When should chemo start?

[Hillb]

Hi - I was diagnosed with ovarian cancer stage 1c on 5th June but they are not starting my chemo until 24 July (I was expecting it to start this week). Does this seem a reasonable length of time in your experience? I had heard that the treatment should start within 6 weeks for it to most effective.

Thanks in advance.

H,

[Hidden]

By definition stage 1 is an early stage, you don,t say whether surgery has yet been performed. I would have thought that would be the first action followed by chemo to mop up any cancer cells. If the experts are saying chemo before surgery then sooner rather than later seems more logical. Again if a biopsy was taken then they woukd know if its a low grade slow growing or high grade aggressive, you need to speak with your oncologist to explain his timecales. They must know what urgency is placed on your condition. Love Paul x

[Hillb in reply to Hidden]

Hi Paul

Thanks for your reply. I had a hysterectomy on 20th May & 2 weeks later it was confirmed that I had stage 1c ovarian cancer ( ie cancer was growing outside ovary), grade 3 so aggressive. Thankfully biopsies have all come back clear re surrounding tissues etc but chemo recommended as may be microspores remaining that were not picked up. I did not get to see the oncologist until Monday (1 July) and she said she wanted chemo to start ASAP but the chemo team say first available appointment is 24 July i.e nearly 2 months after the cancer was removed.

I had read somewhere that chemo should start within 6 weeks to be effective so it just seems a long wait.

H.x

[Hidden in reply to Hillb]

Probably nothing to worry about as it looks like a mopping up procedure but I would ring the oncologist to confirm its ok to wait love paul xx

[wendydee]

Hi

There is info on treatment on theOvacome website, ovacome.org.uk -there is a helpline number on there too. I think that the NICE and the national cancer action team website may also give you some info on waiting times for chemo treatment. I would tend to agree, it does seem a long wait. Is there any point in ringing the dept and getting put on a waiting list for a cancellation?

All the best

Love Wendy xx

[Hillb in reply to wendydee]

Hi Wendy. I am on the cancellation list but thank you for suggesting it. I have tried to find details on the NICE website but can't! But I'll try your other suggestions too. Thank you

Hx.

[charlie12]

Hi there

Sorry that you are going through this. You are probably still suffering the after effects of the surgery and the diagnosis and a sudden surgical menopause....all a terrible shock to the system.

Personally I have never heard about this 6 week recommendation. But do give Ruthbthe nurse on this site a call to check.

Good luck

Love and healing hugs

Charlie xxx

[Hillb in reply to charlie12]

Hi Charlie

Thanks for this - your reply made me cry for the second time since I was diagnosed because it is probably true - although I would still like some reassurance. The answers on this site have given me lots of places to look

H.x

ps the first time was when i was told how long it would be before chemo starts!!

[Pimkin81]

Hi there- glad you have found the site (sorry for the reason) but there is so much knowledge and support here that I am sure it will help.

My oncologist told me that 6 weeks is optimum for 'mopping up' chemo- something to do with the time it take for 'seeding' to develop. However, he was happy for me to 7 weeks due to fertility treatment and said he believed there would be no adverse effects. I would check with your onc just to put your mind at rest. I believe the NICE guidelines so no more than 8 weeks post surgery so you are within that timeframe if it gives you any comfort? I know how you feel- just wanting to get started and get it over with!

Claire

[Hillb in reply to Pimkin81]

Hi Claire

Yes, you are right - I do just want to get it started! My op was on 20/5 and my first chemo not until 24/07 it's just ovet 9 weeks. I'm sure it is ok but I would like some medical confirmation and this site has given me a few places to try to find the answer.

Thanks you.

H.x

[Pimkin81]

Sorry for the mistakes- typing on iPad!

[Hidden]

Seems a while... But since it is a mop up job and they thankfully already got the nasties out I would not worry too much -- but still push and barrack to see if you can get it accelerated certainly, as it is a while. Any delay is too long, in my view.

Good luck with it, and there is a ton of info on here about what to expect

Love

Sue xxx

[Hillb in reply to Hidden]

Thanks you Sue

H.x

[Sunfleury-UK]

Hi H, I was similarly staged 1c and it was pretty much 8 weeks from surgery to first chemo last autumn/winter. I had some complications post-surgery which I believe slowed things up a little. I do think it's important that you don't get pushed into a state of passivity ( unless of your choosing) so do ask whomever you have the better relationship with-CNS, GP, Oncologist. It's your body and your life and you're allowed to push for answers!

Best wishes, Sxx

[Hillb in reply to Sunfleury-UK]

Hi S

Thank's for your reply - it is easier to sit back and accept everything but I won't!

H.x

[Aurelie]

Hi there - I was diagnosed with stage 1C fallopian tube cancer on March 27th. Like yours, mine is a mop up job and Chemo wasn't started until 7th June, but I wasn't too worried about the delay, which I thought was to give the body time to recover from major surgery and also, hopefully, because it wasn't urgent.

Unfortunately, my second treatment, which was due last Friday, couldn't go ahead, so my fingers are tightly crossed that all will be well for this Friday - don't want any more delays.

Do hope your appointment comes through soon and that all goes well for you.

Jill x

[Hillb in reply to Aurelie]

Thanks Jill

I hope your chemo goes ahead on Friday.

All best wishes

H.x

[Whippit]

Dear HilB

I think when we start this journey we tend to go along with whatever is suggested to us because we don't know any better. Obviously you don't want to upset the clinicians or CNS because this is a new relationship and your future is in their hands, but having said that I think I would go back to the CNS and explain how much this delay is worrying you. An approach like that doesn't make you look too pushy but they should take it seriously and sit down with you to reassure you or discuss alternatives.

You don't say if you're having single or double agent chemotherapy. Carboplatin only takes an hour or so and it's therefore easy to book a place. If you're having double agent with Taxol it poses more problems because it takes up to 6 hours and you may also request the cooling cap which adds a bit of time and bother.

I was told I couldn't have Taxol because there had been a booking blunder. I wish now in hindsight that I'd pushed to see if I couldn't receive it at another centre. Recently a friend started Caelyx and there were no places available in our local centre in Cardiff and the Vale so she started the treatment 25 miles away at another hospital which was actually in another health board.

It just shows alternative arrangements can be made when it's necessary. Let's hope they can reassure you that it's not necessary to bring the chemotherapy forward.

It looks as though you've got loads of helpful advice above. You must keep checking with your local team until you're satisfied with their answers and you are no longer worried.

best of luck with it. xxx Annie

[Hillb in reply to Whippit]

Thanks Annie. I am having taxol and carboplatin so when you explain it like that it I can see that a 6 slot would be harder to find. Even so, it seems a long wait but as you say, there has been lots of advice on here which I need to follow up,

H.x

[Snoopy01]

Hi H

Welcome to the lovely circle if friends. I was diagnosed with stage 1c grade 3 agressive at the end of January and started chemo end of february - if that helps re timescales. I had a hysterectomy end of January and onc wanted me onto chemo relatively quickly. Hiwever i git the impression as i went thru the chemo that i could have started it a bit later in reality as uit was to mop up any stray cells. Annies advice seems really sensible though , about going back to your CNS to say you are concerned about the delay.

Big hugs and let us know how you get on

fiona

Xxxx

[Hillb in reply to Snoopy01]

Hi Fiona

I will talk to my CNS today and also try some of the other suggested organisations etc to try to get some reassurance that the delay is not disadvantageous. Your time scale was what I expected to be honest.

H.x

I wouldn't worry about typos

[Snoopy01]

Sorry about my typos ! X

Fiona

[ginger69]

Hello H,

Sorry that you have been diagnosed with this disease, but hopefully you will find assurance from all the wonderful people on this site.

I too was diagnosed 1C with aggressive cells in Oct 2011, surgical procedure of hysterectomy performed in September 2011.

I must say I felt quite anxious like you, that chemotherapy should go ahead as soon as possible, as you just want to 'Zap' the buggers that are left behind, if any! I had the golden treatment of carbo/taxol approximately seven weeks after being given diagnosis.

As Annie, said the administration of both these 'toxins' takes time and I suppose they have problems in slotting in extra patients, but I think I would question as to why you cannot be seen sooner, perhaps if you challenge them, they will find a way! After all, it is unfortunately who ever 'shouts the loudest!!!'

It is not a 'holiday camp' that we are booking it is a treatment that will help you have a better quality of life, but sometimes there sensitivity is rather lapse.

Push...push..push

Please let us know how you get on!

J xx

[Hillb]

Dear All

I am not sure if this will work but I'm hoping by answering my own question everyone who replied will see it! Thank you all so much for your very helpful comments and advice.

The good news is my Chemo should now start next week

I spoke to the Chemo nurse today who explained that there were simply too many patients to be seen and not enough nurses to see them. She also told me that the date of 24/7 was for my introduction to Chemo session and that the Chemo itself would not start until the following week! Although there are time slots for the Chemo itself, there were not enough nurses to run the introduction sessions and they had a significant back log of patients. I am afraid I threw my toys out of the pram at that stage!!

The Chemo nurse rang me back an hour later to say that she had now spoken to the Chemo manager who agreed to authorising overtime so that the nurses could run some extra introduction sessions. I now have mine on Friday 5th July ( along with 5 other people who were also waiting for the introduction sessions) instead of 24th July and my Chemo should start next week instead of the end of July/beginning of August.

I apologised to the Chemo nurse for making a fuss but she thanked me and said it gave her good reason to go to her manager to try and clear the backlog. So I am glad I made a fuss, not just for me but for the others that have also now had their sessions brought forward.

As to an answer to my actual qusetion - the MacMillan helpline say that Chemo shoud ideally start within 12 weeks of the op but for myself I still think if you physically able for the Chemo, 12 weeks is too long.

Thanks again to everyone for their help and support. I wish you all well.

H.xx

[Hidden in reply to Hillb]

Well done, people power is so important love paul xx