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3 years post treatment - advice needed/ what’s your experience?

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Bumblebee25
3 years post treatment - advice needed/ what’s your experience?

Hi everyone, 

I've just had my review appointment (which can I say I'm proud as hell about, 6 months!!! So chuffed!! Considering I used to have a panic attack at the thought of going from 3 monthly to 4, I've now done 6!! And just like the rest it's totally doable...a little positivity and reminder for anyone going through this or just finished treatment that we can totally kick ass) 

but I just wondered what your experiences of follow up appointments are like now, for anyone else that's around a similiar stage? 

 

I'm 32 and I'm looking for some advice on where to go for information on hormone replacements or supplements that can help? I'm really worried about HRT as I felt like my tumour was hormone fed but I'm really worried that not having anything could do more damage as I'm pretty young and should've had a fair way to go before reaching this wonderfully unstable place they call the medically induced menopause ;)

I've been having a few niggles and my GP pretty much doesn't want to know, in fact she told me that because of what happened (the c word) that I'm looking for holes in things constantly, which has really upset me because I barely go unless I have a major niggle and has made me worry about raising stuff now. I'm quite cross about it tbf and don't think I should feel like this at all but it's like they aren't bothered. 

I've asked for advice at my gynae review today and the registrar I spoke to pretty much said it's all side effects and there's not a lot they can do. I just wondered if anyone has had any luck will follow up treatment or advice? I totally get this is standard procedure for them and they see it so much, but it's so hard knowing what is normal, what's side effects from treatment and what isn't!! Does anyone else feel like you're playing a game of Russian roulette sometimes? I do wonder if it's PRD but they won't even acknowledge it's a possibility at the moment and I just feel like I'm at a loss of what to try next as I'm running out of excercises/activities and natural remedies to try. 

not sure if anyone has had similar but some of the symptoms I'm really struggling with at the moment alongside the standard bladder and bowely issues, (I won't go into them all hahaha we'll be here all blooming day (hiding monkey emoji):

- hip pain (I've had a DEXA scan which is saying I need additional vitamins) i struggle with it so badly after doing excercise, walking and sometimes just laying flat sets it off. 

- swelling of left leg, ankle mainly, actually just my left side of my body (massaging helps but it's very strange, not to the point where you can leave an indent by pushing but just fatter than normal and really uncomfortable).

- I also struggle with my groin, left side, like constantly feeling my underwear is too tight (I'm continuously buying bigger knickers (if that makes any sense whatsoever) 

ahhh so sorry for the long ramble, any advice greatfully received. 

sending love <3

B x

2 May 2017 Smear 4/5 May 2017 Haemorrhage. 8 May 2017 Colposcopy, LLETZ, punch biopsy.10 May 2017 MRI 11 May 2017 CT 1 May 2017 suggested diagnosis of CC 23 May 2017 diagnosed CC 2b19 June 2017 Start Chemo/Rad Finished 27 July.5 August 2017 Brachytherapy18 October 2017 MRI 7 November 2017 12 week appt & MRI results - lymph nodes no longer showing, inconclusive about remaining tumour. Scan again in 3 months.   February 2018 - All looks good, NED.

June 2018 - NED

October 2018 - 1 year post treatment - NED  

October 2019 - 2 years post treatment still NED

 

September 2020 - we think still NED!? Fingers crossed! 

Jazza
Jazza's picture

Hi B

I'm 3+ years post treatment and  I've got mega bladder issues and lymphoedema in right leg/foot.  I'm particularly picking up on what you say about swelling in your left leg/ankle and discomfort  in your left groin - that sounds like it could be lymphoedema.  Lymphoedema is often progressive and needs to be managed to hopefully stop it getting worse.  I was referred for treatment at a local lymphoedema clinic by my GP.  Be aware that not all GPs are well informed about lymphoedema so you might have to try more than one.  My GP measured the circumference of both my legs at various points and noted that my right leg was bigger than my left and referred me on that basis. If you struggle to get support from your GP and are in the UK I would suggest contacting the Lymphoedema Support Network for advice at: https://www.lymphoedema.org/

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: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Bumblebee25

Thanks for your reply Jazza! 

I'll def have a look further! I had been doing a bit of reading about lymphodema, but i didn't really persue it as i keep getting told because it's still going up and down, and not at a point of where it's stuck with fluid that it's not it... it's really getting me down though. I've even had to cut the legs of some of my underwear because it hurts so much at times if i've been out and about and unable to get changed. 

really appreciate you taking the time to message :) thank you xxx

2 May 2017 Smear 4/5 May 2017 Haemorrhage. 8 May 2017 Colposcopy, LLETZ, punch biopsy.10 May 2017 MRI 11 May 2017 CT 1 May 2017 suggested diagnosis of CC 23 May 2017 diagnosed CC 2b19 June 2017 Start Chemo/Rad Finished 27 July.5 August 2017 Brachytherapy18 October 2017 MRI 7 November 2017 12 week appt & MRI results - lymph nodes no longer showing, inconclusive about remaining tumour. Scan again in 3 months.   February 2018 - All looks good, NED.

June 2018 - NED

October 2018 - 1 year post treatment - NED  

October 2019 - 2 years post treatment still NED

 

September 2020 - we think still NED!? Fingers crossed! 

Jazza
Jazza's picture

Hi B

I had to buy new underwear because of discomfort in my right groin - I find the no VPL ones are kind to my groin area.  You don't want anything to constrict where there is lymphoedema because that will prevent the lymph fluid from draining properly.  Something I wish I'd known about earlier than I did is  ICG lymphography scanning which will give more insight as to the extent your lymph system is malfunctioning.  I don't think the scans are available on the NHS and they cost in the region of £800.  I got a scan done with a view to LVA surgery, but unfortunately I'm not suitable.  If you are interested you can find out more on the following link: https://olp.surgery/

it's very important to look after your skin in the areas where you have swelling because if it is lymphoedema you will be at more risk of cellulitis. Try not to get cuts, bites, scratches etc in the lymphoedema area and if you do theN clean, apply antiseptic and cover if there is an open wound.  It's also important to moisturise the skin regularly to stop it getting dry; dry skin is more likely to have small breaks  which will allow bacteria in to potentially cause cellulitis.

Wearing a compression stocking is the best way of slowing down the progression of lymphoedema in the leg.  It's important that you are measured and prescribed an appropriate garment by a lymphoedema specialist.  I hope that's not too awful a thought - i loathed the idea of a compression stocking to begin with but now I wouldn't be without mine even though it's a bit Nora Batty - actually there is a range of colours to choose from so not so bad.

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: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
Bumblebee25

Hi Jazza, 

all good info to know, thanks so much :)

oh gosh, i pretty much lived in surgical compression stockings for nearly a year when i was first diagnosed, through treatment and after, aslong as they're not the fetching bogey green ones i think i can manage the rest haha

xxx 

2 May 2017 Smear 4/5 May 2017 Haemorrhage. 8 May 2017 Colposcopy, LLETZ, punch biopsy.10 May 2017 MRI 11 May 2017 CT 1 May 2017 suggested diagnosis of CC 23 May 2017 diagnosed CC 2b19 June 2017 Start Chemo/Rad Finished 27 July.5 August 2017 Brachytherapy18 October 2017 MRI 7 November 2017 12 week appt & MRI results - lymph nodes no longer showing, inconclusive about remaining tumour. Scan again in 3 months.   February 2018 - All looks good, NED.

June 2018 - NED

October 2018 - 1 year post treatment - NED  

October 2019 - 2 years post treatment still NED

 

September 2020 - we think still NED!? Fingers crossed! 

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