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Struggling with 'new normal' after treatment

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blueskiesinside...
Struggling with 'new normal' after treatment

Hi everyone, I've never posted here before. But I'm really struggling at the moment. I had surgery about 6 weeks ago to have my pelvic lymph nodes removed, thankfully they were clear. I'll now be monitored regularly by my oncology team. The physical recovery is going ok but despite my good news I feel overwhelmed by this new normal of having been diagnosed with cancer and what this might mean for my future. I also have the BRCA1 mutation which means my likelihood of developing ovarian and breast cancers is greatly increased, so after experiencing cervical cancer I'm worried about quite a real and high risk of further cancers. I feel guilty because I know in lots of ways I'm one of the lucky ones not needing further treatment currently.

All these feelings have affected how I am socially; I now find being in groups of people quite difficult and tiring and struggle to know what to say in conversation which is completely different to how I was before. I'm also really worried about returning to work as I work in a busy and emotionally demanding setting. I have been trying to access psychological support but the wait seems to be several months everywhere I have enquired. I've found it hard to explain the combination of relief, worry, guilt and sadness to others. Have other people experienced these feelings after treatment?

Aug 2019 - referred for colposcopy following routine smear

Sept 2019 - LLETZ biopsy showed CGIN high grade abnormal cell changes

Oct 2019 - Diagnosed with cervical cancer (adenocarcinoma) aged 31 ?1a1 but unclear margins

Nov 19 - MRI and 2x further LLETZ biopsies to guide treatment, re-staged as 1b1

Dec 2019 - Pelvic lymphadenectomy

Dec 2019 - Lymph nodes clear - no further treatment required at present; ongoing 3 monthly monitoring. Strongly recommended to have hysterectomy in coming years due to CC and BRCA1 mutation 

Jan 2020 - diagnosed with lymphoedema to left groin

noodlesdoodles

Hi it is a strange time after any treatment as it’s only then I think you process the fact you have/ had cancer. Hearing that word is a huge shock none of us expect to hear and you rarely have time to process anything as you are straight into treatment and the crazy train that is. You have to process it sometime so it is well documented that it can be tough emotionally and physically.  Be kind to yourself and take time to look after yourself - you and your health are what matters now.

Try calling the helplines for some support - it’s scary, but I called Jo’s and it really helped. Talk to your CNS about your worries about BRCA 1, which are totally understandable by the way, and they may ease your worries. 

Know you are not alone lovely and it’s common to feel how you do. We are incredibly lucky to get the outcome we have and I remind myself of that daily, but you still have to go through the process of knowing you had cancer and how that changes you. Big hugs and know you will get through it xxx

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema
Jazza
Jazza's picture

Hi

It's very early days; only a few weeks since your lymphadenectomy.  As Noodlesdoodles has said, be kind to yourself - this thing takes time to work through. 

I can empathise with your worries about getting back to work: if you are in the UK, Macmillan provide very comprehensive support:

https://www.macmillan.org.uk/information-and-support/organising/work-and-cancer/information-for-employees/going-back-to-work.html

I'm sorry that you've got the additional concerns of increased risk for ovarian and breast cancer.  The Eve Appeal provide good support and information about the BRCA1 mutation:

https://eveappeal.org.uk/inherited-risks/risks-brca-gene-mutations/

Take care

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery 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
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
noodlesdoodles

Have a read of the paper ( google it) 

After The Treatment Finishes Then What? By Dr Peter Harvey 

I found it very helpful - you might too big hugs xxxx

 

May 19 smear June 19 CC diagnosed CT/ MRI July 19 EUA - into parametrium PET scan Results - 2B clinically/. 1b1 radiologically. Decide between chemorads or hysterectomy 30.07.19 Saw consultant- will do EUA / camera and node dissection first. If spread do chemorads 21.08.19 open Radical Hysterectomy and node dissection 2.9.19 NED Nov19 ISC bladder issues Diagnosed with Lymphoedema
Memagh

Thanks for the post noodlesdoodles. It's a well written paper, definitely worth a read x

 

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 radio and 4 brachy. Treatment start date 02nd October 2019. Treatment end date 8th November.

10th February 2020

MRI and Pet-CT clear. NED

3 monthly scans

 

blueskiesinside...

Hi noodlesdoodles and Jazza,

Thanks so much for taking the time to reply and post helpful links, I will take a look at them all. I think I need to take your advice of being kind to myself and giving myself time. I may chat to my nurses, I am also going back to my genetic counsellor about being BRCA1+ to chat through my options. Although I don't want other people to be in this situation it's so nice knowing I'm not alone and others on this forum understand and have been there. Hope things are going well for you both xx

Aug 2019 - referred for colposcopy following routine smear

Sept 2019 - LLETZ biopsy showed CGIN high grade abnormal cell changes

Oct 2019 - Diagnosed with cervical cancer (adenocarcinoma) aged 31 ?1a1 but unclear margins

Nov 19 - MRI and 2x further LLETZ biopsies to guide treatment, re-staged as 1b1

Dec 2019 - Pelvic lymphadenectomy

Dec 2019 - Lymph nodes clear - no further treatment required at present; ongoing 3 monthly monitoring. Strongly recommended to have hysterectomy in coming years due to CC and BRCA1 mutation 

Jan 2020 - diagnosed with lymphoedema to left groin

Mel.T

Abnormal smear results sept. Colposcopy revealed 1b1 cervical cancer. I'm 35 and 2 young children. Had radical hysterectomy in November. 6 weeks off work. Returned in jan. I work in a school. Once I started feeling better I was happy to be busy again. For me personally, I found myself feeling anxious and down. I was emotional, up and down but now on hrt which seems to help me (due to ovaries being taken). Don't get me wrong I'm still emotional at times but happier to be busy. I still can't believe it's happened to me and what I've been through but pleased to be all clear and on the other side. My first check up it's March so I may feel differently then. 
good luck and everything you're feeling is normal. It's a huge thing you've been through xx 

Mumof2
Klaw36

Hi Blueskies. No you are definitely not alone by any means. I was diagnosed stage as stage 1b1 and I was treated with loop excision and lymph node removal tool which thankfull came back clear and I am now NED. 

 

Your life will not bounce back to how it was before but you should not feel guilty or bad for that. You have just been through a massive physical and emotional trauma regardless of the fact you feel like you "got off lightly".  You are now subject to monitoring, more regular smears etc which then come with the worrying of waiting for results. I am in the same place myself and it's so overwhelming! 

Keep pushing for the mental support, my consultant was amazing and so supportive and he referred me for psychological support. Use Jo's helpline too, they are amazing. 

If you have BRCA I assume you have had genetic counselling and have been put forward for breast screening from the age of 30 onwards? If you haven't you should ask about that. I'm 2 years into mine. 

Some background from me, this isn't my first cancer diagnosis, I was 3 when I had kidney cancer so it's always been part of my life. Also my mum has had 14 diagnosis of cancers around the body. So when I was 25 I was sent for genetic testing and although I was negative for brca I was then advised that there was clearly some sort of link but they don't have a name for it yet. I was advised to have a hysterectomy and mastectomy once I have completed my family (I don't have any kids yet and I'm now 32!).

A very long reply from me there but hopefully it makes sense and makes you realise you aren't the odd one out. PM me if you ever want to chat more xxx

Wilms tumour, full left nephrectomy and chemo 1991. Full remission 1993

Abnormal smear, HPV detected 29.01.19

Colposcopy 18.02.19

Lletz procedure and biospy 11.03.19

CC diagnosis 21.03.19 Adenocarcinoma Stage 1 

25.04.19 Further Lletz and laprascopic lymphadenectomy

October 2019 - NED :) 

blueskiesinside...

Thanks so much for your replies Klaw36 and Mel.T as well, it's good to hear I'm not alone in how I feel! Yes I have annual breast screening due to the gene mutation but unfortunately there is no reliable screening for ovarian cancer currently. Wishing you all the best ladies and thanks again for the kind words and reassurance, it means a lot xxx

Aug 2019 - referred for colposcopy following routine smear

Sept 2019 - LLETZ biopsy showed CGIN high grade abnormal cell changes

Oct 2019 - Diagnosed with cervical cancer (adenocarcinoma) aged 31 ?1a1 but unclear margins

Nov 19 - MRI and 2x further LLETZ biopsies to guide treatment, re-staged as 1b1

Dec 2019 - Pelvic lymphadenectomy

Dec 2019 - Lymph nodes clear - no further treatment required at present; ongoing 3 monthly monitoring. Strongly recommended to have hysterectomy in coming years due to CC and BRCA1 mutation 

Jan 2020 - diagnosed with lymphoedema to left groin

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Moving forward from a cancer diagnosis