Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
Has your treatment line changed since you completed SBC & Me last year?
In terms of SBC treatments no it hasn't, so 2.5 years on I'm lucky to be still on my first line treatment of Palbocicliib (75mg), Letrozole and Denosumab. I've changed my pain relief though (I have spine mets), from low-level opioids (co-codamol), to a drug called Nefopam which is currently working very well.
How are you coping?
OK, so my SBC diagnosis came 25 years (yep!) after primary, so needless to say, it came as quite a surprise! What I didn't know then, but do know now is that with the hormonally driven primary breast cancers, stray cells not previously mopped up by chemo have a nasty habit of hibernating &; for very long periods, and then becoming active again - This is exactly what happened to me.
As a (now retired) Psychologist and researcher, I'm always a bit wary of the term "coping"; because in the cancer world, if you don't have a positive mental attitude (which I don't), then you're classified as not coping! So suffice to say, I think I do okay.
Above all though, I don't accept that this disease will kill me, so I don't plan for my end, I don't think of living as making memories, and I have not put my affairs in order. Nor will I.
Do the side effects affect your life daily? If yes, please explain
Yes they do, and the culprit is primarily Letrozole. So I'm stiff, my joints don't bend as well as they used to, and I get mega hot flushes (at 67!!!). However, I compensate, as I think most of us do. As examples, I used to run, I now walk with my beautiful dog. I used to cycle, I now have an ebike. I used to swim a decent old lady breaststroke&; but that hurts my back nowadays, so I'm re-learning front crawl and backstroke.
Have you found a routine that works for your everyday life? If yes, please explain
Not really, I tend to take each day as it comes. Some days are very full, others not so.
Do you feel anything is missed when it comes to living with secondary breast cancer? Medically or Socially
I am following a four-pronged approach (termed & integrative), with regard to my cancer, which comprises four components - (1) The unholy triad of Western medical treatment (surgery, radiotherapy & biological therapies) (2) Off-label drugs (drugs not traditionally used in cancer care but known for their anti-cancer properties), (3) Exercise - Always, and (3) Diet.
Integrated approaches such as this have ever-growing prominence at Oncology conferences & in publications, and are the way forward in my opinion. Let's face it, I was diagnosed nearly 30 years ago with primary BC, and the terrain, sadly, has not changed all that much.
Socially - Oh my goodness yes!! There is a massive need for public education about secondary breast cancer, as opposed to breast cancer. The former is the one that kills. #endof
Have you treated yourself to anything since your diagnosis? If yes, please explain
Oh yes :) I changed my "sensible" Peugeot 108 for an angry-looking, ugly, bright yellow Fiat Panda - My husband, who was a mechanic, is likely turning in his grave!! However, it's been a game-changer for me as it has the best lumbar support of any car I've ever driven (and at my age, there have been a few)!
Also, I booked myself my first "solo" holiday since my husband passed just prior to my SBC diagnosis... I drove 350+ miles in the above "angry Fiat 039"; which even a year ago, I wouldn't even have entertained. My daughter and grand daughter visited for the first few days, which was just glorious time together.
Has it changed your perspective on life? If yes, please explain
No. Why would it?
Oh, maybe I've changed from "Can't/Shouldn't, to "Can/Should"
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