Re Occurance

Hi

I was diagnosed with Cervical cancer in November 2013 stage 1B1 , The tumor was large but there was no lymph node involement and my margins were clear.   I had a radical Hysterectomy in December 2013 however my Overies were left due to my age (41 at the time) and being able to have a natural menopause.  The op went well and i was refered by my Gyneacologist to an oncologist as she thought i may benefit from some Chemotherapy/radiotherapy .

I saw the Oncologist in January 2014 who advised me that i did not meet the criteria for treatment , criterial being 1) size of the tumor 2) lymph node involvement and 3) how clear the margins were , i only met one of the 3 which was the size of the tumor.  I have remained under his care since,  having 3 monthly check ups.  I January this year 2015 , he sent me for a routine screening CT scan which i had in March.  Early April i was sent a CA125 blood form in the post and was to have this before my Oncology appointment at the end of April.  From this point i suspected something was wrong.  I attended my Oncology appointment and was seen by a Consultant gyneacologist who advised me that the CT scan had picked up a 7cm cyst however i was advised that the "cyst looked ok and didnt need to come out urgently"   I was therefore booked to have this removed.   I had this cyst removed and my left overary on 06/07/15.  I attended my next 3 monthly oncology check up 27/07/15 to be told it was cancer however they were unsure as to if it was a overian cancer , a spread from somewhere else or cervical cancer reoccurance i had to wait for more pathology results and that that they were comparing my original sample from the radical hysterectomy to this new sample.

In the meantime i was sent for a PET scan

On 10/08/15 it was comfirmed by my Gyneacologist that this was cervical cancer reoccurance  , however the PET scan was clear.  My Gyneacologost referred me back to oncology for chemotheraoy and radiotherapy to blast any cells that the scan may not of picked up .  I remained quite postive .

I was seen by a different Oncologist yesterday 19/08/15 who put the fear of god in to me , he advised that as the cyst was attatched to the illiac artery " he would bet the is cancer still there somewhere "  he said i will begin 5 weeks of chemotherapy and radiotherapy in about 2 weeks time,  he then went on to say if this does not work " there are other options" i asked what the other options were,  to be told " palliative Chemotherapy" 

I am really struggling with that if this 5 week course of treatment does not work i will then be palliative ,

I am changing my diet and excerising more to try and keep as healthy as i can be , i have also read about large doses of vitamin C helping fight cancer , has anybody else heard of this? I asked the oncologist about this but he said he did not know enough about it so could not answer.

Although i accept the cancer is back , I would really like a 2nd opinion on treatment options , im really scarred that after 5 weeks of treatment there is the possibility of being palliative.  Does anybody know of any Cervical cancer specialists anywhere in the counrty , NHS or private where i could seek for a second opinion ?

The Oncologist i saw yesterday says " i am an unusual case " when he asked me my age and i said i am 42 he replied he normally sees people born in 1942 !! I felt he was quite negative and he contradicted himself on occasions such as talking about me being palliative but then in the next breath talking about me being young and living a long time with osteoporosis ( side effect from the treatment)

If anybody could offer any advice i would be very grateful.  If anybody knows of any specialist centres anywhere i would really like to hesr from you .

I have booked an appointment to see my Gp to discuss, and i plan on ringing Mcmillan to see if if they have advice.

Many Thanks

 

Hi, I am so sorry to hear of what you are going through.  I'm not sure I have much to add i'm afraid but I didn't want to read and run.  I don't know which are the specialist hospitals but I do know that you have the right to be reffered to any NHS hospital of your choice.  I have heard strories of women getting themselves refferred to the Royal Marsden in London.  

I have no experince of this but i'm sure lots of others will be along to offer advice.  This link may also help with refferring yourself and your GP is the best port of call.

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

Taking control of your diet and health is a great thing to do and will help you feel more in control and proactive.  It will also prepare you for the treatent ahead and get you fighting fit.  I don't know about vitamin C but a good diet full of fruit, veg, wholefoods and juices and avoiding processed foods goes a long way towards your general health and a strong immune system.

Try and stay positive, a consultants 'bedside' manner and social skills with patients vary wildly.  It sounds like the latest consultant was not great at communicating at all.  You need someone you have confidence in and you feel is 'in your corner' and being positive.  I hope you find someone to give you that. 

Thoughts and prayers are with you.

N x

 

Hi

Thank you so much for your reply I have also read about the Royal Mardson and will talk to my GP about this tomorrow , The consultant I saw yesterday came across as very negative , I didn't feel like he was in my corner at all .  I am trying to stay positive but after yesterdays consultation feel very tearful, thank you again for your reply it's very much appreciated , 

thank you 

x

 

Hi greeni

im so sorry to hear what ur going through.  I'm just having initial treatment so can't add much about ur situation the only thing I can help with is the vitimin c thing. I agree to get as healthy as you can be before treatment but watch what you are taking when treatment starts as some things stimulates cell growth which goes against what the chemo is doing. I think I read in a McMillan book to avoid large dose vitamin c during chemo.  The chemo team will meet you before hand so I would go armed with questions about anything you want to take.

i hope things get better for you and my thoughts are with you.

Kimmy

Hi :-)

Big hug (((((HUG))))) So sorry to hear what you have been going through but please do try to keep your chin up :-) The combination of 5 cycles of chemo together with 25 blasts of radiotherapy really does knock most cases completely on their heads. Kimmy is quite correct in that you will probably given a diet sheet for while you are having your treatment and if it's anything like my diet sheet it amounts to little more than bread, rice, apples and bananas, so no monster doses of vitamin C there!

There is also a place called The London Clinic which is private, so probably costs a bob or two but might be worth approaching just for the purpose of a second opinion.

Be lucky :-)
Tivoli

Hi

Thank you both for your replies it's really helpful and really I appreciate your advice and support. 

Thank you 

Hi Greeni,

I had recurrence in my pelvic lymph nodes,ovaries and pelvic side wall.

The treatment worked ;-)

I am on 3 monthly mri's and check ups.So far no sign of disease(Finished treatment

19 months ago)

The recovery for me has been long and painful.The fatigue has got worse along

with the pain,but NO cancer.

I have long term nerve damage and feel old before my time,but I am alive and

here to tell the tale.

I struggled to find other ladies with recurrence,I hope they are out there having

a good life ;-)

If you need to ask anything please do.

It sounds like the treatment they have for you will do the trick.

I got some councilling to get my head round things.It was the

best thing I did.Second time round for me was much harder.

All the best

Becky x

Hi Rebecca

Thank you for your reply, I to have struggled to find any ladies with reoccuurence , I was really pleased to read your message and that your now in remission ,  it's made me feel more positive .  This time does seem so much harder , I have contacted the CNS and she is going to refer me for some counselling . I have my planning scan on Tuesday so will hopefully begin the treatment soon after.  

Thank you again 

x

Hi Greeni

So sorry to read what you are going through.  We all fear being diagnosed with recurrence but I'm sure there must be loads of ladies that get through it successfully.  I can totally understand you wanting a second opinion and I would do the same myself.  My consultant specialises in gynaecology oncology and does practice privately as well as through the NHS so if you wanted any details please pm me.

Sending you lots of luck and hugs.

Cheryl,xx

I am glad you are feeling abit better about whats going on.

Everyday,sometimes every hour, you will be up and down.

But always keep in mind your team wants to do the best for

you,even if your head is telling you something different.I don't

have a bond with my oncologist,but thats fine she is the best at

what she does.I can get tea and sympathy from other places.No

body can be all things to all people.

I'm not sure what the other consultant hoped to achieve by telling you

worst case scenario.Nobody can predict how things are going to pan out.

That is the one thing I have learnt,they can make educated statements,but

we are all unique.What works for one may not work for another and so on.

Keep doing what your doing looking after yourself.Keep hydrated and try to

avoid any extra stress.

All the luck to you

Take care

Becky x 

Hi,

I just wanted to post to say that I am 7 years in remission after a recurrance. Hopefully your chemo/radiation treatment will knock this horrible disease on it's head. Good luck with it all! :)

hi julie

Thank you so much for your message , reading messages such as yours makes me feel much more positive , I have a planning scan for the treatment tomorrow , so should start fairly soon.  I'm very scared but trying to stay positive , 

Thank you