Hi
I know this question has been asked before but i am really worried. I am due to start chemo on 15 April - that is 10 and 1/2 weeks after my lumpectomy.
I am on tamoxifen but will have to stop soon before the chemo starts.
This just seems a really long time to wait and I am now getting in a panic as to whether it will still be effective or not. I have read somewhere that 12 weeks is the cut off and 10 1/2 is not that far off. I did contact chemo unit but the nurse said they were really busy at moment which was really helpful.
Has anyone else had to wait this long?
Should I complain and who to my oncologist?
If anyone can help would be really grateful especially if their own oncologists have talked about time scales.
Thank you Melx
HI there
Just to reassure you I hope I had a WLE on 5th Oct then failed margins so a MX on 29th MAtch. I developed a seroma & clot & then got an infection. Long & short meant I didn’t start chemo til 17th Dec about 11 weeks after first op. I queried the 12 week cut off as well but was assured this had a minimal effect even after that and in any case the research was to show that it was SAFE to delay upto 12 weeks without ANY detrimental effect - so please do not worry it WILL be as effective.
On the other hand of there is no medical reason for the delay then I would query it as presumably you just want to get on with it as sooner started sooner finished so I would talk to you ONC & BCN & query the reason for the delay as I think standard time is 4-6 weeks after surgery.
I am just waiting for my final dose on 8th April - I had 3 FEC/3 TAX. It is a long old haul I’m not going to pretend it isn’t but you will and do somehow get through it - well because you have to really. listen to your mind & body, rest when you need to & if you end up in bed doing nothing for days just go with it.
this formum is a great support with loads of great advice for getting through & loads of us who are getting through to the other side as well so I hope it helps
Jo XXXXXXXXXXXXXXXXXXXXXXX
HI there, my OH is an Onc and I know from that hosp that there is no way they would start your chemo too late - its just in no one’s interests! I found it really interesting when I had mine that they only started me when they could fix a clear run of appaointments at the right sequence - but then of course our boddies don;t follow the rules do they and we sometimes have to delay! If you are really keen to get going you could ring the chemo people and ask if anyone has dropped out to create a slot.
best Nicola
They also need to be VERY sure that you’ve healed properly following surgery, as chemo can slow down healing.
I think if it were me I would ring the Oncologist and state your fears. Don’t assume your Onc is aware of the delay. I did have to push for my chemo and got it done quicker as a result, I should say though that I had chemo prior to surgery. The Oncologist hadn’t been aware of my wait and when he heard was ‘incandescent’ according to his secretary. I got it the following week.
Each case is different and it may be that this will be fine for you. If it is then you need reassurance from your Onc so you’ve not always got it in the back of your mind.
I did have various delays during my treatment for one reason and another.
Hope it all goes well, Elinda x
Hi all
Just a quick question, does anyone know how long you have to wait to see an onc to discuss treatment, i had lump removed on 18th Feb and still have not heard from them.
thanks
Annette
Annette, get on the phone to your BCN or your surgeon or one of the secretaries and push very hard for your appointment. It does sometimes happen that people get “lost” in the system, so you should certainly have heard something by now. Have you had a follow-up appointment with your surgeon yet?
Hi CM
I have been trying to contact bc nurse left a couple of messages for them to call me but as yet nothing.
My last appointment was about 3 weeks ago with surgeon who said that i had clear margins and would possibly need chemo as well as rads and tamoxifen.
I just want to know whats happening next.
Annette
HI Annette
This is a long delay compared to my rate of progress through the system. I have just come back from seeing the Onc this morning, had my op on the 12th march and results on the 24th. By the time I got home on 24th there was a message to phone the hospital. Don’t be afraid to ask. From what I’ve seen of hospital admin, there’s lots of paper shuffling and could be easy to misplace someone’s notes. Good luck.
Jane
Thanks Jane
I am trying to contact bc nurse but bloody answer machine constantly on. Left message thursday 2 on friday and 2 so far today. Its driving me mad. The onc is at a different hospital which does’nt help.
Wow you got seen really quick hope it all went ok for you.
Annette
Hi annette
If I were you I would contact the oncologist since the BCN is not returning your calls. My Onc is also based in a different hospital, so it shouldn’t be an issue. I had mastectomy on 22nd August 2010, saw Onclogist on 3rd September and started chemo on 15th… Plus I had all the scans in between!
xx
Hi lazycat
Wow i think i better kick some butts, everyone seems to be getting on with treatments except me, (not that i really want to of course) but it has to be done. I will get the yellow pages out to find number of the hospital. (No ones given me any info except name of hospital).
Thanks
Annette
Hi Annette
Just so that you have some further comparisons, I saw my ONC 2 weeks after dx. But I started my chemo prior to surgery. However, I did have some delay to get my operation date fixed and I kicked up a fuss. BCN was not responsive and I threatened to come to the breast clinic and not leave until I had seen the consultant. In the end operation was brought forward, but this experience taught me that you have to speak up for yourself. With every stage of treatment or appointment, check who is going to contact you & when and how you can chase things up if needed.
Good luck!
Nikki
If your BCN isn’t getting back to you, get hold of your surgeon’s secretary and see if she can dig around in your notes and at the very least give you the name of the oncologist you’re supposed to be seeing. She might even have a contact with the onc’s secretary, so see if she can do some chasing up for you. The doctors get lots of mentions, as do the BCNs, but some of the most useful people working in the background are the specialists’ secretaries who can be a real ally if you treat them properly. So ring your surgeon’s sec tomorrow and she’ll be able to give you the number to call for the onc, or preferably the onc’s sec.
Good luck.
Hi CM
Just got hold of bcn she was on holiday only got back today. She contacted onc for me and i have an appointment for next weds. Just thought i would let you know.
Thanks for the advice.
Annette
Annette, that’s brilliant, what a relief for you. Do keep us posted on how things go for you. I know you’re probably still in The Waiting Room as you still won’t have a full idea of what they’re going to do [with/for/to]* you but it’ll be better once you know for sure.
* delete as appropriate, depending on what mood you’re in, they’re all correct at different times.
Good news Annette!
xx
Thats great news Annette, glad you took advice and phoned up, the waitng is hard enough without uneccessary waiting, good on u and good luck xxxx
Hi Guys
Just got back from seeing onc for the 1st time,
Still none the wiser
He has given me the choice of AC Chemo with rads & Tamoxifen or
Zoladex for 3 years Rads and Tamoxifen, think i got some reading to do. Would have been so much easier if he said one or the other.
I have to let him know next Tuesday.
Any advice greatfully received.
Annette
Did he give you any indication of what the implications are of the different options? How on earth can they expect us to make such an important decision if we don’t have the information required to make an informed decision? Ridiculous, and also very frustrating for you.
I suggest you have a long chat with your breast care nurse who may be able to give you a bit more background information on how the different treatments suggested would impact you. It’s possible the onc is taking into consideration your home situation with hubby, as chemo is without doubt a big strain on the body and could leave you feeling flattened just when you will need to have a bit more oomph, but we can’t know what was going through his or her head, so you’ll have to ask.
Best of luck, and do pester to get someone to talk to you, it’s impossible to expect you to make a decision if you don’t have enough to base your decision on.