I was diagnosed with breast cancer on 27 Jan and then in Feb told that it has spread to my lungs. My treatment plan was changed from mastectomy then chemo followed by radiotherapy to chemo first. The consultant said my case would be passed to the oncologist as a matter of urgency. I saw the oncologist on 16 Feb and was told treatment would start within two weeks. I have now chased the hospital twice to get my first chemo date and was informed by the BCN just a moment ago that it would 15 March (that’s four weeks from seeing the onc). She said she had told the powers-that-be that it is urgent but they say that this is as soon as I can be fitted in. The BCN said she would go back to to onc either today or on Monday to let him know what is going on. I don’t know how things work - if the onc has any clout over the chemo people and can speed things along. I certainly hope so.
I don’t know if I’m justifiably angry (and very scared that I’ve had this disease for who knows how long with no treatment) or being over-the-top about it all.
Sorry you have just been diagnosed I can imagine how scared you are and anxious to get started on treatment.
From my experience I would say that your oncologist is the one who could get things moving for you - i would make contact directly with him or his secretary tomorrow and push for an earlier start date (unless there is some medical reason for delaying) you are not being unreasonable so don’t accept the delay without a challenge or at least a proper explanantion.
Hope you get some more positive news tomorrow.
best wishes
Smartie x
I think this is unacceptable - and probably outside NICE guidelines. If you don’t get a suitable response tomorrow I think it’s time to start stamping and shouting (politely of course). Don’t worry about being thought a pain - it’s important!
I agree with what Smartie says - When you speak to the BCN tomorrow it might also be worth enquiring if you need to put your concerns in writing - that often has a galvanising effect.
Thanks D, I intend on making my point firmly (but politely) to the nurse and onc (or his secretary) tomorrow (and, going by my curent mood to the postman, milkman and anyone who has the misfortune to cross my path).
One thing though, you mentioned NICE guidelines and someone else (by phone) mentioned something about a 2 week rule. I’ve tried googling and can only find a 2 week rule which applies to initial referrals from GP to breast unit. If anyone knows of a 2 week rule or guidelines that might apply to my case please let me know - it’ll be more power to my elbow tomorrow.
Hmmm… I may have mentioned NICE without thinking it through properly (sorry). I know that there are recommendations about the timing of treatments for primary breast cancer, but I don’t know if there are similar ones for people with a secondary dx.
Hopefully someone who knows more about it than me will be along soon.
Not much comfort, but have a ((((((hug)))))) while you’re waiting.
Dx
Hi… Sorry you are having a bad time… If you have no joy I would go straight to pals (patient help) they are there for complaints and would know about the guidelines you are asking about… Every hospital have a pals team…
Take care of yourself and hopeyou get it all sorted x
Also thanks Ashleigh for PALS suggestion - I’ve found contact details for my hospital and that will be another avenue for me … looks like tomorrow is going to be a busy day for me and my many pronged attack!
Hi Historygirl,
I can understand why you are angry, waiting is the worst bit of all this. With regards NICE Guidelines it states that chemo should start within a month from surgery, I am not certain how this applies if you are having chemo first.
All I can say to reassure you is that as long as treatment has been started within 3 months then there is no significant difference with regards successful outcome.
Non of this helps though when it is you that is the one that is waiting, hope you get it sorted.
Evening History Girl.
Pals is the official way to register a complaint, but how about a letter to the Chief executive with a cc to your GP, Oncologist, and the Breast Cancer Lead Clinician. They don’t like things re delays etc in writing too much, it doesn’t look good, but who cares!!!
It is probably lack of space / slots in the chemo unit…but perhaps that too needs to be addressed if it is due to insufficient staffing levels or equipment ! Your letter might highlight it for them.
I am so sorry this is happening to you. It is all such a C…p time. I had a long wait for surgery, that was neatly brushed over with the explanation that the two consultants needed to do me. The main problem these days is booking for most things is done by individuals who do not have patient contact. Even a consultants’s secretary finds it difficult to slot somebody in.
I hope they can get you started ASP. Jump up and down +++ those that shout loudest etc…
Biggest of Hugs
Cackles
On Friday I contacted the head of oncology’s PA and then the BCN to tell her what I’d done (explaining that I wasn’t criticising her in anyway just trying every avenue) I also mentioned the possibility of contacting PALS. Anyway the upshot is that I had a phone call on Friday saying that the BCN, onc and Breast Unit consultant are teaming up to go back to the chemo organisers to get things moving forward. I’ve been informed that I should be contacted again on Monday with a quicker date for chemo. Here’s hoping! Of coure if I don’t hear by lunchtime I’ll be reminding them of their promises.
Thanks again for all your advice. I’d no idea I could be so fiesty!
You’ve had good advice from other posters, re what seems to be an unacceptable delay. Hope you see action soon!!
Just wanted to say something about any fears you might have (or others in a similar situation) re whether the disease might get worse before treatment starts, considering (as you said) that you’ve probably had bc for some time and it has already spread.
The oncs need to know how far it has spread - which organs are affected - and whether hormonal treatments or herceptin could help, before any treatment is started. This all takes time: scans and more scans, maybe a biopsy. It happened to me… back in July 2006 when I was dx, followed by bone mets dx 3 weeks later. I started my first treatment 6 weeks after my primary dx… and I’m now doing well on my sixth treatment (capecitabine tablet chemo) despite having liver mets too.
Once you get your treatment plan, life should (and I hope it will) get a lot easier.
Thanks Mrs B. Glad to hear you’re doing well. If the worst comes to the worst and they don’t move my chemo forward it’ll be taking place seven weeks from primary dx - so maybe not as bad as I thought. Although I’m still hoping for sooner, especially as the onc said it should start within two weeks of seeing him (I saw him on 16 Feb).
Right, 5.45pm, I’m entitled to a sherry now I think.
Glad your feistiness paid off. I think it does help to stay on their radar.
Had a lovely lunch at the Mytton & Mermaid with some of the Shropshire crew, our next one will probably be towards the end of April. Keep an eye on the Shropshire thread, if you wanted to come along, you’d be more than welcome.
Historygirl – Evening wee feisty one. ( that is what me grandfather called my grandmother). It is hard to make a fuss but sometimes necessary. Long waits are unacceptable in many situations and that is why some targets were set. They are not all encompassing though. Tests have been speeded up etc but they do take time and are vital in getting the correct treatment for Cancer Patients. You could always join the other side and attend the Cancer Patients partnership Meetings and have your say in improving things for others both locally and Nationally. Look around the Unit and you will see the advertising posters. They are always looking for patients to do Peer reviews etc… It is a typical bureaucratic type of meeting . Long drawn out with lots of workshops and chit chat. I did it from the other side of the fence once upon a time and now find myself as a Patient rep. It feels very strange but I know it is so much about improving things so I sit through the boredom.
You won’t want to do it during the chemo but perhaps in seven months or so it might interest you.
The sherry sounds good but were you fifteen minutes early!???yard arms and all that!!!
Sleep well, I don’t think I will be getting much tonight but never mind.
Well I’m back to jumping up and down in frustration! Earlier this monring my BCN called to to tell me that the chemo people have been unable to bring my appointment for starting treatment forward (despite the oncologist saying it should have taken place within 2 wks of 16 Feb, the date given is 15 March). She said that they have acknowledged that there is a problem within the chemo dept which has been brought to the Chief Exec’s attention, with my case specifically mentioned. She advised me to contact PALS.
So I’ve just emailed PALS (the contact was on lunch so I couldn’t speak to her) and I’ve also emailed the Chief Executive.
This time yesterday I was at the Haven in Hereford getting advice on dealing with my horrible anxiety levels … those levels have just gone several notches higher (something I didn’t think possible).
Hmmm, one hour after emailing the Chief Exec of the hospital (and copying in PALS) I got a call from the chemo unit bringing forward my appt to 5 March (a ten day improvement).
Now I’m just frightened instead of impatient, angry and frightened - so that’s an improvement too.
Whew - have a sit down and a large sherry, then - maybe tomorrow, have a think about getting yourself prepared for chemo.
Which regime are they putting you on? They’ve probably given you some leaflets (I think it’s usually the Macmillan ones from RSH) about the drugs you are going to be on. Reading about the potential SEs is scary, but take heart - it would be unusual for you to get all of them. Chemo isn’t pleasant - but it is doable.
Not sure if you’ve found it, but there is a ‘Top tips for coping with chemo’ thread. And there’s a starting chemo in March thread up and running.
I’ll keep my fingers crossed for you that all your SEs are little ones.
Well done Della (I think that is your name). It’s very frustrating and not what you need right now at all. I’m sorry you have had this experience as I had a very different one and ‘my team’ were full of urgency. I think it really does depend on the particular Trust.
Please PM me any time if you need help or support with the chemo. I had 3 FEC and 3 Tax and had great results from them which is just as well as if they hadn’t worked I might be awaiting trial for mass murder right now ha ha!