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Bad news

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hall284002
Bad news

So after the doctor examined my mum at 6 weeks and said he couldn’t see any tumour, it  turns out the blighter is still there and she is not eligible for a radical hysterectomy or pelvic exoneration because it’s in some of the pelvic tissue. We are officially out of curative options. 

Mum is opting for palliative chemo to extend life but we’re not sure how successful it will be. It just seems so mad that there’s nothing that can be done to cure when it’s still confined to the pelvic area. 

Onviously it’s something we’re all now trying to come to terms with. 

Mum is adamant she doesn’t want to join any forums (‘I’ve got this far without them’) and I’m unable to join the advanced forum as it isn’t me that’s received the diagnosis. 

With that in mind, is there someone from advanced reading this who can offer any info about the chemo she’s about to go through? Life expectancy etc. And if there are any ‘advanced’ support groups that family members are able to join?

any help would be really appreciated xx 

Weepingwillow
Weepingwillow's picture

Hi Hall

I am so sorry to hear this and whilst I don’t have any experience I didn’t want to read and not reply.

I hope someone from the advanced section will reply to you soon and that you will be able to find some support for both you and your mum.

I wonder if your mum has considered a second opinion on surgical options or thought about looking into clinical trials?

I send lots of love to you both at such a difficult time and do hope someone soon will come along with more knowledge as many ladies are on long term chemo maintenance and Will be able to offer the correct advice to you

 

Wendy x

noodlesdoodles

That really is rubbish news and I feel for your mum, you and your family. 

Hopefully,you can get some feedback and support from some of the ladies here. 

Would joining the family and partners section help - maybe others there could could offer advice/support. Maybe it is worth trying a second opinion? 

I am sorry I can’t offer any more than this but I send love and hugs xx

noodlesdoodles

Also what about calling the support lines? They should be able to help. Maybe ask the expert on Jo’s May offer some advice? 

noodlesdoodles

That really is rubbish news and I feel for your mum, you and your family. 

Hopefully,you can get some feedback and support from some of the ladies here. 

Would joining the family and partners section help - maybe others there could could offer advice/support. Maybe it is worth trying a second opinion? 

I am sorry I can’t offer any more than this but I send love and hugs xx

Petesdragon
Petesdragon's picture

This all sounds a little strange because if it's confined to the pelvis she ought to be eligible for an exenteration. I am wondering if the cancer is in the pelvic sidewalls? If so she may be eligible for something called a LEER which is available at The Royal Marsden and Gateshead. Could she be considered for a second opinion at one of those if sidewall involvement is the issue?

Karen x 

 

    • 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. 

hall284002

Thanks so much for all your replies. I will speak to my mum about the LEER procedure. It is in the pelvic walls which is why the wasn’t suitable for the exenteration. Gateshead is very close to her. 

lawPH

Hello. I sent you a private message. Hope you dont mind. Thank you.

Mom’s CA:

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

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

Petesdragon
Petesdragon's picture

That's really good news that she is near Gateshead. One of the members here  had LEER procedure there. Sadly she is no longer with us but it wasn't because of the sidewall issue. If you private message me I can give you the name of her surgeon. 

Karen x 

    • 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. 

nm_353
nm_353's picture

Sorry to hear! And second opinion second opinion! I know it’s tough but don’t give in! You could very well find someone else that might can do a procedure such as the LEER or otherwise. Goodluck keep up updates.

June 2016- pap, not up to date, results abnormal

Julyy 5th-  After followups diagnosed with Adenocarcinoma

July 12th 2016- Met with oncologist, clinically staged at 1b2, staging confirmed with MRI and PET. Tumor is endocervical and approx 7 cm.

August 2016- Started chemorads. Post followup after treatment, NED

Sept 2018- Still NED

Claire2111

I had a recurrence into the side wall.  As long as its not spread anywhere else the LEER surgery is def an option.  I had my operation in Gatehead two years ago.  Its very extensive but does have a 50% success rate for curative.  

See me a message if you want to chat through 07834450991.

Jo

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