Lyphodema

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Hi, I'm new to this so apologies if I go on. I had a lumpectomy & removal of some Lymphnodes in 2020, now been diagnosed with Lymphodema in my right breast. Ongoing physio at home, change of lifestyle, no Caffeine, herbal teas, gone gluten free for joint pain. It's worked for me. Overwhelmed with this new diagnosis, as rang the breast nurses about lumps in breast, but they said it's normal & due to the Radiotherapy. Not blaming them, Covid has complicated everything, 40,% of women get Lymphedema after treatment, so it's fairly common. Just conflicting info from nurses, Dr's, my own Dr. I'm in overload from that & reading too much on the Internet. I thought once the tumour had gone, treatment finished, then I would be back to fighting fit, or at least working on it, but feel very drained with everything. Along with mum in a Dementia care home, a bit easier since she moved in there last June. Life long condition that I will have to deal with due to Radiotherapy, fix one thing & create another health issue. Going Breast clinic Friday as another lump detected during a routine scan on chest, I'm praying it's a blocked lymph node. Xx

  • Hi Welshlady07, sorry for late response, struggling to find time to get on here, work full time etc. It is ongoing, I'm a bit shell shocked as thought I was all clear after op, then only because I insisted on face to face appt, discovered the Lyphodema. Rheumatoid Arthritis condition & now flare ups of Pericarditis. Bless you, fantastic that you have your husband's support. I too found IV no energy anymore. I used to buzz around housework, work, gardening etc, not anymore, same as you, health issues & pain have taken over my life. Waiting for results of PETSCAN, hopefully next week. Another ECG Monday & breast clinic on Weds. Bless you, stay strong xxFingers crossed

  • Hi Lisa, struggled to get on here to check replies, just as well you weren't waiting for an answer. Work, family life, appts, fatigue. I think I was a rabbit in headlights. Second time round, I may have refused the Radiotherapy & taken the hormone therapy for 5 years. Anyway that's not an option now, so just waiting for results from PETscan next week. Also having another ECG on Monday as Dr thinks my chest pains are pericarditis, complication of Rheumatoid Arthritis, I'm tired all the time now, but trying to stay positive for my daughter's & grand children, they are my world. Bless you, it's a relief to talk to people that understand my need to go bed at 9 most nights, don't have energy for lots of things. 

    Stay strong lovely, we will get through this & after reading yours and others stories, no that I can still have a level of life to enjoy if I'm kinder to myself. 

    Duvet day tomorrow, weather's rubbish, music is my saviour, so relaxing. Lots of hugs xxxx

  • Hi ,

    Thank you for reply and don’t worry about being late to reply, I fully understand.

     I hope everything is well from your PET scan. It is horrible waiting for the results and I won’t insult your intelligence by telling you to be positive! Which got on my nerves when I went through treatment and that’s putting it lightly. I am sorry you may have pericarditis. It don’t just rain, it pours. 

    I was (and still am) annoyed that I wasn’t told or even made aware of any after effects. At least, I would have been aware and I work have had treatment. 

    Yes, it is lovely to speak to and read others posts and there is plenty of kindness on here.

    I hope you enjoyed your duvet day.

    Sending you love and good vibes 

    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx 

    Lisa

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  • Hi Lisa, thankyou lovely. IV got the results for PETscan tomorrow morning. My grand children are keeping me sane atm. It's like being on a roller coaster ride you never signed up for. It is comforting knowing that others are dealing with similar issues. Wonky boob & having to wear spaghetti foam everyday in the hopes of moving the Lymphedema away. Thankyou so much for positive vibes, I will carry them with me in the morning, hugs & positive vibes back to you too. Xxxx

  • Hi ,

    Thank you for your reply and I am sending you good vibes and fingers crossed for your results. 

    It is horrible wanting for any results, however I am glad you have your grandchildren to keep you sane.

    Please let us know how you get on and I am thinking about you.

    Sending you love and good vibes,

    Lisa x

    Lisa

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  • Hi Welshlady07,,,we have been through similar cancer, treatments etc. I have found the after effects, Lymphedema, numb feelings, difficult to deal with. Not prepared to deal with it at all. Very little advice from medics, I honestly believed I'd be back to my normal self. No, it's been a massive life change for us. One day at a time, we can't cope with all this alone. Results of breast biopsy on the 25th Feb. Birthday on the 28th, I have a deep dread that it's back & more treatment & another op coming. The waiting is awful. I will be asking more questions on Friday, side effects etc. We need to be prepared what to expect. Good luck & keep talking. Xxx