Lyphodema

Hi Tess1965 and I see this is your first post so welcome to the community.

I do not have any experience with this but there may be others who have and let’s see if they are looking in.

You may also want post this on both our Breast cancer and Lymphoedema groups as this will widen your opportunity to reach others.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing.

Thank for advice. I will do that, as need to chat with others about lots of things. Anxiety pretty high atm, thankyou so much Tess 

Hello Tess1965,

I had cervical cancer and I had lymphodema in my left leg and foot, which was caused by the radiotherapy. I couldn't and can't wear compression stocking as the give me blisters. I have eventually managed to get my left leg and foot back to near the same as my right. in my case the radiotherapy has caused radiation enteritis and a prolapsed pelvis! I wasn't told about any of this before, during and after treatment. I was lead to believe I would be back to my old self. Instead I have two stomas, a fistula and I have chronic fatigue. I am so grateful and thankful I have been given the all clear ((yay and thank you) and I have been discharged from the cancer hospital (yay and thank you) but I am annoyed that I wasn't told or informed of anything. Plus the aftercare and support is non-existent too.

Fingers crossed for you scan and you will be good.

Love and good vibes,

x

Hi Lisa, OMG, you've been through so much & I'm so relieved to hear that you have won your battle with both Lymphedema and cancer, but what a journey you've been on. Without knowing what to expect or possibly happen. I'm not sure whether it's because of Covid or is this the normal thing they do, by not giving us the full truth about the treatment. I was told to do exercises with my arm, which I did, when I had time, work, family, mums Dementia, to then be told he Radiotherapy had caused another chronic condition, I could have cheerfully screamed, but walked out of the hospital in a daze, went online & thought IV only got a few years to live. Devastated. Conflicting info from medics, nurses. Iv been told I have to go for a PETscan next, so I will have a definitive answer. I'm just praying it's a blocked Lymphenode & will sort itself. Your right about the lack of advice, I was angry at first, but I guess if they told me the truth I might have refused the Radiotherapy, IV refused the Exmerstane because of the side effects, shortness of breathe, joint pain. Yes the medication blocks production of Estrogen, but it made me feel so poorly. Unless it was the Radiotherapy working out of my system. I think I just wanted to feel normal & happy again, not have cancer, lymphedema, breathing problems. I'm hoping the physio I'm doing is working, but it's a life long condition, so I'm doing physio everyday atm & trying to lose weight, work full-time, family life, kids, grand-kids. It's all overwhelming some days. Youve been through so much more than me & The Highlander too, i should try and be a bit more positive. Sending you so many best wishes & love. Xx

Hi Tess1965,

Thank you for your reply and boy you too have been through so much too.

 I thought the same as you, they don’t tell people about the after effects because some may decline it. I think that is down to the individual but I also think they need to make people aware of the possible side after effects, long and short ones.

 I am so happy to be given the all clear and being discharged from the cancer hospital (yay and thank you), I sometimes get upset because of the radiation enteritis and prolapsed pelvis.

Fingers crossed for yourself and let’s hope it is a swollen lymph node which is causing the latest problem.

You mentioned about Mike Thehighlander and myself being through a lot; you have too and of course, you are worried and there is always someone in here willing to help and have a chat.

Love and good vibes,

x

I had womb cancer so a full hysterectomy and removal of lymph nodes with resulting lymphoedema in my lower legs. It seems that’s the price to pay for getting rid of the cancer. I’m managing it with compression stockings and I’ve accepted this is how it’s going to be. I just tell myself it could have been a lot worse. Hope you find some solutions x

Hi Tess I had IDC er+ her2- grade 3 stage 3 in 2018 had lumpectomy and node clearance right side had 15 radiation now on tamoxifen was supposed to have all clear this year as it’s my fifth year but calcification were found near to original cancer site so will be staying with breast clinic for at least another two years and have to continue taking tamoxifen, I also had lymphodema and do daily lymphatic massage with help off hubby my breast and arm are effected but it is kept under control by massage my arm from shoulder to elbow is still numb but the shooting nerve pain is the worse also really bad pain in the breast I suffer with fibromyalgia and other conditions and since cancer haven’t been able to get my energy back I have had to learn to live a different lifestyle it’s an ongoing struggle 

Hi Lisa I’m up in Port talbot and had breast cancer in 2017-2018 had lumpectomy unfortunately it had gone to the lymph nodes so had node clearance on right side, fast forward to July this year had to have hysterectomy for a mass in my womb luckily it was pre cancerous and no further treatment I’m having terrible sharp pains in my right side feels like being stabbed with something hot and sharp that’s the only way to describe it also have urgent bowel and painful to open my bowels due to a herniated rectal prolapse, I have pain from both surgeries which I was never told about I have fibromyalgia and b12 deficiency and terrible fatigue I sleep but never feel refreshed I wish they would warn us of all the nerve pain so we are prepared I find it hard to do the simplest tasks xx

Hi welshlady07,

Thank you for your reply and sorry I have taken a while to reply to your message. 

I am sorry you have been through so much and I am sorry for everything you have going on.  

I worry a lot, I get good days but I worry over everything which has happened and how I am now. Sometimes I feel like I am on a merry-go-round.

As my name says, I live in Cardiff and I am here for you, when or if you need a chat.

Love and good vibes,

That’s okay after having cancer we have to get used to the us it’s both mentally and physically draining , I do think whilst we are going through treatment we think once it’s over we will be back to normal but that is not always the case our minds overthink things also then we are put on hormone suppressants which can cause other side effects but we are strong and do get through it