Living with Lymphoedema and now a new health issue

Hi...I was diagnosed with lyphoedema in both legs last October ...and am doing very well with weight loss which has benefited the lyphoedema no end...but now I have another health issue...was diagnosed with Endometrial Cancer last Thursday...and had a chest x-ray today and am booked in for an MRI at the end of the month to see if it has spread outside the uterus.. I will be having a hysterectomy once the oncology doctors have discussed my case...I can tell you I am SCARED

14 Replies

  • Hi Ronlin77

    So sorry that you are having such a hard time. thoughts are with you

  • Oh honey! Bless your bravery for sharing? May i please ask if u sont mind answering how were u diagnosed? U can pm me if u like! Ive primary on one leg

  • Hello Ronlin

    You are really having a rotten time at the moment,I send my sympathy and wish you luck - with good oncologists you will soon be smiling again. If you need someone to chat to feel free to PM me take care xgins

  • Do hope all goes well with you - thinking of you

  • Hi, I am so sorry to hear your news and you have every right to be scared because at present you are probably thinking the worst and you don't have all the facts. The most important piece of advice I can give you is to be happy with your oncologist and be sure to tell them your concerns about lymphoedema.

    I suffer from primary lymphoedema in both legs and was diagnosed with cervical cancer in July. I am to undergo a radical hysterectomy next wed (18th) at a hospital that is not local but with a gynecology oncologist that I am really happy with. My local consultant wanted to remove all pelvic lymph nodes as a matter of course and I was so afraid of my lymphoedema getting worse I questioned whether there was an alternative. The upshot is that I am now under a different consultant who will perform a sentinel node biopsy to see if all nodes are affected but not only that the procedure may be carried out by laparoscopy (keyhole) which is less intrusive. This would not have been the case if I had the procedure locally.

    If you want to message me direct I am happy to talk further and give you advice on a cancer charity that I found helpful and also books etc. There is no greater shock than to be told you have cancer so I will be here to support you too, if you want. Now you are "in the system" you will not be better looked after.

    Take care,


  • Hi Ronlin and Colly, thank you for sharing your stories and just want to wish you both all the best for your surgery and recovery from the ops. You are brave women.

  • oh ronlin, i'm so sorry to hear your news

    macmillan are probably the best support source for uterine cancer - you probably know that by now, but they've got loads of information & their helpline's brilliant

    & i couldn't agree more with conlin - find a team you trust who understand about the lymphoedema as well, ask them to get help from prof mortimer's team if they need to, make contact with the team's cancer specialist nurse

    & you'll be needing a few good sobs - have you got people around to give you a hug? have a cyber-hug from me, life's just really not fair sometimes

  • Thanks so much for your support.. I have had my chest x-ray and will have an MRI on September 30th to check and see if the cancer has invaded other organs...then the oncology team will plan my treatment ...the first being a hysterectomy...which by my reckoning should happen around mid to late October. I will be definitely questioning the doctors re the Lymphoedema...I have already notified my Lymphoedema therapist and she wants me to let her know what the doctors plan re the hysterectomy ..if they are doing anything with the lymph nodes as that could well impact on the lymphoedema in my legs

  • Hi Ronlin,

    I'm home from surgery, op was last wed and I came home on Monday. My surgeon injected radioactive dye into my cervix to enable him to detect the sentinel nodes whilst I was under anaesthetic. When I came round I was told that they were unable to detect any sentinel nodes as the dye was not draining so they removed a number of lymph nodes. On the positive side though it means the cancer may not spread, I will find out in a couple of weeks. I guess this also explains why I get lymphoedema in my legs too.

    Hope you are feeling a bit more informed about your situation, be positive and strong. We are here to support you.

  • Oh bless you!!! I wish you all the luck in the world Ronlin 77!! May God keep you safe......XXX

  • I wish you the very bust of luck and a good outcome for your treatment

  • Thanks ladies...

    I am glad you got an oncologist you are happy with Colly...

    Time is getting closer for the MRI....I was given a copy of the ultrasound I had done in June so I put it on my computer and did see there were a number of polypy thingys on the uterine lining which I guess is the cancer...and there are some on the right ovary which is concerning...BUT I will wait til the oncology team read what the MRI produces on Monday before I get REALLY SCARED...I did ask the surgeon if they could repair my umbilical hernia at the same time they do the hysterectomy and that has been ok'd...

  • Hi ladies...I had the hysterectomy and umbilical hernia repair on November 5th and am recovering well are out and I am back to my daily waking regime...just waiting on the results....which should be in a few days...I am hoping that I don't have to have any on-going treatment...only funny thing is I don't have a belly button any more cos the surgeon told me it was better to remove it in doing the hernia repair and now there will be no chance of any problems of another hernia there...


  • Hey there hope you're ok, haven't been on here for a while, I myself had a radical hysterectomy as I had cancer of the cervix. This was all done via keyhole. I had my lymph nodes removed, I suppose I was naive as to what was going to happen and primary concern was getting rid of the cancer in my mind. It was only after quite some time after my operation that I started with my lymphoedema and of course how dreadfully it affects your every day life. I had never heard of it before and it's been such a struggle dealing with this in the end I sought a private nurse who used MLD and massage to take the legs down which was really successful but boy what a journey. Even my local Boots couldn't process my prescription from her for bandaging/wraps. It was all a very long and drawn out process! Anyway hope you are on the mend, and looking after yourself x

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