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Help - can’t find anyone in a similar situation to me.

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Rachael R
Rachael R's picture
Help - can’t find anyone in a similar situation to me.

Hi, I'm new to the forum.

I am 39 years old and I was diagnosed with CC in July 2020 after 2 years of abnormal smears. 
I had a colposcopy in March 2020, which came back showing mild inflammation in my womb and some abnormalities.

From April onwards I had symptoms like smelly discharge and heavy bleeding after sex. I started getting pain in my side and back that I put down to sciatica. 
GP thought I had BV and confirmed no STI's. 
Attended GP again in June and she carried out an examination and she could see a growth. Referred back to hospital in July 2020 for another colposcopy which couldn't be completed due to the tumour. 

Went for CT scan and MRI scan in July and PET scan in August 2020. 
Around the same time, I became unwell and was rushed into hospital with kidney failure. Whilst under anaesthetic, the decision was made to put in bilateral nephrostomys due to the cancer having spread to my bladder.

I was transferred to Edinburgh to start treatment.

At this point, I was told that my cancer was stage 3b, having been initially diagnosed at stage 2b a month earlier.

They explained that I had an aggressive tumour that had spread into my paramatrium, and pelvic floor and bladder. 

Due to my kidneys failing, I was told chemo was not an option, I would have 25 sessions of radiotherapy and 3 sessions of brachytherapy. 

I am now home, the menopause symptoms seem to have started. 
I'm struggling to get any progress with the vagina dilators.

I've got MRI on 18th December 2020.

I've read loads of posts but no one seems to have had a similar experience to me. 

I am really worried that I am at a disadvantage having not had chemo.

Anyone offer any reassurance/advice? I'm feeling really low and worried. 

Rachael R

Memagh
  1. Rachel I'm sorry you're dealing with so much at the moment and you are right that your situation is not the most usual one. I don't have the same issues as you do so I can't be of too much help.  I do know there are many ladies who react badly to chemo so it has to be stopped. Some of these ladies have extra radiotherapy sessions added on at the end of treatment if their oncologists think it's necessary. I think with everything you have going on that you may benefit from posting in the advanced forum. The wonderful ladies on there have had to deal with many issues surrounding their cancer so may be of more help. You could also phone the Jo's helpline or ask the expert for their advice/information on your situation. Whichever route you choose, I hope you get the information you are searching for. We're here if/when you need support. 
    x Maria

Diagnosed CC 01st August 2019 Stage 1b2 with 1 local lymph node involved.

Something else showed up on pet scan. Treatment delayed for surgery, done on September 9th. Found to be a simple ovarian cyst, 1 ovary and tube removed.

Treatment plan 5 chemo, 25 extended field radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

February 2020 3 month scans NED

August 2020 9 Month scans NED

February 2021 15 Month scans NED

Extensive bladder damage seen on mri and damage to sigmoid colon.

 

 

Lydiasm

Hi Rachael,

I also can't offer any advice for you as I'm only stage 1, it seems like you've been going through hell and back so I just wanted to message you to send some positive thoughts. 

I have another health condition (which has maybe even potentially caused the CC) and although I've not met my oncologist yet, I do know there are complications with any of the treatments I can have. Why can't this horrible situation be more straightforward.

I hope you're doing okay xx

Abnormal smear 11/11/20 wirh high grade severe cells. Called into hospital same day for LLETZ

6/12/20 MDT meeting confirmed 1a1 cancer found in biopsy 

30/12/20 first oncology appointment.

21/1/21 Second LLETZ Under GA

2/2/21 Biopsy results show no more residual cancer and no more CIN3, all clear margins. Follow up in 6 months! And breathe...

AliAliOkay

Hi. I'm not in the same situation as you but I wanted to share what little I do know.... When I was having my chemorads, I reacted to the steroid medication they give you to stop you feeling sick after the chemo. My consultant lowered the dose of the steroids and said that, if I found the side effects of the chemo too hard to cope with, we could stop the chemo. He said that the radiotherapy was the real treatment.

It sounds like you've been through so much. Sending love. xx

17/4/20 GP referral following examination 

24/4/20 Colposcopy, biopsies

28/4/20 MRI

1/5/20 Told Grade 3 Squamous Cell tumour, stage 2b. Will have chemo and radiotherapy.

7/5/20 PET scan

14/5/20 Consultant appointment. PET scan showed lymph node involvement. Restaged 3c. Tumour is 5.2cm.

21/5/20 Radiotherapy planning appointment

8/6/20 25 sessions of radiotherapy, alongside 5 sessions of chemo, followed by 3 session brachytherapy.

Oct 2020: Told cancer free!

Dec 2020: MRI showed possible reccurrance. PET scan booked for 17/12/20.

 

Rachael R
Rachael R's picture

Thanks for replying. I'm just home from hospital. Hospitalised for sepsis, due to bilateral nephrostomies. Basically, the tubes in my back are poisoning me. 2 weeks of IV antibiotics and 1 nephrostomy removed.

MRI showed no measurable disease but the they the staged my cancer to Stage 4 because it spread to my bladder. 

I'm gutted, I feel like each time they tell me, I'm losing more of my life. 
Another MRI due in January 2021, fully anticipating cancer being back by then.

im so sad at the thought of not being around for my daughter. I came understand how I could have had stage 4 cancer when I was being monitored. Basically it's grown from nothing in March 2020 to Stage 4 in August 2020. 

Rachael R

Jazza
Jazza's picture

Hi Rachael

As you mention in your first post it sounds like your tumour is particularly aggressive; it must be so hard to have this much happen in such a short space of time.  I don't think I can say anything that might be helpful as my cervical cancer experience is different to yours; however just thought I'd mention that you might want to consider asking to join the 'living with advanced cervical cancer' section of this forum - wasn't sure if you are aware of it.

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
  • Apr 21:  NED.  Side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

More Information

Treatments for cervical cancer