Good news after recurrence

Hi there

Usually I am an active reader in the forums and I never comment but this time I have to do an exception and share my story hoping that at least one of us suffering with cancer can benefit from it.

 

Last year in spring I was diagnosed with recurrent cervical cancer. After initial diagnosis and hysterectomy fallowed by radiotherapy in 2010 for stage 1B cervical carcinoma I received the news that the cancer came back to my pelvic wall. The tumour was unrespectable due to its size and it also invaded iliac bone and I was offered only palliative chemotherapy with hope to slow it down and control for longer. Together with chemo (Taxol/Carbo) my doctor added Avastin. They couldn't do more radiotherapy because the tumour was in the same area where it was given the first time. Oviously hearing that the chemo is only for palliative purposes I started to search for hope that I still can be cured. Unfortunately I found so little encouraging stories about cervical cancer recurrence. But then one day I found a website about Carbon Ion therapy. It is kind of radiotherapy but with carbon ions. Because it’s 2-3 times stronger than conventional radiotherapy it can be given only directly to the tumour. It can be shaped according to the size and shape of it and can be applied to the previously radiated areas. It is fairly new treatment and not very popular because of the cost involved. Only 5 centres in the world have the machines with many more planed to be open in the near future. I contacted them and within few weeks I was told that I can come. After being used to the time scales here in UK I was amazed by their speed. Anyway in October I went to Japan for a month and received the radiotherapy. Just a week ago I had first scan to see how it worked, and the results exceeded everyone’s expectations. The tumour I had now appears to be inactive! I can not describe how that feels to hear. Next scan will be in 3 months and I really hope that it will be the same good news. So all I wanted to tell other ladies who are going through similar hard and sometimes desperate times that always have faith, no matter how dark and hopeless things might seem. While we are alive and breathing we always have a chance.

Hello Orchid, this is fantastic news and just shows you that they're really making advances  in the fight against cancer ,   the benefits of which are being enjoyed by people like you!!   

Thank you for sharing this, as many of us may think that when all conventional treatments for cancer have been exhausted, that that's it,  this will give hope again to many of us who may think we can do no more, however - I'm guessing that this treatment is not 'free' as on the NHS?  I'm interested to know more about this, and the costs, if any, that can be expected for an individual.  Sadly, if there is a cost it might still be out of reach for a lot of people therefore dashing their hopes?

Regards

 

Hello Bogeywoman

Unfortunately the treatment is very expensive. It was very hard but at the end, we were lucky enough to be able to raise £30K + flights for the treatment, and whilst I understand this treatment is out of reach for many, you really can't put a price on a life.

This treatment is not for every one, so we had to be sure I was eligible before spending money we didn't have. In order to save some money, I spoke to my consultant here in the NHS and they agreed to carry out MRI, CT and PET scans and other tests I was due to have in Japan, here in the UK, and sent the results and image CDs over so they could tell me if they could help me, and they said I had a chance. I was in palliative care so even a smallest probability of success meant I still had hope, I had to go for it, and I’m glad we did. 

WOW - hopes dashed for me! not many of us will be able to raise £30k !   Good luck to you - I just hope that the UK will soon be able to offer this treatment on the NHS, it sounds amazing.

Best wishes

Sharon

Wow Orchid, thanks for posting this. I hope this treatment continues to be successful for you.

A note to anyone else.... I had Critical Illness cover... took it out when I got my mortgage, forgot I had it really... only reason I rememebered was because we were remortgaging when I got my diagnosis, so it held things up with the lender/mortgage advisor. The mortgage advisor politely reminded my husband about the poilcy, and I got a pay out.

It would be wonderful to see this treatment made available to more people, here in the UK. We shouldn't knock the NHS, the treatments we have here are world class.

x x x

Hi Orchid am new to this site and was wondering how you are doing. I was diagnosed ibn July2012 with stage1B cc adenocarcinoma had rad hyst ovaries removed no further treatment. October 15 abnormal cells and now have a 3cm tumour in vaginal vault pelvic sidewall with a couple of enlarged para arotic nodes. My pelvic nodes were removed and clear back in 2012. Cant believe this is happening and am getting my treatment plan tomz. So scared that this wont work and cannot find a case of mine anywhere. Would really like to consider carbon ion treatment. So hope you are doing well. I so do not want to die yet .xxx