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Newly Diagnosed - Lymphedema worry

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Moomin82
Newly Diagnosed - Lymphedema worry

Evening everyone

I've been recently diagnosed with adenocarcinoma Stage 1b1 Cervical Cancer and currently booked in for a Radical Hysterectomy (incl Ovaries) and Pelvic Lymph Node Dissection. I appreciate this is really not going to be a pleasant operation, especially being plummeted into Surgical Menopause at 38, but the thing that worries me is also the potential risk of Lymphedema, as a bit of playing around with HRT will hopefully solve my hormones over time, but Lymphedema could effect what I enjoy doing in life, for life!

I'm very active and hike every weekend, holidays are alway active and either hiking/skiing and I also do weights and HiiT classes regularly. I've even got a hiking holiday booked for end of May which I'm guessing might be a bit presumptuous now. So, even though they said there is no preventative measure for Lymphedema and you either get it or don't, I'm trying to focus on something and give myself a plan until my operation (which seems an ageeeee away) which is currently re improving my Lymphatic System/Lymph Node Drainage with any idea I can get my hands on - currently consists of Yoga, Body Brushing, Rebounder, Herbal Teas (Red Clover/Echinacea seem to come up at the minute) and deep breathing exercises. Just thinking that surely giving anything a go is worth it - it can't do any harm so why not!

I'm just wondering if anyone has any idea they can add of things they did or just general advice??? It would be really appreciated and nice to hear from people in the same position or with some experience.

I do feel they're being very agressive and did ask if the Ovaries/all my Pelvic Lymph Nodes were necessary but they seemed to think it was the way forward. I suppose I just felt that way as originally I was told I'd be having a Cone Biopsy as treatment and then found out something very different!

 

Thanks, Moomin :0)

September 2020: Smear

October 2020: Lletz procedure

December 2020: Dignosed adenocarcinoma Stage 1b1?

December 2020: MRI booked 30th - results show no sign of spread

February 2021: Radical Hysterectomy (incl Ovaries) and Pelvic Lymph Node Dissection

Jazza
Jazza's picture

Hi

Lymphoedema was probably my worst fear, especially when I was advised that I should have chemo-radio treatment following my surgery.  Unfortunately I have ended up with it in my right leg/foot so I can totally empathise with your fears and worries about it. 

I agree with your medical team that you either get it or you don't; my team seemed a bit laid back about my risk and even told me that I wouldn't get it because I am slim and then suggested that I could manage it by wearing cycle shorts - pretty poor advice.

The lymphatic system will work optimally in the context of a healthy body. So I would suggest it's a case of following the basic health advice of having a healthy diet, regular exercise, not smoking and keeping well hydrated (not too much caffeine or alcohol); being overweight or having a poor vascular system will make it harder it harder to manage lymphoedema if it occurs. Lymphoedema increases the risk for cellulitis so it is important to pay particular attention to skin care in the at risk area; always clean and cover bites, stings, scratches etc and keep the skin well moisturised with a non-perfumed moisturiser like Aveeno; I've heard of cases where an infected bite etc has triggered lymphoedema

One of the problems with lymphoedema is that there can be considerable damage to the lymphatic system before one gets symptoms. I developed minor symptoms shortly after my treatment finished in May 2017 and even a year later although it had progressed somewhat it still seemed fairly mild. Then, to my horror, about 6 months after that (November 2018) it suddenly appeared in my foot and toes and it is the latter that has been particularly debilitating for me. This happened despite me receiving treatment from an NHS lymphoedema clinic since September 2017.

The best way I could have had a better idea regarding the extent to which my lymphatic system was malfunctioning, would have been by means of specialist scans such as ICG lymphography and maybe lymphscintigraphy. I've had both these scans (privately) and only wish I'd known about and had them earlier as I would have been able to optimise my treatment earlier than I did possibly through better garment choice (custom made flat knit stocking + toe caps in my case) or even 'curative' surgery.

I would recommend the following links (UK based) for further information and support:

http://www.lymphvision.com/

https://olp.surgery/

http://www.mlduk.org.uk/

https://www.lymphoedema.org/

 

According to my medical team, I have been particularly unlucky in that my lymphoedema progressed fairly rapidly and that it developed in my foot.  My affected leg doesn't look very different to my normal leg but it takes a lot effort to keep it that way; I can't wear most of my old shoes anymore and had to stock up on some lace-up flatties one size up (length and width wise) - I wear a thicker sock on my normal foot to help the larger shoe fit better.

Hope all goes well for you.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: PMB
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1 (1B2 on new FIGO) 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 2A1 (2A1 on new FIGO)
  • Apr/May 17: 6 chemo, 25 external radio, 2 brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Moomin82

Thanks Jazza, those websites and your advise have been really helpful and most of which I hadn't come across in my research, so big thank you!

Sorry to hear about your experience, I'm happy to hear you're managing to keep the Lymphedema in check, despite the effort you must have to make to keep it that way x

September 2020: Smear

October 2020: Lletz procedure

December 2020: Dignosed adenocarcinoma Stage 1b1?

December 2020: MRI booked 30th - results show no sign of spread

February 2021: Radical Hysterectomy (incl Ovaries) and Pelvic Lymph Node Dissection

More Information

Cervical cancer