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Weight loss question

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Hi All

I’ve been a member here for 20 years and 2 years ago I had my 4th BC DX. My recurrences have all been locally advanced, the latest grade 2, initially inoperative, though eventually after shrinking with Palbocyclib it was removed lat September, but path showed perineural invasion and prob lymphovascular invasion.

(Nb I was taken off palbo as it caused severe recurrence of my ulcerative colitis and breathing probs).

I am now only on Exemestane and at extremely high risk of both regional local recurrence again and of course mets. Felling pretty good at the moment tired but a serial insomniac, so sleepy rather than exhausted!

However, since December I’ve lost 9lbs in weight or 4 kg to 60kg with no obvious change in diet. I had a CT 8th Feb 2024 which was clear, so thought loss at time was from gastric ulcer which cured by end of Feb, however weight loss has continued…

I’m loving being the weight I was 20 plus years ago though I can’t help wondering!? I know it’s prob going to come back (I’ve learnt to live with it) , but just wondered if anyone else got DX’d with mets from weight loss alone?

I really generally don’t about mets as SO used to being at risk, however I’m wondering at what point I should report? My next scan isn’t til August!

Thanks in anticipation


Nichola

Comments

  • salamandra
    salamandra Member Posts: 736
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    I think you should report. Any unexplained weight gain or weight loss is a concern, even for women without a cancer history. If you're more comfortable reporting to your GP or OB/GYN, that's still a good start, although considering the cancer history they may anyway tell you to check in with your oncologist.

    For me, I really like using the online health portals to communicate with my doctors about stuff like this, and then let them tell me if they think I should come in for an appointment or what labs, etc.

    But if you're ever not sure of reporting, anyway it probably makes sense to err on the side of reporting, if for no other reason that move the problem out of your head alone and share it with the doctors who get the training and salary for this stuff.

    (Hopefully the lack of replies here indicate that few if anyone has met the conditions of your question - being diagnosed with mets from weight loss alone! But it's still my understanding that unexplained weight gain/loss is expected to be reported because it may be an indication of something else that's wrong, hopefully something very treatable if so!)

  • malleemiss251
    malleemiss251 Member Posts: 228
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    Hi, @nichola, I would report straight away. Going to my GP because of weight loss was how my cancer and de novo stage iv was diagnosed. As it turns out, my weight loss has nothing to do with the cancer, but it is a key sign for a lot of people. If nothing else, you will get peace of mind, cos that question will always be nagging at the back of your mind.