Re-currence after 5years!Advice please...

Hi Ladies,

Been 5years since I got the all clear.

I didn't post again after that because I wanted to forget all about it and start living again......

So...Here we go again and I am so sad to see so many more ladies having to start on the long road to recovery.

I would like some advice please.

I have just been told that the cancer is back on both ovaries and 6cm tumour within lymph node inc.

I have to have one ovary removed to check the cancer in it(not sure what that means!!).

Then 7weeks of chemoradiotherapy.

Feel ok about everything,just wanted to know if anybody else had gone through the same after been clear for so long.

By the way I had symptoms for a couple of years but yet again the consultant was sure it was endometriosis!!!

All the best with whatever stage you are at.

Keep fighting and been strong,it really does help.

Becky x

Hi Becky,

I can't really offer you any advice as I'm only a couple of months post hysterectomy.  I just wanted to say I'm so sorry that the cancer is back.  Its the thing we all fear at some point.  Though it must have been such a shock after 5 years of being clear.  I hope you don't have too wait too long to start your treatment?

Im guessing you had a hysterectomy previously?  Would you also mind me asking what your symptoms were?

Take care,

Tess xx

 

I am so sorry you have had to return.

Your story is what we all dread. It also helps me to decide to let them take ovaries rather than keep them. Can I ask why you kept them? And reiterate the question above, what were your symptoms? What was your treatment 5yrs ago?

I do hope that you are able to get all the help you need as soon as possible x Dons

 Hi

Thanks for the reply's.

First of all please do not worry.I know it's hard but most of the time doctors will do right by you and if they are even

a little bit worried they will check it out or ask for it to be checked.I am just wanting some information from anybody in the same posistionSmile

I had full hysterectomy with clear borders no lymph node involvement.No other treatment needed.I kept my ovaries because I was only 37 years old.So I was too young to go into menapause and to be quite honest, I felt I needed to stay young,physically because after the hysterectomy I felt abit old and less womanly,I don't know why that's just how it was.I feel fine now by the waySmileAlso I am not good with artifical hormones.So that was my choice and I am glad I made it,because to be honest if it wants to come back it will do.You just have to listen to your body,because after all it's your body and you know when things are not right.

I find it hard to understand why the people in the know think we would want this thing!!!It's perfectly normal to want answers as to why you don't feel well and get the right treatment for it.Whether its cancer or not!

I had 3monthly check ups for a year,then 6 monthly for 2 years,then yearly this year was my 5th and final year.

All along my gyny has made me feel like the possibillity of it comming back is as likley as me flying to the moon,and any mention of problems,feelings etc was immediatly disscounted....See GP nothing to do with me!!

After the first diagnosis(Took 3years for them to find it by the way,was high up in my cervix all smears came back clear, scans clear,came up on hysteroscopy after much bullying from me to have further investigations!)I have kept myself in good health,stayed fit,eaten healthy foods don't smoke,only drink occasionally.Tried to do everything to get back to normal and was great.Until a couple of years ago.I found a swollen lymph gland,and my hip and back ache had come back.Sent me for MRI all clear.Pain increased,sent me to physio,thought to be muscular.No improvement.I have a dog and up to that point we would do at least two hours walking a day,I was finding that I just couldn't do it,maybe an hour sometimes, sometimes not even that.

Consultant thought it was endometriosis(Found it after hysterectomy,on bladder,ovary and bowel)Treated me for that with hormone injections,which made me go bonkers!!!No improvement!

Cut to end of July just gone.Went to my fantastic GP who sent me for ultra sound.....6cm tumour,swollen ovaries enlarged lymph nodes....MRI confirmed diagnosis,2 biopsy's one awful(through the hip!)one fine through the vagina.Positive for cancer.Lymph node positive for cancer.Surgery to come to remove one ovary,then all the chemoradiation...

I would like to say,I have known alot of women that have had NO PROBLEMS at all since their initial treatment,so I am not  wanting to worry anybody with my story.I wish and hope that I am a rare case.It was just incase anybody else had re-currence after such along time.

Once again good luck to you all.Hope I have'nt babbled too much,Thanks for taking the timeSmile

Becky x

Hi Becky,

I'm really sorry it's come back :( But wanted to wish you the best of luck for your treatments. 

I am seeing a counsellor at the moment and i do really struggle with being assertive with medical professionals. She keeps reminding me that whilst they are the experts in their own field, only you are the expert on you! Words to live by I think.

Hopefully someone who has been through similar can give you some advice soon. I'm 30 and kept my ovaries, but I had the squamous cell type so hope it will be ok long term. 

Take care xxx

Hi Becky

So sorry to hear your news - as the ladies say its what no one wants to ever hear, especially at that 5 year goalpost.

You sound incredibly strong and brave about it all, I'm sure this positive attitude will help you beat this again. Sorry I can't offer advice as I too have only just had a hysterectomy (kept both ovaries for same reason as you), but I can offer support if and when you need it.

Good luck

Helen x

Thanks Helen,

Hope you get back to your old self ASAP.Don't rush it takes time,especially the tiredness

Becky x

Hi Jo 1982,

Thanks for your reply.

Good luck for the future.

Becky x

 

Hi there,

just reading through some of these old posts and wandering how ur getting on with ur treatment?

xxx dons

Hi Dons,

Getting on ok thanks.Not been easy everyday is different,with a new set of ailments,mainly digestiveEmbarassed

But the whole team at the hospital are very caring and do what ever they can to make things better.

I have got a good combination of meds now,so all good.

I have 3 more wks to go.So hope it continues been ok.I am feeling good in my mind and thats tha main thing.Nothing worse than depression.

Thanks for asking.It means alot.

Hope your recovery is going well.Its a long slog but when it's over,every month that goes by you will get stronger and stronger.

Take care. Rebecca x

 

Hi,

good to hear it's going ok. 3 wks to go will mean you then have Christmas to keep u busy!!! Always good to keep busy to avoid a downer after all the treatment stops.

glad ur having a positive experience with the hospital, that can make all the difference. I know NHS gets bad press but I always had great treatment from all the teams I came into contact with. The few bad apples can make people forget that most NHS workers are damn hard working, working in stressful situations, watching people suffer every day. 

anyway, good luck over the next 3 wks. Hope the digestion problems are then able to... Settle down! 

Much love and best wishes xxx

dons