Tumour reduced to 1cm with stranding around it after hysterectomy and 6 cycles of chemo What treatment was offered next?

[newlife]

Sorry a long question. I have had a hysterectomy and after the op there was a 3cm tumour left that they were unsure if it was left behind or grew during the period of the op and the start of the chemo. I have a particularly aggressive cancer cancinsarcoma of the ovary. Today went to see the consultant who said that it has reduced to 1cm with the stranding around it still there and they do not know if it is active or not.

The initial suggestion is to do nothing and to see how it goes

As it is aggressive I am not keen on this as it will grow.

We then had a lengthy discussion about what could be offered and she reluctantly suggested radiotherapy , but said this has lots of side effects and would effect my quality of life and is not proved to work. This wouldn't start for 4 weeks.

the next option was further surgery to remove what is left however she doesnt think this is a good idea as if it is 'live' then it will be six weeks after the op before they could treat it with Chemo.

Is it me or is it unreasonable to expect them to be a bit more proactive??

what have other people been offered?

Donna

[Hidden]

Hi Donna,

I am so sorry you have this problem, I am sorry that I haven't got answers to your questions but can understand your anxiety you could give the OvaCome helpline a ring and speak to Ruth Payne tel [phone] they are very good with advice love x G x

[RuthPOvacome]

Dear Donna

I can understand your concerns given that it is an aggressive tumour. Have you considered getting a second opinion? This might help you decide the way forward. If you would like to discuss this further please feel free to give us a ring at Ovacome 08453710554 Mon - Fri 10-5

Best Wishes

Ruth

[wendydee]

Dear Donna,

I would definitely ring Ruth. She has such a lot of experience and would be able to help you to decide by talking through procedures and options.

All the very best

Love Wendy xx

[LizK]

Hi Donna,

My Consultant says that, contrary to poular belief, it is not good to "nip tumours in the bud". He says that research has shown that more success is had if a tumour is allowed to grow and then is blasted with treatment. I know it is difficult to carry on knowing that the beast is alive and thriving inside - I am doing just that at the moment, waiting for a decision to be made when to start more chemo, but I trust my consultant so am trying to accept his advice to live each day to the full as much as possible.

Thinking of you,

Love Liz XXX

[newlife]

Thanks all have asked for a second opinion. I agree liz that at times it is better to wait but it wasn't explained as an approach, more as dont know what else to do!

[lisarm5]

Hi Donna, i hope you dont mind but could I ask you what stage your cancer was? I was diagnosed with an ovarian carcinsarcoma nine weeks ago and had not come across anyone else with this rare type until I saw your post.Im also a little confused...did you have chemo and then find out that the cancer had returned or was some of it left behind? Iam quite worried as although the surgeon said he had removed all of mine and that it hadnt spread could it be that it may have grown back whilst I have been waiting for chemo to start as like you say it is supposed to be an aggresive cancer (although my oncologist told me to disregard the word sarcoma and that it was a carcinoma???). I start chemo on monday and iam sooooo scared, im convinced im going to have every side effect going. Hope you dont mind me asking these questions.

Stay strong

Lisa x