syndrome might decrease
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lmemcen, I'm in the same boat (almost) as you. MO recommends starting on 4 infusions of Taxotere with cytoxane. M while I waited for my oncotype, I had a feeling that despite 0 nodes, my grade 3 BC would push the DX up. I'm glad I'm doing chemo (want to do as much as I can to bring the RS down; have two small children)... My major concern now is taxotere and hair loss..
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Mazel tov on 6 yrs. NED, lago!
Interesting article, Lisey, as concerns chemo. But what still needs to be determined is the influence of AIs on the dyslipidemia component of metabolic syndrome. Tamoxifen doesn't affect blood lipids, though it does pose a blood clotting risk. It also increases the risk for endometrial cancer (and even in women who've had hysterectomy, retroperitoneal cancer--i.e., in the location where the uterus used to be). It also cannot be taken with a number of SSRIs, SNRIs or SDRIs that for many women mean the difference between life-threatening depression and a normal life. I can see how a premenopausal woman with a stroke or DVT risk, endometrial or uterine cancer risk (not cervical, which has now been found to be an STD caused by HPV), and/or a need for maintenance selective endorphin reuptake inhibitors to keep major depression in remission might be advised to consider ovarian suppression and subsequent AI therapy instead of tamoxifen. AIs are more effective in preventing recurrence in that they deprive the body of estrogen, rather than just interfere with estrogen receptors' access to it. And letrozole appears to be the most powerful one (though the steroidal AI exemestane is the only one to permanently inactivate aromatase--the nonsteroidal ones' inactivation of aromatase is reversible by discontinuing the drugs). But I have read (with the caveat that there are insufficient numbers of early-stage BC test subjects willing to risk a placebo and who haven't been on tamoxifen first--as well as not having tested subjects' lipid profiles pre-AI administration and the relatively short since time AIs began to be recommended for >5 yrs) that AIs--while not raising the risk of ischemic heart disease due to thrombosis, do raise the risk of it due to atherosclerosis (either by narrowing arterial lumen or--in conjunction with inflammatory processes--by causing “friable" plaques to break off arterial walls and block coronary arteries in the same fashion as do blood clots). And atherosclerosis is exacerbated or its development accelerated by dyslipidemia (high small-particle LDL & VLDL “bad" cholesterol and triglycerides and low HDL). My primary and my cardiologist husband are in agreement on this, even though the evidence is still anecdotal because most studies involve Stage IV patients or those who had tamoxifen first. Time will tell. But I do know that even though my triglycerides and VLDL remain normal, and my total cholesterol-to-HDL ratio is still in the “desirable" range (albeit creeping up since my pre-bc days) my HDL decreased from freak-of-nature levels to merely pretty good for a woman, and both my LDL (not sure of particle size, as that's a separate and costly test) and total cholesterol are unacceptably high compared to my pre-bc levels. (I last had a lipid panel three years ago, so who knows what my #s were at diagnosis and before letrozole.
What does this mean for a younger middle-aged pre-or perimenopausal woman with ER+ bc? That she needs to weigh the risk of a bloot-clot-caused stroke or heart attack on tamoxifen against the more conventional postmenopausal risk of atherosclerotic and/or inflammatory stroke or heart attack caused by the estrogen-deprivation that is the goal and hallmark of OS and AIs. Tough choices--and a sobering reminder that as we get older, there are fewer win-win treatment situations for many diseases, not just cancer.
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Kayb, good point. My docs expressed some concern about my exercise schedule,both during and after chemo. But there are actual studies proving that exercise can help against fatigue and other SEs of chemo, which I found to hold true. I have also found exercise helpful against LE. At Danish cancer hospitals, they have regular exercise programs for cancer patients. My mom came out of chemo with buns of steel and a free gym membership for a year post-chemo
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I'm 40yo. Diagnosed and MX this summer. Reading these are scary. My mom had MX when she was 43 (no chemo, rads only). She turned 70 this week. She had malignant bladder polis in the last 10 hrs (had surgery to remove plus 6 chemo infusions). But that is it in terms of recurrence - so no recurrence really. My father passed away from heart attack. So I have to warn doctors that family history of poor circulation & heart disease for the treatments... MO wants me to do ovarian suppression after chemo so that I can be on AI as they are more effective than Tamoxifen..
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Did you do oncotype? Is a high score why you are doing chemo and the Ovarian suppression/ AI route
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maybe, I ran a mile, walked a mile, ran a mile, walked a mile, ..... That is how I trained since I was doing chemo, and that is how I did it. It gave me something other than chemo to focus on and helped me as much mentally as physically. It is the slowest half I have ever done, but is the one I am the most proud of.
For anyone beginning chemo, there is an exercise thread in the chemo category, and it is a great one to be involved in to encourage you to stay active.
Momine, it sounds like Danish are way ahead of us in that regard
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KathyL624-oncotype dx 29
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KBeee, they did some of the studies on this in Copenhagen, and my mother was part of one of those almost ten years ago. But my BIL was treated for metastatic prostate cancer there over the last several years, and they made him run up and down the stairs and other fun stuff. This is a guy with bone mets, among others. He lost the belly and felt better than he had in years, in spite of the stupid cancer. I also have the feeling, which studies seem to support at least indirectly, that in hormone-dependent cancers especially, exercise can also help keep the beast at bay.
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Sandy, I feel really stupid not knowing this about the drug I am taking. "And letrozole appears to be the most powerful one (though the steroidal AI exemestane is the only one to permanently inactivate aromatase--the nonsteroidal ones' inactivation of aromatase is reversible by discontinuing the drugs)". I generally research everything very thoroughly, I think feeling so bad on Anastrozole which had me believing I was heading into Alzheimers I just didn't bother reading anything about exemestane. So where does that leave me? I can't take tamoxifen which my MO wanted me to take because of my strong family history of blood clots and stroke. My dad had high bp, TIA's and heart disease. Typical of his family, my mom's side is cancer and Alzheimers.
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kayb - I was one of the ones the doctors encouraged to eat whatever I could tolerate - but I had extreme nausea when I was going through chemo. I am a very healthy eater normally (med diet/hardly any red meat/dark veg/fruits/little dairy) but nothing appealed to me. I felt guilty having my ice cream everyday but its the only thing that tasted good! I still lost 13 lbs during chemo (and im petite) so that goes to show you how little I was actually taking in. I think that advise is fine for someone like me who cant keep anything else down where its a matter of eating enough calories to sustain you. Once chemo was done and the veil of nausea lifted and I got some of my taste buds back I was back to usual routine
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Going back to exercise. I really do think it's the magic bullet, and 7 years ago, I was about 5 years ahead of the curve realizing its value. I did the short route of the Chilly Hilly that year, even if I had to walk most of the hills. I ate normally. I lost about 15 pounds of weight that needed to come off, a healthy amount. I did the Seattle-to-Portland Bicycle Classic within six weeks of finishing radiation. True, it took some time to recover completely, but I was fit enough to do these events.
Didn't realize that it's 7 years today for me since diagnosis until I read Lago's comments.
My MO and I were just talking and she still struggles with getting more patients to exercise. Deconditioning is no joke, and that is what the study is really measuring, much more than the direct effects of chemo and radiation.
Anyway, more and more studies support the benefits of regular exercise including that it appears to significantly reduce the risk of recurrence. So I am out there doing it. One of the reasons, I do a ton of summer cycling events. This year, I have done 9 events of 60 miles or longer. I may do one more in October for an even 10.
The biggest payoff is that I am the 60-something who is able to do a day of cycling and vineyard camping, not the one who is longing for the things she used to do.
Speaking of which, my crunches await.... - Claire
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I absolutely hate exercise. I love working and creating in my art studio. I am slender and happy in my sedentary life. The idea of going outside and moving for the sake of moving is mind-numbing to me. I'll take my chances without it thanks.
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I love taking a walk with DH and doggie! Right now, after 2 hip replacements, possibly related to Zometa, that is my main exercise.
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One of the things that upset me the most about my diagnosis and surgery was missing my barre classes. There is truly no better feeling than the end of a workout that pushes you. I do some workouts at home but am just about ready to get back into the studio. (I was too vain to go to classes before my hair at least grew to a pixie.). Being thin and/or fit didn't prevent cancer for me, so I don't see it as a magic bullet for recurrence or metastasis either, but regular workouts just make me feel better, emotionally as well as physically.
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