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I have never felt so alone r

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Krussxo
I have never felt so alone r

I'm really struggling with how I feel about it all. I've just turned 26 and have been trying for babies for two years, I'm so gutted and angry and sad that I've got this and I dont know how to vent. I found out last week.

I just feel numb 

 

Cathryn russell

Lotty9000

I’m so sorry that you have a reason to be on this forum! 

I can only imagine your frustration and upset. 

Do you know what your stage is? Are fertility sparing options suitable for you? 

This forum is full of great,supportive people xxx

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

lawPH

Hi there! My mom was also diagnosed with villoglandular adenocarcinoma stage 2a. May i ask what your doctor told you about it, if any? I am trying to research on it, but very limited info is available. Thank u

Mom’s CA:

- Dec 4, 2018: diagnosed with stage 2a adenocarcinoma

- Dec 17 - start of treatments (25 radiotherapies, 6 chemos, 4 brachy)

Lotty9000

Hi 

Villoglandular adenocarcinoma is apparently a rarer form of adenocarcinoma so there isn’t a great deal out there. Following MDT they told me that it tends to “behave better” than other adenocarcinoma and that it doesn’t tend to spread to lymph nodes. Obviously because it’s glandular it does have potential to have skip lesions and be present in other areas of the cervix which is why I’ve been recommended to have a hysterectomy. I’m going to have a repeat LLETZ to decide what sort.

Do you know anything else? 

Hope your mum is doing ok?

 

C x

11th March 2019- 1st ever abnormal smear. (Never missed a smear)

1st May 2019 - Colposcopy with LLETZ

9th May 2019 - diagnosis ?1B Villoglandular adenocarcinoma 

22nd and 23rd May 2019 - MRI/CT

29th May - MDT meeting. MRI/CT clear. Amount of tumour 1A stage.

13th June 2nd LLETZ with top hat procedure 

3rd July Confirmed staging 1A1, clear margins on 2nd LLETZ. Scheduled for laparoscopic hysterectomy, keeping ovaries.

29/8/19 Total Laproscopic hysterectomy with ovarian conservation.

26/9/19 pathology confirms NED:-)

lulululu

 I was wondering the same, which stage are you?

Hugs.

Krussxo

I'm stage 3. Had my ct scan so will find out if it has spread anywhere else.

If it hasn't got to my ovaries then I'll have my eggs froze and I want a full hysterectomy but I know they will want me to try chemo so we will see.

I'm just so angry by everything 

 

Cathryn russell

Petesdragon
Petesdragon's picture

Did they offer you a hysterectomy or is this something you asked for ? That isn't standard treatment for stage 3. Hysterectomy is generally for stage 1 or less. Stage 3 would be chemoradiation usually. I don't know about fertility sparing options in such a case. I am sorry. 

 

 

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Krussxo

I didn't want to go through chemo so my only other option is hysterectomy 

I dont want to keep my ovaries if I cant use them I'd rather go through menopause 

 

Cathryn russell

Petesdragon
Petesdragon's picture

If you don't want chemo then I would have thought radiation would be the logical choice. A hysterectomy would be highly unlikely to be curative alone for a stage 3. That's why they don't do it. Is there a particular reason why you don't want chemo? Perhaps we could reassure you.

    • Stage 3 Glassy cell adenocarcinoma  1997 (negative smear tests).

Treated with Wertheim's hysterectomy, chemorads.

October 2017- new squamous cell vaginal tumour diagnosed,  probably radiation-induced. 

Total pelvic exenteration on 19th December 2017. 

March 18 Post-op CT scan shows healthy kidneys and successful urostomy and colostomy. No evidence of recurrence. Discharged by urology and colorectal surgeons. 2 down and 2 to go!

June 2018. CT scan shows 2 new pulmonary nodules.  

CT Scan Jan 2019. Nodules gone. No evidence of disease. 

Krussxo

Honestly it scares the hell out of me

I dont want to be feeling like I'm ill all the time ( sorry if it offends anyone) I'm just waiting on my results now and feel like it is taking forever I had my cone biopsy and thought that would be it, I'm just such a mess. It's been 4 weeks and 3 days since I had that and my sex life feels no existent. I really want to do it but I'm scared incase anything happens. My partner is super supportive and so caring he isn't bothered about the sex just want to feel like the old me before I go forward with whatever treatment they recommend. 

 

Cathryn russell

Locket

Hi 

I’m also stage 3, and they have advised chemorads is only option that will give me fighting chance of beating this. I too am scared of chemorads and the effect it has on my body. But if that what it’s going to take I will do it. Have a think about the short term changes in your life that will have the best outcome overall. From what I can see your sex life will return to normal. 

I find it hard to accept in actually ill and just want everything to stay the way it’s always been. But unfortunately that can’t happen. 

 

Xx

Mousehouse
Mousehouse's picture

chemo rads are totally doable

please look at my past posts and those of phileepa too as they will give you a good insight into what its like.

I was pretty good on it all-worked all the way through , went to the gym for the fiirst 2 weeks and then just did pilates and walkiing for the last 3 weeks

it really is no where near a scary as you tthink and you have a much better chance of survival on later stages

SC84

Hi ladies,

I am a month post treatment and just want to give you some reassurance! Please don’t let the fear of the unknown prevent you! The treatments are crap and no one in their right minds wants to go through with them but they are doable!! 

The radiotherapy doesn’t hurt and you’re in and out so quick! It takes longer to get you in position than to actually have the treatment! Chemo again doesn’t hurt, I felt cold to the core but only whilst the bag was running! I’ve not lost my hair and any thinning has been barely noticeable! Other side effects are individual to you, you won’t know if any until you start treatment! Drink 2-3litres minimum of fluid! Invest in a good moisturiser too! Take the medication provided but beware the steroids! They will keep you awake! Lol! Brachytherapy I was asleep for so can’t offer much other than once all was done I walked out the same day albeit wobbly on my feet from the anaesthetic but no pain or discomfort! 

Listen to your body throughout, it’s ok to say not today! You will good days and some not so good days but nothing you can’t handle!! I hope this goes some way to alleviate your anxiety! 

Xx 

 

  • Nov 17 to August 18 - Abnormal bleeding throughout pregnancy. Deemed to be pregnancy related.
  • October 18 - post c section infection - examined by GP
  • November 18 - developed discharge and heavier periods which gp said was normal and give myself time to heal
  • Jan 19 - abnormal pelvic exam
  • Feb 19 - Following MRI & PET/CT diagnosed stage 2b adenosquamous with lymph node involvement
  • march 19 - ovarian transposition (ovaries still within radiation field :-( so will lose all function!)
  • April/May 19 - 5wks chemoradiation and 3x brachytherapy August 19 - NED

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Cervical cancer