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lymphoedema

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Ren
lymphoedema

Hi,

I had Cervical Cancer, lymphnode involvement  stage 3b. I had a radical hysterectomy with chemo- radiotherapy and 2 sessions of brachytherapy. I am now 3 years clear (as of June 2019)

Turns out I am blistered inside from all the treatment I received, sex is incredibly painful and I bleed during and after. Unfortunately, my oncologist believes that there’s nothing that can be done about it.

 

In July, I was diagnosed with lymphoedema and have been supplied with compression garments for my legs. I’m beginning to find my legs are becoming more painful (nothing excruciating, just annoying, aching). My legs are particularly worse on an evening. I’m tired, more so after exercising. I’ve gained 2.5 stone in the last year, I’ve looked up nutritional information to help with the lymphodema (I’ve basically got to eat like a rabbit) 

 

What I want to know is: will any of this get any better? Is there a way I can manage it better? Is this going to get worse? I’m grateful to be alive, that my son still has a mother, I completely get that I’ve got off lightly and feel ashamed that I’m complaining, I’m just trying to get my head around that this is my life now?

Thanks

Lauren
emmz13

Hey Lauren, 

I’m so sorry you’ve been through so much, It sounds like you are having a terrible time and I can only hope that maybe someone can offer some advice and things begin to improve. 

I only just finished treatment so I can offer no help to you at all I just didn’t want to read and run. Please never feel ashamed of complaining you have been through a lot and massive congrats on kicking cancers butt and being a true survivor!! I think that earns you the right to complain whenever you want to. I have heard lots of people talk about the new normal and I guess that what each of us faces in our future but there must be something that can help you, maybe not in the conventional medicine route but try alternative therapies. 

Massive hugs to you, I hope very much you can find something that may help. 

Love Emma xxx 

May 19 odd symptoms

03/06/19 doctors appt internal exam, said everything looked fine, did smear. 

10/06/19 urgent colposcopy due to HPV positive and severe changes. 

21/06/19 consultant sees 2cm tumour takes punch biopsies. She’s pretty sure it’s cc.

24/06/19 cancer confirmed, grade 3 preliminary staging 1b.

03/07/19 X-ray. 08/07/19 MRI and PET scan. 10/07/19 MDT meeting

15/07/19 restaged 2b parametrial invasion no lymph node involvement.

16/07/19 treatment 5 1/2 weeks chemorads

18/07/19 planning MRI 26/07/19 preassessment Chemo

05/08/19 chemorads start

11/09/19 chemorads end!!!! 

16/09/19 Brachy

19/09/19 DONE!!!! 

Petesdragon
Petesdragon's picture

Hey Lauren,

Sorry to hear about your troubles. 

I think there must be things that could be done for your sexual issues. I have had total pelvic exenteration and had my vagina removed. I had a new one built from a flap of my thigh. So if they can do that for me I think there must be things they can do for you too. I would ask for referral to a plastic surgeon to see what they can offer.

Regarding the lymphodoema. I have this and I have something called oscillation therapy once per month with the lymphodoema  and wear compression garments. It is supposed to at least prevent it getting worse.

Have you had any counselling to help address some of the issues you have been through? It can be very helpful.

Karen x

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Jazza
Jazza's picture

Hi Lauren

My treatment was similar to yours, albeit I was a stage 2a with no lymph node involvement.  I am 2 years NED (no evidence of disease) as of May 2019. 

I have a number of side effects from the treatment and I can totally relate to the difficulties of accepting/adjusting to how they can affect a life.   'It's a work in progress' is one of my favourite phrases, these days.

I developed lymphoedema, in one leg, shortly after my treatment finished May 2017.  I wear a compression stocking every day but, like you, my leg gets worse by the evening - elevating my leg definitely helps.  I started off with circular knit stockings but, because my legs were generally getting more swollen and achey, I was prescribed with a custom-fit flat knit stocking.  If my leg gets injured/bitten then I'm fastidious with cleaning/antiseptic/anti-histamine/covering the wound to reduce the risk of cellulitis. If time allows, short sessions of frequent, moderate exercise seem to help me best e.g. walking, pilates. And I'm hoping to get my confidence back to cycle as I've heard it can help with lymphoedema. Vigorous activity and getting over heated doesn't help me.  I'm wondering if a referral to a dietitian might be helpful for your weight control? 

Currently, penetrative sex is off the menu - that works for me.  I used a dilator about 3 times a week for the first year then once/twice a week for another 6 months and now it's about once a month. I only ever got up to the second smallest dilator but then decided to switch to a small silicone vibrator.  For me, silicone + vibration is more doable than hard cold plastic.  I remember the oncologist advising that I should regularly dilate if I wanted to continue with penetrative sex.  I was referred to a women's health physiotherapist and also for psychco-sexual counselling and I found both of them very helpful.  I recently had a vaginal bleed and, after eliminating sinister causes, was advised to regularly use a vaginal moisturiser.  I only use lubricants during dilation.  

Hope this is helpful and not tmi?

xx

 

 

Feb 04:  (age 47y) Smear test normal

Stopped going for smears!

Summer 16: persistent yellow vaginal discharge

Dec 16: post menopausal vaginal bleed

Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 squamous cell cc diagnosed - confirmed by MRI/PET scans

Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A

Apr/May 17: 6x chemo, 25x external radio, 2x brachy

Jul 19:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

 

 

Ren

Thank you for your responses, I really appreciate it. My confidence is at an all time low these days. I hate feeling this way and want to be proactive in dealing with it, I’m just not exactly sure how. I will investigate the suggestions that I’ve not yet tried. I know I’m fortunate to still be here and I keep reminding myself of that. 

Lauren
dog_lover
dog_lover's picture

I, too, was diagnosed with lymphedema a month or two after my treatment was finished.  I wear support hose in the winter, and wrap my leg during the summer.  I measure my lymphedema leg to my normal leg about every month or so, to make sure the lymphedema is not getting out of control.  Lymphedema does make you tired.  But I really do believe exercise is necessary to keep you healthy--especially to keep the blood and lymph fluids moving.  Even if you just walk the dog everyday--it helps.  I will tell you that my tiredness has gotten better.  I'm now two years post treatment, and the lyphedema is just an afterthougt on most days.  Some days, I'm more tired than others, but it has been manageable, and really does get better as time goes by.

My respect is endless for those of you that have children.  Cancer is horrid and to add the worry of being a mom to the list is daunting.  I worry about being around for my animals--so I cannot even imagine the thought of leaving children behind.  So glad your outlook is so positive, and you realize how lucky you are to be alive for your son.  

  • Aug18, 2017- told I had cc
  • Oct 11, 2017-Radical Hysterectomy scheduled.
  • Oct 11, 2017- Radical Hysterectomy  not performed due to a cancerous lymph node.  Staged at 2B
  • Nov 6, 2017--Chemorads to start 
  • December 23, 2017--finished treatment

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Moving forward from a cancer diagnosis