Has anyone with clear cell cancer had a recurrence and survived it?

[SaraL]

[Sarah23]

To SaraL

I have clear cell I am on my second round of chemo, my tumour was resistant, it came back after 3 months which has been the worse news I could have had, clear cell is a hard tumour to treat, but it can be treated sucessfull its just luck how well you do,what stage was yours? and did you have sucessful surgery? its just a wait and see game, good luck!!

Sarah23

[SaraL]

Hi Sarah23

I'm so sorry yours returned. What stage are you at now? How long after treatment are you?

I was diagnosed with IC (two ops: removal of ovary and cyst, then hysterectomy and other bits n pieces) and it is now 11 months since I finished chemo. I have an incisional hernia and I cannot tell whether mild abdominal pain is the hernia or a return of the OC. I've already been back to the oncology team twice now to be checked, and thankfully they didn't find anything either time. As time goes by, I worry more rather than less. Perhaps I will stop worrying so much once five years have passed.

I do hope your treatment has been permanently successful! What treatment did you have second time round? Is CA125 a good marker for you? (It isn't for me.)

Sara

[SaraL]

Sarah23, I see you are from West Yorkshire (is that right?). I'm from Pontefract, originally. My family is still there. x

[katy000]

Hi Sara,

I too had been wondering what the answer to this question was. I'm too scared to ask my onc.

I'm on my first line of chemo for clear cell OC and also worried about recurrence.

My Ca 125 never went up either. Even when I had a grapefruit sized tumor in me it was only 30 which is considered normal.

There are many things that could be causing your pain other than recurrence. I also have IBS which causes me abdominal pain and gets worse with stress. It might be worth looking into this.

Why don't you ask for a scan, it's probably the best approach if you CA125 is not an accurate marker.

Lots of love from Katy xxx

[SaraL]

Hi Katy

I'm so sorry you have been subjected to the treatment, too. What stage was yours, and how did you find it? What chemo have you been given? How many have you had so far? How are you feeling?

I was told by my onc that if the OC came back then it was not curable. Any further treatment would be to keep it at bay and buy me more time.

It's such a shame that ours is not measurable by CA125. It would make life (i.e. the worry) a little easier. I don't want to keep having scans every time I feel pain in my lower abdomen.

I guess we have to hope for the best. I'm 11 months without the disease now and with every month that goes by then it should make me more hopeful that it is staying away forever. I just need to convince myself of that!

Love from Sara xx