QuoteReplyTopic: BC treatment issues may linger for years Posted: Apr 10 2012 at 9:14am
Breast cancer treatment issues may linger for years
More than 60% of breast cancer survivors report at least one treatment-related complication as long as six years after their diagnosis, according to a new study.
"Our work provides the first accounting of the true magnitude of the post-treatment problems suffered by breast cancer patients, and serves as a call to action for proper monitoring and rehabilitation services to care for them," Kathryn Schmitz, PhD, MPH, Perelman School of Medicine, University of Pennsylvania, an associate professor of biostatistics and epidemiology who serves as a senior scientist on a committee overseeing creation of a surveillance model for breast cancer survivors, said in a news release.
"We can no longer pretend that the side effects of breast cancer treatment end after patients finish active treatment. The scope of these complications is shocking and upsetting, but a ready solution for many of them already exists in rehabilitative exercise."
Schmitz, a member of Penn’s Abramson Cancer Center, said previous studies to determine the prevalence of post-treatment complications typically examined only one issue. The new findings provide a full snapshot of the complications women may experience following chemotherapy, surgery, radiation treatment and hormonal therapy.
The results revealed these problems rarely exist in isolation. For example, many women with lymphedema also may struggle with fatigue and bone-health challenges.
Schmitz collaborated with an Australian research team to follow 287 Australian women with invasive, unilateral breast cancer for a median of 6.6 years, prospectively assessing the women for treatment-related physical and functional complications at set points throughout the study. Areas of study included post-surgical complications, skin reactions to radiation therapy, upper-body symptoms and functional limitations, lymphedema, weight gain and fatigue.
At six years after diagnosis, 60% of the women continued to experience one of the problems, and 30% were struggling with at least two issues. Most of the problems appeared within the first year of assessment, with the prevalence of most impairments — except lymphedema and weight gain — decreasing over the course of the study.
Writing in the lead editorial of a special issue of the journal Cancer, Schmitz and her colleagues outlined the myriad barriers that lie in the way of properly monitoring breast cancer survivors for the problems uncovered in the new study. Patients may have fragmented care, receiving different prongs of their treatment at different hospitals; patients and providers may believe certain problems are "expected" and "normal" and not appropriate for treatment; and, unlike orthopedists and cardiologists who frequently send patients for physical rehabilitation to ensure their complete recovery, oncologists and surgeons are often poorly linked to physical therapy professionals, limiting the number of patients who are aware of or referred for these services.
In the face of these challenges, an expert panel laid out a model for prospectively surveying breast cancer survivors and formally incorporating rehabilitation and exercise experts into cancer survivorship programs. Research increasingly shows that post-treatment complications can be minimized or prevented altogether when caught early and addressed through various rehabilitation regimens.
The American College of Surgeons Commission on Cancer has published guidelines that will require all accredited cancer treatment centers to provide treatment summaries and survivorship health care plans to all patients by 2015. The proposed surveillance and rehabilitation model could serve as a framework for meeting those pending guidelines, the researchers said.
"In the meantime," Schmitz said, "breast cancer survivors should be empowered to ask their doctor for a referral to physical therapy and exercise programs."
I've long felt that post treatment symptoms were treated kind of like the good old days and the perspective that women with menstrual cramps issues were just being weak or imagining things.
With all the side effect symptoms that we see here it is perplexing that a for-profit system wouldn't jump all over this to offer billable time people to ease us through, but for me that's never been the case. Nada has ever been offered and when I've asked about things to help I generally get a distracted stare back.
From what I can tell, the women here have become the best advocates for our family's health and we are surely the better for it.
I finished Chemo 31/2 years ago and I still have fatigue...although with time it seems to have gotten somewhat better, I am always exhausted by about 6pm. I also take breaks throught the day just to try to recharge. I know that part of the problem is that I have gained about 15 pounds since being thrown into menapause by the chemo (I was 46 at the time). I struggle to get any exercise and I never used to be like this. I took 6 rounds of A/C... I am wondering is anyone else has had similar issues with fatigue this far out or if it's just me.
thank you for posting this Donna. I finished Taxol (10) and Abraxane (2) 3 weeks ago. I have such a bad case of neuropathy in my toes, I can't even feel them. I always told the oncologist about it, it started to get worse after the 20. Taxol. Then at the last Abraxane I told the nurse, she said I should try a Vitamin B Komplex, but will not see any results for 6 weeks.
Sabine
DX TNBC 7/11 @ age 50, Stage 2A Grade 3, 1/19, LE/AD 8/11, BRCA1/2 neg., 4 A/C, 10 Taxol, 2 Abraxane due to allerg. react. to Taxol, fin 3/12. 33 Rads 6/12. NED CT 8/12, 10/13, 10/14
Hi Donna, Well, all I can say is that I never ever thought I would still be dealing with what I am after treatment. As you know the Radiation was the factor in what I have had to deal with. The problems with the skin started shortly after treatment ended. The repeated Cellulitis alone was awful and the ensuing Mastectomy and then the hemorrhage and repeated surgery for that...I wonder if it will ever end. The wound is healing well and almost closed so it is now safe for Physio which I am now receiving. I can see good results with that already. I am exhausted from it all. I know the oncologists explain most of all the related side effects that could occur but we all hope for the best. I do not regret having the Radiation as it was a treatment option that in my case was necessary. It was explained to me that 1% or less of us will experience tissue damage that would cause a Chronic Cellulitis condition so do not be alarmed out there...it is a rarity.
Thanks for posting the article as I think it really helps. Most of the people I know or they know of someone that has had breast cancer and ensuing treatment have been perplexed by my problems after treatment and believe me educating them on it is frustrating as they seem to think it is related to countless things like cancer recurrence, bad surgeon, etc. etc. I am tired trying to explain.
Thanks again and take care...Love, Annie
Annie TNBC Stage IIA Gr 3 1cm lesion 2/5 lymph nodes+ lumpectomy,FEC & D 30Rads finished(08/2009) BRCA- Chronic Cellulitis due to Radiation-- L.Mastectomy Jan 2012
I never wanted to be a downer for those newly going thru tx. I am not sure if I just got used to some things or they went away. The fatigue was hardest. Then the aches and pains. Oh, and how much I've paid for dental bills ! I would hear people talking about "the new me" but only wanting the me I knew, back. I knew for my own sanity I needed attitude adjustment in letting it all go. Somewhere, not sure if it is "the new me" or I got used to who I am.....but it is many years later. Like Jody, being thrown into menopause at the time of chemo, it is hard to know coming out of tx.....is it treatment, lack of estrogen, just being older???? Fortunately life goes on. The chemo brain is real. I think I just got used to not being quite so quick with words. No body ever noticed it....but I did. It is real. And now, I rarely think of all these issues.
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