Off The Net And Not Posting For 10 Days! Later!

GUY’S GOTTA TALK ABOUT…#5

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…

 

So – I will be doing GUY’S GOTTA TALK, Breast Cancer Research NOW!, and Breast Cancer Wisdom on a bi-weekly basis. The archives will be up for as long as people search them out.

So – there’s nothing to talk about this week as breast cancer in my life has been subsumed by issues of dementia, elder care, hip-replacement recovery, and sibling communication.

 

Thanks for visiting.

 

Image: http://wrex.images.worldnow.com/images/23784252_SA.jpg

DOES GUY REALLY GOTTA TALK ABOUT BREAST CANCER ANY MORE?

Looking at the statistics for this blog, I notice immediately that the posts that get the most hits are the ones specifically journaling my research into the various aspects of my wife's treatment for breast cancer.


THE most popular post right now is, of course, "Lymph Node Excision and Mosquito Bites..." because here in the northern tier of States, it's mid-summer and mosquitoes are a part of every night life. Lymphedema is a part of every day life for many survivors and when you combine the two, the information about the overlap is pretty scarce. So people come here.


Following the bugs and nodes post at a close second and third place are the ones on Brain Cancer (which many people check out whenever they have extended periods of headaches) and the one on Easter Reflections (and the only reason that gets so many hits is because it highlights a famous "BC" Easter comic strip cartoon).


Writing this blog takes up a bit of time and while I don't grudge it, I wonder whether I'm spending my time wisely. I only have so many hours of writing time. I wonder if this is a USEFUL exercise for me or if I'm just wasting time doing it.


So, I am thinking about no longer posting weekly -- and perhaps no longer posting at all. The environment of men talking about breast cancer hasn't changed appreciably since I started the blog. Certainly no men have contacted me expressing similar experiences. There's been no groundswell of support or plans to create a more supportive environment for men who move into a caregiving role as their wives/girl friends/lovers/partners/parents/brothers/sisters go through breast cancer treatment.


In addition, my parents have moved into that time of life where they are growing weaker and less able to care for themselves with ease. I spent the past four nights at my parent's home with my dad while my mom recovers from hip replacement surgery. And she's not recovering quickly or without complications...


At any rate, I may fall back to posting every other week. Maybe only once a month. We'll see. Certainly I'll let you know.


Image: http://images.nationalgeographic.com/wpf/media-live/photos/000/006/cache/mosquito_634_600x450.jpg

BREAST CANCER RESEARCH RIGHT NOW! 21: Do You Have A “Survivorship Care Plan”?

From the first moment my wife discovered she had breast cancer, there was a deafening silence from the men I know. Even ones whose wives, mothers or girlfriends had breast cancer seemed to have received a gag order from some Central Cancer Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this blog…

Every month, I’ll be highlighting breast cancer research that is going on RIGHT NOW! Harvested from different websites, journals and podcasts, I’ll translate them into understandable English and share them with you. Today: (the article) http://www.breastcancer.org/research-news/survivors-need-better-follow-up-care, (the study) http://jco.ascopubs.org/content/early/2014/04/16/JCO.2013.51.7540.abstract

And what exactly IS a Survivorship Care Plan (for brevity, let’s say SCP)?

Hmmm...certainly nothing my wife and I have heard about. Why not?

First of all, the study finds that few oncologists and primary care physicians even KNOW about offering a SCP: “Although a majority of oncologists (64%) reported always/almost always discussing survivorship care recommendations with survivors, fewer also discussed who survivors should see for cancer-related and other follow-up care (32%); fewer still also provided a written SCP to the survivor (< 5%).”

What IS the SCP? According to the article, “The survivorship care plan should include a written treatment summary and a personalized follow-up plan developed by the patient’s oncologist. The Institute of Medicine report also recommends that survivorship care planning include discussions about which doctors (oncologist, primary care doctor, other specialists) should be seen for specific follow-up care.”

In fact, at least here in Minnesota at the breast cancer care centers we went to, NO ONE made any kind of concerted effort to create a clear SCP. Certainly doctors were discussed. Certainly treatments were discussed. But as an example of how...relaxed the post-treatment plan was, a year or so ago, my wife received a post card (or an email, I forget which) advising her to GET A MAMMOGRAM! I commented acidly, “There are no more mamms to gram...”

What do you do about getting an SCP, then?

“After your main breast cancer treatment is done, it’s important to focus on what’s now most important: your good health... [You need to] bring it up at your next appointment. Ask your ONCOLOGIST the following questions, ‘Can I get a survivorship care plan in writing that explains all the medical issues I need to consider and tells me which screening tests I need and when I should have them?’, ‘Which doctor should I see for each medical issue?’” If the oncologist recommends that you see a specialist – a cardiologist for example – and you’ve never seen one before, you may want to ask for a referral to a specific doctor. If you don’t understand something, ask either the oncologist or the nurse practitioner/nurse/physician’s assistant to explain it to you.

“It’s also a good idea to talk to your primary care doctor about your SCP and ask which parts of it she or he will be responsible for...Because the idea of SCPs is relatively new, you may have to advocate for yourself to make sure you that get a written plan.”

Perhaps this is something you can think about. Maybe it’s something we can do, even though it’s been nearly three  years since the chemotherapy ended. If there WAS a SCP, I don't recall ever seeing it and no one really took the time to tell me that it was something I could hold on to and carry with us.


My wife suggests: a CHECKLIST of things that need be to done/talked about (explaining CLEARLY what "survivorship" means (sounds like what the family does after the breast cancer patient DIES!), ports, lymphedema, breast implants, plastic surgery, compression garments, places to get the garments, plastic surgeons IN INSURANCE NETWORK, surgeons who do breast cancer reconstruction, nutritionists, help lines) someone at the hospital who explains everything; someone to actually LISTEN...) Want to add anything?


Image: http://about.medstartr.com/wp-content/uploads/2013/06/MCP1.jpg