Thinking of you @patsrn. None of this is easy. You’ll feel better about your decision, whichever way you go, by thinking it through in the way you’re doing. We’re all routing for you.
Just one final thing (like Columbo )… I’ve not heard that stat previously of 1 in 100 ppl dying of chemo. Be careful of stats (even the tailored predict ones) as by their nature they are all based on old data from the general population, so can paint a more gloomy pic than yours would show.
My oncologist really hammered this into me on the stats. If you’re in reasonable health anyway, which it sounds like you are from first message, are not very old and are active (no idea on this front) I understood from him the stats are better. Plus treatments are improving all the time, therefore so are outcomes and patient experiences. Us guys on here are the living stats.
Hi. Rambles do help! I just visited with my primary doctor and have decided on the radiation, chemo is still undecided. For me, I am almost 63 and am still working as a nurse. I am so scared of getting "chemo fog.’ I can’t care for my patients if I can’t think straight. I wish we had the counseling here. Seems in the states educating patients on what to expect and specific counseling for this situation is very limited if available at all. You guys have been my support and I graciously say thank you!
Hello my friend! Thanks for responding. I am still up in the air on the chemo, talked with my primary doctor and have decided I would do radiation. I am still trying to deal with all the side effects of the surgery (post mastectomy pain syndrome, the muscle issues, strength and movement) so have to get past that. Plus image issues. Being quite overweight, loss of the boobies I look like a 9 month pregnant 62 year old woman! Concern about the COVID issue, I do hope you are better. I am a nurse and really do want to get back to my patients, but flu and COVID isa concern
I am in the states. It seems you guys in the UK are much better educated by your caregivers than we are here. Prior to surgery the only education I received was when I asked questions and answers were limited. Now after surgery, waiting to heal so I can move on to radiation, I feel pretty much abandoned. I am grateful you guys have the care you have. To my advantage my son is a nurse also and has given me loving care. Hugs to all!
No. My insurance dictates where I go of course. The hospital is not the issue, but the treating cancer center is. My treatment with this given group was not the best with my first cancer, a lot of the same issues. I did not want to go back, did a lot of trying, but ultimately has to go back. I really think it would benefit for them to set up a program where new cancer patients go to meetings to educate folks on what is going to happen what to expect, how to treat. Between the hospital, the surgeon and physical therapy I have been given so much conflicting information I am not sure what I should be doing. For example, going back to work, after a double mastectomy, the oncologist asked me why I could not go back to work just tuck my drains in my pockets. Physical therapy tells mee to be out at least 8 more weeks. My apologies I know this is not meant to be a sounding board fory issues, just a lot of frustration along with the pain. I am REALLY happy you are getting the care you are. Truly. Thank you for listening. Pat
I looked up a NCI hospital near me. It’s Mayo. That’s a big NO on our insurance. I have been there for other health issues. They are AMAZING. Good for you! ,
I am so sorry your insurance doesn’t allow you to go to the best. NCI hospitals have teams that look after you so one person isn’t going to contradict the other which of course makes everything run so much more smoothly. Plus I have found their education system is flawless. I hate that you can’t take advantage of that. And I have never heard of an oncologist suggesting someone should go back to work with drains in. I mean who wants to see that?? We don’t even want to see it much less our poor co-workers. Plus we’re suppose to be resting so that the draining slow downs. The more you move, the more fluid builds up which lengthens the healing process. You at least need to be out of work until your drains are out and it usually is a little bit longer for most people. It’s a double amputation and major surgery. That seems like a really misogynistic comment from your oncologist. Like we’re women and losing a body part shouldn’t affect us all that much. For the record I had a pitch perfect recovery from my double mastectomy and work part time from home. Was out completely for two weeks and only started working after my drains came out but I was at home on my couch. Anyway I’m rather furious for you but we all know we’re slaves to our health insurance companies here. If it’s a good one, it’s very good. If it’s bad, it can be very bad.
I beg to disagree. ‘Our’ NHS as it is laughingly called is completely dysfunction and grossly inefficient. In addition, cancer outcomes are the worst in Europe. We need to stop clinging to the ideal of a health service that was maybe viable 70 years ago but is now way past its sell-by date. The sooner we move to an insurance-based system, the sooner we can start to see treatment improve.
From what I am hearing and seeing, regardless of the system, it is hit or miss on your care. Your care is still dictated by a system. I had a discussion with someone here in the states today. Her insurance allowed her to go to a NCI hospital, mine does not. She is well in her way to recovery, I am questionable. Different system, yes, better…eh. I do wish everyone the best.
. None of this is easy. You’ll feel better about your decision, whichever way you go, by thinking it through in the way you’re doing. We’re all routing for you.
)… I’ve not heard that stat previously of 1 in 100 ppl dying of chemo. Be careful of stats (even the tailored predict ones) as by their nature they are all based on old data from the general population, so can paint a more gloomy pic than yours would show.