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The cancers gone but I feel so confused about lack of answers.

7 replies

LadyPenny · 17/05/2015 19:33

I was diagnosed with cervical cancer in July 2013. It was stage 2 and I had months of chemo, radiotherpy and brachytherapy. Treatment was hell but I was lucky and in January 2014 I got the all clear.

In August 2014 I had a routine scan. I didn't for one second think there would be a problem so I was devastated to be told that the cancer had returned. Things were a lot more serious this time around. I was referred to the a London hospital for treatment. I have young dc and telling them and my elderly mum that the cancer was back was the worst thing I've ever had to had to do.

The treatment was to be an operation to remove all of my reproductive organs, bladder, bowel, colon, and vagina. Before going to London I had an op at my local hospital to take biopsies. On my next visit my consultant told me that the biopsies had come back inconclusive. However, he told me not to get excited because I did still have the disease. He said how sorry he was and I cried buckets with my dh and specialist nurse.

I was told I had a 35% of survival. I began to make memory boxes for my children. I was so scared, not only of dying but of life after such a major operation if I did survive.

The hospital is 80 miles from my home and I had to go weekly for 4 weeks while they carried out tests. In late October I went in for a small operation to take biopsies and which would help my surgeon plan the big op which I was told would happen in November.

That night after my op my surgeon came round to see me. He told me that a scan taken a few days previously had shown that the nodules had shrunk. He also said that he could find no physical sign of cancer. He decided not to go ahead with the op but to do a further scan a month later.

The next scan was completely clear.
So I should have been ecstatic and I was. But six months later I find I'm obsessing with knowing what happened. Nobody has told me what happened, did they make a mistake or did my body somehow miraculously cure itself?.

I see my consultant every 3 months and all he has said is he is baffled and I am very lucky. My specialist nurse was amazed, she said she has never known this happen in her 20 years nursing.

I don't care if they made a mistake. I'm not going to sue or anything. I'm so grateful to be alive and would rather they made a mistake in my favour than the alternative. I would just like some answers. Dh says I need to try and move on. He doesn't think they will admit they might have made a mistake but I'm really struggling.

I just wonder if anyone has any advice or has been through anything similar.

OP posts:
sakura · 17/05/2015 19:43

sounds fucking horrendous. Cervical smears are known for being dodgy. Stats show that since routine screening began women haven't stopped dying of cancer. At the same time, women are sometimes treated for cancers they don't have due to mix ups. It's awful. I hate hospitals and do anything to avoid them. I'd honestly rather die young, but that's just me and perhaps I sound flippant, but it's hospitals that scare me, not death.
I'm so glad you're fine, but I'm not surprised you're obsessing. You probably have PTSD. Treat yourself kindly and treat yourself as often as possible.

LadyPenny · 17/05/2015 19:54

Thanks sakura.

It was a smear that picked the original cancer up. Although CC is very slow growing and I went from a normal clear smear in 2011 to full blown stage 2 cancer in 2013. I have requested a copy of my smear audit three times now but still haven't seen it.

The second "cancer" was in my vagina and was picked up when I had an MRI scan.

I hadn't thought of PTSD, maybe I should visit my GP for a chat.

OP posts:
Marzipanface · 17/05/2015 20:07

How horribly frightening and traumatic for you. I'm sorry. I would want answers. You have every right to know. I would make a complaint through the PALS service at the hospital who treated you then demand they fund free counselling to help through your post traumatic stress. You can get free counselling on the NHS to be honest if you go to your GP. You definitely need to talk about this with someone so you can move on. Good luck.

CocktailQueen · 17/05/2015 20:11

Agree with Marzipan - contact PALS and ask to see all your patient records and speak to someone about your experience. This will help you get things straight in your mind and move on. Ask how the hell this sort if misdiagnosis happened in the first place. Sounds horrific.

Also, kick up a fuss that you haven't received the paperwork and make a complaint about that too - if you request it, they have to provide it!

Big hugs to you, op.

Coldcabbagestew · 17/05/2015 21:06

I'm not sure you necessarily need to go down the complaints route to get the answers you need and deserve. I would suggest making an appointment to see your consultant to go through everything that has happened in detail.

Whilst it is obviously far from ideal that you were told that your cancer had recurred when now looks like it now hasn't, MRI scans post radiotherapy treatment can be very difficult to interpret (you can see lots of inflammation and scarring) and sometimes situations like this do occur.

If it would help you to regain confidence in your team you could ask for a second opinion and external review of all your scans.

I do agree with previous posters who have suggested seeking counselling as you must have gone through such a range of emotions over the past few months.

LadyPenny · 17/05/2015 21:27

Thank you everyone.

I don't want to complain. I'm so grateful for the treatment I've received. Without I wouldn't be here, Mistakes happen, I accept that but I just get the impression everyone is trying not to say too much in case I sue them or something. It's not that. I never would, I just need to know what was going on in my body.

I have another appointment soon, I think I will pop into the McMillan centre and see if there is anyone I can talk to. Will also see my GP about having some counselling.

OP posts:
Coldcabbagestew · 17/05/2015 21:47

You will be able to access counselling through MacMillan too - probably with a shorter waiting list and more cancer expertise.

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