Why the wait?

[juliamillen]

I have to go back on chemo for a recurrence but my oncologist said I could wait 6 weeks before I started treatment. Why the wait?

[Lyndy]

Hi Julia

They typically don’t treat recurrence until you are symptomatic...so if you are ok they may postpone giving you a chair in the unit. I found a great difference between my initial diagnosis and the way I was treated when they thought it was back. Very lucky for me as after 18 months waiting for symptoms to start they decided it was a false alarm! Wishing you an easy time and a return to health very soon xx

[Lindaura]

Dear Julia,

I am so sorry that you must face the dreaded recurrence.

I for one believe in treating quickly. Who knows what those buggers get up to when allowed to roam unchecked?

Fortunately, my Oncologist is ready to treat when both the CA-125 starts doubling, and the CT scan shows unwanted renewed growth.

You have been relatively lucky to get a year off, but now you must get back in the ring and do battle.

Usually, with first recurrence, you will be offered Carbo and Caelyx, which, with a little self indulgence, can be tolerable.

My suggestion is , unless you have other things you need to do now, to get in order, is for you to ask for treatment now, rather than later.

Otherwise, you will stress, and your loved ones will stress too, knowing you are not in treatment.

Once again, I do sympathise with your predicament, but be assured that most of us have weathered this storm and you will too.

Here is a virtual hug.

Be brave,

Laura

[Katmal-UK]

Hi Sorry to hear you are facing a recurrence. I think the wait depends on your oncologist. I'm lucky that mine realises that the waiting would have a detrimental effect on my mental wellbeing and I have started chemo (2 recurrences) within a few days. If you, like I, don't feel you can wait then discuss this with your oncologist. I wish you well, Kathy xx.

[bamboo89]

I've got a feeling that maybe the chemotherapy wards may be over subscribed in some areas, so they probably have to prioritise people in terms of urgency of treatment. Why not ask your McmIllan nurse about it to see why you 'can wait' six weeks for treatment if you are unhappy about it, and make it plain you're not happy to wait that long.

The chemo nurse I saw recently told me that women fall into two distinct groups when a recurrence happens - those who want to have the chemo at the first hint of a raised CA125 or some evidence on a scan, and those who only want treatment when they are symptomatic, i.e. they start noticing pain or not feeling well or get very tired or whatever. Its to do with whether the woman concerned rates quality of life over a perceived idea of quantity - clearly, if you feel okay when you start chemo, you're not going to once you do start, which is where the 'quality of life' bit comes in. I fall into this second group, but if you don't, then I suggest you make your feelings plain to the oncologist via the Mcmillan nurses if you don't have another onco appointment soon, and try to get the treatment brought forward, or at least ask why the oncologist thinks its okay to wait six weeks, which may reassure you.

Miriam

[delia2]

I like Miriam’s analysis. I’m all for quality of life. I’ve had pain since August but waited for my Sept. 24 appointment to deal with it. After two scans my onc scheduled my first chemo for two weeks after determining the cancer was back. It would have been one week but it’s a holiday in the US today so we had to wait till next week. I wanted to drag my feet but now I’m getting anxious to kill the cancer. I’m working on visualizing the tumor shrinking, for what it’s worth.

[dramaredgerbil]

Hi Julia. I had a recurrence in February which showed on the CT Scan. I started treatment 5 months later. This is because I wasn’t symptomatic and a large study showed that starting treatment earlier made no difference to overall survival. I decided to go travelling instead.

[bamboo89 in reply to dramaredgerbil]

That's very interesting, I hadn't heard about that study - it certainly explains why oncologists are more relaxed about treating recurrence, and why the senior oncologist, after I had some lymph nodes removed in June, said that if I had chemo as a follow up, 'there wasn't much for it to do'. Fortunately, it chimed with my own feelings on the subject! Are you able to provide link to that study - I'd quite like to read it?

Miriam

[bluepeterella]

I’ve also seen the study that says early intervention for a recurrence makes no difference unless symptomatic. When I had my recurrence I had severe ascites affecting my appetite and breathing so I was pleased to get on with treatment. If I’d had no symptoms i would have delayed as long as possible! You can do a lot of living in 6 weeks, I’d make the most of it.

[bamboo89 in reply to bluepeterella]

I don't suppose you could provide a link to that study, or give me some idea what it's called so I can find and read it?

Miriam

[Artgreen]

I’m so sorry to hear this but like Miriam to me personally it makes sense to delay until there are symptoms which are interfering with your quality of life but then mine is low grade so chemo is not very effective.

That’s why I’m throwing everything else at it with my oncologist’s approval as so many trials are being carried out for other cancers with these off label cheap drugs. I do rattle though.

It’s worth researching if you have the time and interest about How to Starve Cancer by Jane McLelland aswell as have the chemo as it is about killing the stem cells as well as the daughter cells.

Wishing you all the very best and hope you feel well for a long long time

Alex x