Hello all I just put this question on the lymphoedema category but thought i should put in under surgery too to get maximum feedback!!
I am 25, normally very fit and healthy and have almost finished 3xFEC and 3xTAX, last one on 31st October! My mastectomy is due on 2nd Dec but due to questionable nodes on biopsy don’t know what they will do with them. I am likely to need radiotherapy 3 months after surgery.
Now, my brother lives in Australia and I have the opportunity to go and visit him and his family, (free flight!!!) but has to be taken before february. So my questions are these:
Is it crazy to think i will be ready to travel 6 weeks after surgery?
Is it puting me at unnecessary risk of developing lymphoedema? And is this risk higher depending on how many lymph nodes need to be taken.
Will this risk decrease with time post surgery or is it always going to be there?
I would really like to go but equally if it is a crazy idea then I definately won’t. Peoples personal experience and opinions would be great
Thank you
charlie
Just thought I’d post my answer in both places, too!
Lucky you, with a free flight to Oz on offer!
What a lot of questions! To take them one at a time…I flew to NZ seven weeks (they told me six weeks was the absolute minimum - I would check with your docs) after a hysterectomy with no ill effects. A MX is minor compared to that, so that’s a plus point.
But…when lymph nodes are involved…there is good anecdotal evidence that flying can cause or worsen lymphoedema due to the reduced cabin pressure. But people with lymphoedema (like me) don’t give up flying, and people liable to develop it are becoming more aware of the triggers and how to avoid or minimise the risks. I would do everything you can to be fitted with a compression sleeve to be worn prophylactically on the flight - this is about the single best thing you can do for your arm. If your bcn is on the ball, she should be able to tell you how to get one (you may have to get it privately, depending on what your local NHS lymphoedema services are like) and arrange for you to talk to your local lymphoedema nurse/clinic. Prevention is the ideal - lymphoedema remains incurable, though not untreatable.
If that fails, I would say to… try to break your journey somewhere (Singapore?) for 24 hours, so your arm gets a break at sea level - a swim would be a tremendous bonus for it. Get the best seat you can afford - an upgrade to business class does wonders for ‘at-risk’ arms - but even an extra leg-room seat in economy or economy plus will give your recovering bod a bit more comfort. And the usual…drink plenty of fluids, move around as much as you can (that’s so easy on a plane!), deep breathing and shoulder rolling help to keep lymph fluid moving.
Even people who have SNBs have been known to develop lymphoedema, but the risk is thought to be less. It rises considerably (by about a factor of six) if surgery is followed by radiotherapy. The average time for onset of lymphoedema is about two and a half years post treatment, but the risk remains for the rest of your life. There are plenty of people posting on here who have developed it years later and recent research has shown that, of a group of breast cancer patients 49% had lymphoedema 20 years down the line. More long term survivors = more lymphoedema (though not necessarily more help or treatment available) .
Sorry if all this sounds depressing. Don’t be upset by it! I’ve got lymphoedema in both arms and I don’t fear flying - have done plenty of long haul - it doesn’t actually seem to bother my arms that much! I personally find the hard unyielding armrests in airline seats much more of a problem for my arms than the reduced cabin pressure.