Staging upgraded, more stress - advice please.

Hello lovely ladies, having previously been advised that my cc was 1B1 from my MRI and biopsy results, yesterday I had my bowel and bladder checks under GA. The good news was that the bladder and bowel checks were all clear. The bad news was that they could see that the tumour was bigger than previously advised and about 5cm, and was also affecting tissue on the left hand side, and the top end of the vagina, which was not visible on the colposcopy checks. I was then advised that as the staging now looked to be probably 2B, surgery was no longer an option, and I would be treated with Chemo , Radio, and possibly Bracho Therapy. I was also advised that I would be booked in for a PET scan in a week to ten days. The consultant said that I would not be having a Radical Hysterectomy with 2B cc, as they now believe that due to marginal and Hysterectomy recovery issues, with 2B cc cases, the Chemo, Radio, and Bracko treatments have proved preferential ! I was then advised that I will be asked to attend a final results and MDT feed back meeting next Tuesday to confirm my staging and agreed treatment and timing plan. I  am still groggy from the GA, and very upset about it now being 2B, and if the treatment will be successful. It would be nice to hear from any of you in a similar situation, thank you so much in advance for your replies. xxx

Hi Diane,

Sorry to hear of your diagnosis. I am coming up for 2 years in July of being clear of stage 2B cancer. I like yourself was in the same situation they were convinced it was going to be a hysterectomy and then after my EUA they told me it was on the vaginal wall. 

The thought of chemo/radio is terrifying and yes it is difficult but it wasn't half as bad as I thought it would be. Any other questions Hun feel free to contact me on here. 

 

Laura x

Hi I was also told my cancer was in early stages till I had MRI and inturnal under ga i have been staged 2b as it has spread a little into the tissue I go and get my tattoos tomorrow and start 5 wks of rads and chemo once a wk for 5 wks and have some breachy treatment too good luck at your meeting Hun xxx

Hi Laura & Cvs, lovely to hear from you both, this website is helping me to keep my sanity and stay positive on this journey ! Fantastic to hear of your excellent results Laura, well done and good luck to you.

Hope it goes well for you tomorrow Cvs, I will be thinking of you, especially as we will be going through this together. keep us all posted with your progress.

 Thanks again, love and big hugs to you both, I will keep you all posted. xxx

 

Thanks Diane just wondering have thay asked you to do the interlace trail of chemo before you start your other treatment x

Hi Cvs, have not heard of Interlace trial, I will raise it when at the feed back meeting on Tuesday. xx

Hi again Laura, forgot to ask, how was the Brachy Therapy as it sounds very daunting ? Did you have any side effects and was it worse than the Chemo and Radio ? xxx

 

The brachytherapy was uncomfortable as I felt like I was going to wet myself even although I had a catheter in, they did release some pressure after I came round both times. Having the rods taken out was slightly uncomfortable but they did give me gas and air and the second time I had oramorph as well which was wonderful lol. I suffer with a range of side effects now from all of the treatment but nothing that I can't handle. I would recommend some good cream for your skin during radiotherapy as it can get very tender. 

Chemo was difficult as I felt nauseous for a few days after each session, I recommend listening to your body and not pushing yourself to hard. If you have any other questions I am more than happy to help in any way I can Xx

So sorry to hear about the upgrade Diane :-(

Just to say that I too was a 2b and am now 3½ years post treatment with no apparent side effects. You will probably find that chemo rads turn out not to be as scary in reality as they seem before you have tried them. I recommend drinking aloe vera juice to help with the radiotherapy.

Feel free to ask any questions you like.

Be lucky :-)

Tivoli

Hi I was originally diagnosed with stage 1b2 adenocarcinoma And found out later that it was early stage 2b. It was a shock and seems to make it a whole lot more scary. I didn't have chemo rads as I had chemotherapy and then a radical hysterectomy but I did have the brachytherapy and it wasn't as bad as you would think it was more uncomfortable the second time but just rubbish having to lie still for so long xx

  1. Hi Laura, thank you very much for your feedback. Information and advice from someone like yourself who has recently been through the same staging and treatment is so reassuring and priceless. Just one query, when your Chemo was stopped after the 4th session due to your allergic reaction, did they continue later, or increase the Radio Therapy ? Thanks again, Big Hugs xxx
  2. Hi Tivoli, Thank you so much for your support and advice. I have read a lot of your messages and your epic journey in Greece. You are a very strong and brave person, and very inspirational to all of us, so massive hugs and love to you from us all for all your help, support, and time dedicated to Jo's Forum, you are an angel - one in a million. xxxxxxxxxxxx
  3. Hi Charlene, thank you for your reply, lovely to hear from you. how are you now, and when did your treatment finish ? xxx

Thanks again to you all, I will keep you posted with the progress. xxxxxxxxxxxxxx ,

Hi Diane,

According to my consultant it's very rare to have a reaction to cisplatin, 4 is the magic number I'm told so they just stopped my chemo and didn't prescribe anymore radio etc as the chemo is only a booster and the radio/brachytherapy is what cures the cancer. The low dose chemo is only given as a booster in case any cells have strayed through your body. 

Laura xx

I had the brachytherapy in January and was told all looked good or no evidence of disease at my first follow up appointment although no scan was done, because my treatment was a bit different there was no need for a follow up scan. My treatment took 8 months so your chemo rads will fly past it almost becomes a way of life back and fourth to the hospital :). Chemo radiation is a very successful treatment for this stage it'll do the job I'm sure. 

 

Take care. 

 

Charlene xx

Thank you Laura & Charlene, I've been very low and emotional today and hearing from you has given me a big lift. Thanks again and I will let you all know how the feedback meeting goes on Tuesday. xxxxxxx

What a very kind thing to say Diane, thank you!

Charlene is so right about the routine of going back and forth to hospital. The slight risk of course is that you get so used to it you miss it when it's over but you can cross that bridge when you come to it.

Be lucky :-)

Tivoli

I miss my wee professor tivoli it's like going along with a wee life boat isn't it and then boom your on your own but it does get easier again like everything with a cc diagnosis it all levels itself out eventually xx

That's right Charlene, first it was every day for five weeks, now it's once every six months, and once the five years is up I'm told it'll be once every 24 months! Not sure how I'm going to make that jump either!

xxxxx

Tivoli

Hi Charlene and Tivoli, thank you for your encouraging support. I had a phone call on Friday to attend Hospital on Saturday for a PET scan. I am now anxiously waiting for my MDT results feedback meeting on Tuesday when I will be advised of my treatment plan and options. The waiting is definitely the hardest part. 

Thanks again, I'll keep you all posted. xxxxxxxx

Hello Lovely ladies,

I have had my results feedback meeting that confirmed there is no lymph node involvement, and the tumour is 4.5 cm with minimal contact with the left hand side pelvic tissue, and upper edge of the vagina. They confirmed the staging is 2B, and the cancer grade to be mid range 2 - 3. I was advised that I will be meeting with the Chemo & Radiotherapy Doctors next, to discuss my treatment plan and timing.

I feel so much better now knowing that the cc is contained, as I was totally petrified that the PET scan would show that it had spread. The Consultants are lovely, and reassured me that my condition is very treatable and the results will be positive.

Big Hugs to you all, I'll keep you posted. xxxxxxxxx 

BRILLIANT NEWS DIANE!

(((((HUG)))))

Congratulations!

Be lucky

Tivoli

xxxxx

Thank you Tivoli, and massive hugs and love from all of us for being our Guardian Angel xxxxxxxxxxx

I'll keep you all posted with the treatment progress. xxx