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4-6 Week Wait to Start Treatment

6 REPLIES 6
Debbie1964
Member

Re: 4-6 Week Wait to Start Treatment

Hi sarah, i just wanted to say, i was diagnosed 5th of may, my op was scheduled for 8th june, but i was told it may effect my well being for my holiday, i went back to see my surgeon yesterday, and they have rescheduled and my op is now 25th of july, i was told i will then wait two weeks for my pathway, in the mean time there starting me on hormone drug to maintain tumour, and they have told me to go and enjoy holiday and i am not about to get any worse in five weeks, so do try not to panic i know its hard, i was very anxious to start with, but my team really did reasure me

Debbie xx
SarahBristol
Member

Re: 4-6 Week Wait to Start Treatment

Thanks for the replies ladies. Feeling a bit calmer this evening as I'm chasing up the second opinion route. My conversation with the nurse about the waiting time wasn't very reassuring. She basically said I'd be living with the lumps a while so a month or two more wouldn't hurt! Also said that it would slow things down even more if they send me to the main hospital in Bristol which I don't believe. As soon as I chased it up though, I suddenly had phone calls about other appointments e.g. dietary so think it helped a bit. 

 

It's not a good feeling to not trust your clinical team so definitely going to get a second opinion in the next few days. The NHS hospital also said that the private clinic can request my CT and immuno results before the NHS consultant gets back from holiday. Having a Harley St doc adding a bit of scrunity will hopefully speed things up and help me make informed decisions about the best place to be treated.

x

Anniej
Community Champion

Re: 4-6 Week Wait to Start Treatment

Hi Sarah, I'm so sorry that you find yourself here. I don't feel able to offer advice, but hoping that my timescale will reassure you a little. You talk about path results, but mine took two weeks, which I was assured was normal. Then, as you know, there's a weekly team meeting to look at those results and decide on a pathway. So that was three weeks in all. I went on holiday for four weeks as I was assured it would make no difference - hard to believe , isn't it? I had a meeting on my return. The various pathways were offered, and I was booked in for surgery the next week. It definitely isn't one size fits all.There are also tests to be arranged, and possibly theatres to be booked for the additional tests. I must say my GP was quick off the mark, more so than yours I believe. This is a waiting game, and if the medics get it wrong then the repercussions could be quite awful. Thankfully, I have never met anyone in that position! It is awful, you do want to move it on, I understand that, and I wish you well.  Let us know how you get on. X

Patriciamay
Member

Re: 4-6 Week Wait to Start Treatment

Hi sorry Sarah pressed sent too quickly.

 

i think the waits you have experienced are unusual, have to say my treatment in the NHS has been outstanding, and if I felt I was waiting too long, I would most definitely have started querying and pushing for dates etc.

 

NICE guidelines freely available on the net, you may want to have a look, most hospitals follow the guidelines.  I can't comment about private treatment, I would only say be sure about the quality if you do go private.  Xx

Patriciamay
Member

Re: 4-6 Week Wait to Start Treatment

Hi Sarah

 

Nice guidelines state 31 days from diagnosis to first line treatment, and then a further 31 days to second line treatment.  So for instance I had a lumpectomy and waited two weeks for that.   My next line of treat,net was radiotherapy which I actually waited 8 weeks for, but that was for clinical reasons.

 

i did question my oncologist about the wait between lesion removal and radiotherapy, and she wasn't concerned, and I felt assured.  I must admit I don't think I would be happy waiting 6-8 weeks for the removal part - assuming this is part of your treatment plan.  Although I do passionately believe that the NHS would not leave you waiting if they felt you were at risk.  I think I would be inclined to be clear about my treatment plan and push for cancellation if the plan is for surgery.  hope this helps. X

Jill1998
Community Champion

Re: 4-6 Week Wait to Start Treatment

Hi Sarah,there are national guidelines within which the treatment should start after diagnosis .Im not 100% sure but I think it's 31 days from decision to treat.Other ladies I have spoken to who have looked into private treatment have also found like yourself that it will only make a few days difference in terms of starting treatment .I can understand you being keen to start treatment particularly after having a delay due to GP not referring you earlier .Most people seem to wait about 4 weeks from diagnosis to surgery ,I was diagnosed on 28 th May 2 years ago and was offered an op on the 24th June although they then did bring it forward a few days.Surgeon told me the same as you that they expect a few weeks to make very little difference to your prognosis .However when you have got cancer growing inside you it is very hard to think that way and you just want it gone asap .It is definately worth looking at your options and weighing up the pros and cons of private treatment .4 weeks seems like an eternity I know don't know quite how I got through it .All the best Jill.
SarahBristol
Member

4-6 Week Wait to Start Treatment

I was diagnosed with bilateral Grade 2 breast cancer two days ago (although already feels like weeks have passed!). No signs in mammo and ultrasound of any invasion into the lymph nodes so they think still early stages, even though one of the tumours is rock hard and 2.5cm. I was feeling positive but they've told me it will be another 2 week wait to get my treatment plan and 4-6 weeks before I start treatment. Is this normal?

 

I tried to query the wait and was told it was normal and the consultant was very confident that my prognosis would not worsen in this time. However, they did also let slip that she's on holiday next week and they won't be have their normal round table meeting on Monday due to the bank holiday. I don't even have immunology results yet; my biopsies were now done 10 days ago. I've had a bad journey to diagnosis; first noticed the lumps in Nov, told by a GP in Jan that they were normal, so only went back on 2 May. I appreciate that the 'one size fits all' approach to treatment isn't effective and that I need more detail to inform clinical choices but I'm struggling to trust that I'm not being fobbed off due to resourcing issues. Six months between first seeing a GP and 2 months between the second GP visit and treatment feels unacceptable to me.

 

My brother has offered to pay the costs of private treatment but I would prefer to be treated at the local hospital if possible. I was also told by the lovely and reassuring NHS consultant that going private would only save 3-4 days. I am seeking a second opinion privately as a priority though anyway.

 

I'm only 34 so I want the best chance of minimising risks of recurrence even in 10 years time.

 

Any thoughts on whether I should be more pushy about timescales would be appreciated. I've already been let down once and it's hard to be relaxed when it feels like my life is hanging in the balance.

 

Sarah x