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I really need advice surgery vs chemorads

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Rubyshoes
I really need advice surgery vs chemorads

So I have posted on here quite a few times and read what feels like every single post a million times.

today I had  telephone appt with a consultant (I say a consultant because I've been passed around a fair bit) and he wanted to discuss all my results - he was also the dr that gave me an internal exam last week.

basically he had some pretty amazing news and that it his belief that instead of being Stage 2b that he believes I am 1b1 and that brings surgery back as an option. He did however explain that it is really borderline and that They may discover something and may well need further treatment when he does the RH. 

he has given me a choice and I can't get my head around it to be honest

I would really like to know what people who have experienced both..  my gut instinct is to just go down the chemo/rads route because it just feels like I'm going to have to do that anyway so might as well just get on with it. But the nurse seemed really shocked that I would decide that? I'm 40 and I have my children and my husband has had a vasectomy so deffo no plans there!! I know that both have there pros and cons but I can't see the benefit of a RH. I cannot see how my MRI showed that it had spread past cervix and now the dr thinks no after an examination??

sorry if this is a bit all over the place I hope it makes sense 

sending hugs to everyone going through this horrible situation xxx

 

26/11/20 colposcopy + biopsy. Mass found but no further info given.

2/12/20 - diagnosed with squamous cell CC 

4/12/20 MRI scan 

10/12/20 appt with consultant - stage 2b - 3cm tumour with no apparent lymph node involvement 

19/12 - pet scan 

30/12 Pet Scan appears to be clear. internal examination doesn't show any different

 4/1 curve ball - doctor adv it's possible it's only 1b1 offered choice of RH or chemo/rads adv likely have to have chemo/rads after RH anyway so decided on chemo/rads

6/1 oncologist 1st appointment 

14/1 radiotherapy planning scan

 

Jazza
Jazza's picture

Hi Rubyshoes

if you haven't done so maybe you need to discuss with your doctor how the MRI shows your cancer has spread beyond the cervix and yet he/she is willing to trust that the examination indicates otherwise?

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
Jazza
Jazza's picture

Hi again

I was also in a grey area between surgery and chemo-radio; so lots of empathy - it's an agonising place to be.  My medical team advised me to have a RH on the basis that there was a 90% chance of success; I was informed on a Friday that my RH was planned for the following Monday - my appointment was with a registrar who I didn't really connect with and I signed the consent form with a sense of 'on a wing and a prayer'.  I was devastated to be told at my post op results appointment that I had a significant risk of recurrence and was being referred for chemo-radio, which I agreed to with great trepidation although I was slightly consoled to be told that the radiotherapy was targetted (causes minimal damage to areas surrounding the cancer)

I can't advise you what you should do because, as always, each case is different.  I can't even really say what I think I should have done with hindsight because I can never know what might have happened had I made other choices.  It seems I've been particulary unlucky with side effects from my RH (very unusual outcome of a semi-paralysed bladder for which I need to use catheters) - if that wasn't the case I would feel more confident to say having an RH first was the best thing I could have done.  Though if I'd gone for first line chemo-radio I might be regretting I'd lost an opportunity for a surgical cure - chemo-radio gives more side effects (often long term) than surgery.

I wish you well with your decision making - maybe write out a pros and cons list?

x

P.S: I had my lymph nodes surgically removed as a separate operation prior to decisions about RH or chemo-radio. My radiotherapy would have caused damage to my lymph vessels and any remaining lymph nodes.  I have ended up with fairly severe lymphoedema and I do wonder whether it might not have been so bad had I retained my lymph nodes and had chemo-radio as a first line treatment.  It seems I have been particularly unlucky with the severity of my lymphoedema.

       I believe I had a lower doses radiation than if I'd had chemo-radio as a first line treatment

 

  • 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
Rubyshoes

Hi Jazza

thanks so much for your replies and I'm sorry to hear about you rotten luck with regards to RH (like we aren't unlucky enough to be in this situation!!) 

it really is such a tough decision I almost wish I didn't have to make it, I should be so pleased that they think I'm in the surgical bracket now (and I am!!! albeit shocked as I had got my head around being 2b) but it's so borderline that I cannot see how I'm not going to have some chemorads in some capacity anyway and then have to deal with the effects of both. The dr was very matter of fact about an RH but the research I have done seems to lean towards chemorads being a slightly more effective treatment also for recurrence (I am also grade 3) 

I think I've kinda already decided to go down the chemorads route I guess I just wanted some reassurance that there isn't really a right or wrong decision

thanks so much for sharing your experience I often see your posts and hope that I can be that help for people in the future. 

all the best

 

 

26/11/20 colposcopy + biopsy. Mass found but no further info given.

2/12/20 - diagnosed with squamous cell CC 

4/12/20 MRI scan 

10/12/20 appt with consultant - stage 2b - 3cm tumour with no apparent lymph node involvement 

19/12 - pet scan 

30/12 Pet Scan appears to be clear. internal examination doesn't show any different

 4/1 curve ball - doctor adv it's possible it's only 1b1 offered choice of RH or chemo/rads adv likely have to have chemo/rads after RH anyway so decided on chemo/rads

6/1 oncologist 1st appointment 

14/1 radiotherapy planning scan

 

Harvitt

Hi, 

It's a big decision to make. I am a chemo rads girl. It's terrifying, daunting and no one knows exactly what is going on in your head or how it will effect you. I think if I wasn't a 3c and given the choice it would be to blast the bugger every time. I've had three c sections so I'm aware of the op and recovery but I think if it's zapped it's zapped. Done. It's not an easy decision to make and I'm glad I was told my outcome. I fought against it. Don't get me wrong. I was scared as f*** esp with the beachy therapy. But it wasn't as bad as I thought. It was a year ago I had my first and only symptom - a massive bleed. But at the end of the day it's your choice. Are you going to have a PET scan? 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
Rubyshoes

Thanks for replying Harvitt and for your complete honesty, I have read many of your posts as well and they really are so open and helpful! 

I have had a pet scan already so I still don't understand where the confusion lies!?? It's seems to me that 1b1 and 2b are quite different so after a biopsy, MRI, pet scan and internal exam how can they not be sure?? But I am also of the belief that I would rather be zapped even though it's going to be horrible from discussions it looks that I'll have to have that anyway so why put myself through surgery as well?? 

I guess ultimately without a crystal ball it's an impossible decision to ever know which way is best. So I'm going to trust my gut and go with chemo/rads and blast the horrible thing to smitherines hopefully never to return 🤞🏼

are you all finished with treatment now then? How have your check ups gone so far?? 

im most scared about the Brachy I am a bit of a baby with things hence why I was 10 years over due on my smear :( 

 

26/11/20 colposcopy + biopsy. Mass found but no further info given.

2/12/20 - diagnosed with squamous cell CC 

4/12/20 MRI scan 

10/12/20 appt with consultant - stage 2b - 3cm tumour with no apparent lymph node involvement 

19/12 - pet scan 

30/12 Pet Scan appears to be clear. internal examination doesn't show any different

 4/1 curve ball - doctor adv it's possible it's only 1b1 offered choice of RH or chemo/rads adv likely have to have chemo/rads after RH anyway so decided on chemo/rads

6/1 oncologist 1st appointment 

14/1 radiotherapy planning scan

 

Harvitt

Hi, yes, I've finished treatment and so far all the scans and check ups have been good. Scans are as clear as they can be. As for brachy, I was beyong scared. The ladies on here were amazing and supportive. I honestly didn't want it done.i refused it. I had a fight with the doctors. I was terrified. But, when the time came I decided that if I was going to have it done, I was going to have it done my way and my way only. I insisted I would only have one insertion and one removal and that I would have two zapps in one day (they can do this 6 hrs apart). Unfortunately, I wasn't allowed a morphine clicker due to covid and the ward didn't do it. But I had so much pain relief I was off my 'cervixs!' I would stress to ask for a sedative to help relax you throughout given little by little. They gave me this at night and it made a massive difference but during the 2nd day they didn't and in my eyes I needed it as a muscle relaxant. If you need me, in box me... Please. It's do-able and their is an end. 

06 Jan 20 massive bleed. 7 feb 20 smear came back highly differentiated severe dyskolious. 14 Feb biopsies taken. 21st Feb cc cells found. 22 Feb 20 told poorly differentiated squamous cell. 28 Feb staged at 2a. Tumour is 2.4mm/9mm 6 March restaged at 3c due to 3 lymph node involvement - x1 2cm. 12 Mar 20 met oncologist - told me coronavirus will probably kill me before cc does. 18 March 20 pre scan booked.
Teghog

Hi Rubyshoes

It does seem confusing that it's changed but obviously great news that it's better news and potentially dealing with a less cancerous area. I definitely understand your thoughts on the chemorads. When they suspected lymph node involvement (which was subsequently confirmed in my case), my consultant said the exact same thing. You could go through RH then have to have chemorads anyhow if it's borderline. 
I'm in week 2 of chemorads and none of it has been scary or painful, I feel a bit like I do with a hangover. I'm similar to you and a little bit apprehensive about the brachytherapy but I think cos it's right at the end of the treatment that I'll be raring to get it over and done with as feels like the final f you to the cancer xxx

Smear, no symptoms of anything wrong 08/10

Colposcopy and Lletz due to abnormal changes and HPV. Biopsy taken. 05/11

Confirmed CC with Adenocarcinoma 18/11

MRI, CT and PET scan 

10/12 Stage 3C1 due to lymph node involvement

28/12 Due to start treatment - chemorads and brachytherapy 

11/02

All done. MRI for brachytherapy shows no cancer visible in cervix and lymph nodes responding, yey! 

Rubyshoes

Aww teghog thanks for posting and hope you are keeping as well as possible. 

I cannot stress how grateful I am for your post. I am so greatful that my diagnosis has improved and even that I have been given a choice but it was really very difficult. I was lucky and got a cancellation to see my oncologist yesterday and she really gave me advice and reassurance about the choices and decisions. I'm having chemorads and they will probably start in the next 2-3 weeks she said I need some blood tests and a CT scan which will probably be in the next week. I'm just glad things are moving forward now because the waiting was torture!!! 

wishing you all the very best with your treatment. I am sure the brachy is worse in our heads and it's the cancer that needs to be scared 💥🥊 

take care

26/11/20 colposcopy + biopsy. Mass found but no further info given.

2/12/20 - diagnosed with squamous cell CC 

4/12/20 MRI scan 

10/12/20 appt with consultant - stage 2b - 3cm tumour with no apparent lymph node involvement 

19/12 - pet scan 

30/12 Pet Scan appears to be clear. internal examination doesn't show any different

 4/1 curve ball - doctor adv it's possible it's only 1b1 offered choice of RH or chemo/rads adv likely have to have chemo/rads after RH anyway so decided on chemo/rads

6/1 oncologist 1st appointment 

14/1 radiotherapy planning scan

 

noodlesdoodles

Hi lovely,

I was in this position and had to decide between surgery or chemorads. It’s a crazy place to be as you literally feel like you have to make an impossible choice.I rang MacMillan. I spoke to my nurse.

The lovely ladies on here all gave support, comfort and advice, which helped hugely.

In the end, I went with my gut and I also asked my consultant what they would do if it was them. They confirmed my gut feeling and I went for it.

You have gone with your gut, so know that you made the right choice for you at this time. It’s the only thing you can do.I really feel for you as making that choice was one of the hardest things to do through all of it.

However, you have got this. You can do it. You have already shown how strong and resilient you are. Breathe - then go kick cancer’s butt.

We are all with you all the way and I am here if you need anything. 

Hige 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

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Treatments for cervical cancer