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Delays are frustrating and terrifying

8 REPLIES 8
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Re: Delays are frustrating and terrifying

Just to say that if you do choose to have some surgery/treatment privately and some on the NHS please try to ensure that the different consultants/departments/hospitals are talking to each other.  A friend of mine assumed his private consultant who he paid to carry out his op for bowel cancer would also liaise with the NHS hospital where he opted to have chemo.  This didn't happen and if he (the patient) hadn't chased it up I believe the chemo would never have happened.

 

Conversely, don't assume that subsequent treatment will happen more quickly because you have had your op privately (i.e. more quickly than you may have done under the NHS).  You may find yourself back on the NHS timescales (i.e. the 'clock' may be set to start running as per diagnosis date) so have gained nothing time-wise on the overall timetable by going private for your op.  Worth checking out the timescales with the relevant private and NHS providers.

 

I suppose what I'm trying to say is that, if you have private health insurance it may be beneficial to stick with the private system rather than switching between private and NHS.  I appreciate that some people pay out of their own pockets to have their op privately but the subsequent cost of chemo and/or radiotherapy would be prohibitive.  

 

Personally, I cannot fault the timescales with which I was dealt with by the NHS hospital where I was diagnosed but I realise this is not the case will all NHS trusts and all grades of cancer.  My mass was large, high grade and node involvement was clear from the start so my case was prioristised accordingly.  I can understand that if delays are causing anxiety and private treatment is an option then that's a sensible course of action for some people.

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Re: Delays are frustrating and terrifying

Hi I am new to this website.  I was diagnosed on 20th Aug had lumpetomy on 4th Sept then told on 17th Sept that now needed Mastectomy this being done tomorrow 25th. Very quick diagnosis and care. Hope all goes to plan for you.

Spoiler
 
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Re: Delays are frustrating and terrifying

I hope it all goes well, pinkie pie.

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Re: Delays are frustrating and terrifying

Best of luck pinkie pie , you are in my thoughts x
Member

Re: Delays are frustrating and terrifying

Good luck and fingers crossed for Wednesday, stay possitive.

Please keep us updated x

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Re: Delays are frustrating and terrifying

Thanks very much to you both for replying with your experiences on the delays in nhs test results and the options to go private.

I've been for another ultrasound today to look at an area that had shown up in my MRI. The radiologist said he could see another area of concern that he wanted to take biopsys from and he took 4 samples to go to the lab.
The consultant has left my surgery scheduled for Wednesday, if the results of today's biopsy are clear I will proceed with the original surgery, if the results are not good, I will only have the lymph nodes removed on Wednesday and will need to have a mastectomy and reconstruction at a later date.

They have agreed that if I need a mastectomy that this is likely to be quicker if dealt with privately.

I'm in some ways relieved that one way or another my lymph nodes will be removed on Wednesday for testing as my biggest fear at the moment is the prospect that this could have spread. Although I am pretty terrified that this may now have progressed to requiring a mastectomy not because of the change to my appearance but the thought of such extensive surgery and all the decisions that will come with it.

Wish me luck for Wednesday - hopefully a lumpectomy and lymph nodes removal - these are the best case scenario right now.
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Re: Delays are frustrating and terrifying

I live in London and I got my diagnosis on 15th August. I was given a date 2 weeks later for an MRI. I decided to use my private health insurance. I saw a consultant on 18th August and had my MRI done the next day. I got copy of my biopsy results and a disc of my mammograms from breast clinic to give to my private consultant. I had WLE and SNB on 28th August. I start my radiotherapy on 24th September. For me the waiting was unbearable and using the private health insurance helped me feel more control of events. I had a feeling my biopsy would indicate cancer so I had already researched a consultant I could see privately. I live in London, not sure if location makes a difference. 

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Re: Delays are frustrating and terrifying

Hi

I asked my consultant the first time I saw him if it would be worth going private for my MX and he said the same as yours you don't get seen any quicker.  I was back to see the consultant the following week and he told me he would not be able to operate for another month and because he then new I had private health care refered me on to someone who did private, this would have been on a Wednesday, I saw the private consultant on the Thursday and had a MX the following Tuesday.

I am going to have my chemo through the NHS because if I did that privatly they would do it in my own home and I don't want home to feel like a hospital, also I think the support on the chemo ward would be benefial to me.

Will go private for my reconstruction (which is way down the line) as the consultant has already agreed to do this for me. 

If you have private health care use it all my scans and biopsys were given straight to the private consultant. The worry and stress the whole process creates is bad enough and the sooner you get seen the sooner you get better x

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Delays are frustrating and terrifying

I'm terrified that delays in scans, appointments and surgery is giving my breast cancer a chance to spread.

It is now more than 3 months since I discovered a lump, I was given a non urgent referral for breast clinic as my GP thought it was probably nothing to worry about. After mammogram, ultrasound and biopsy I was told almost a month ago that I have Invasive Lobular Breast Cancer and would require the lump to be removed, the sentinel lymph node removed and thereafter treatment would be radiotherapy and "tablets" but could be more depending on the result of the histology from the surgery.

I had an MRI on 12th September and was due to have surgery 24th September but I was told last Thursday that they need a further ultrasound which can't be done until Monday and if radiologist thinks a biopsy is required, my surgery will be cancelled to wait for results of biopsy.

I have private health care and mentioned this at the first diagnosis appointment but was told that I would not be dealt with any quicker by going private and that MRI and surgery would be within a couple of weeks.

To top it all my surgeon has a holiday and if surgery is cancelled on Wednesday I've been told it will be well into oct before it can be done.

I know the surgeon needs to have all the facts before operating but I can't help but feel very anxious that this disease is taking its opportunity to spread. I just wish I had jumped ship to private right at the beginning as I have now read of people having surgery within two weeks of diagnosis. I now face the prospect of it being a 7 week gap between diagnosis and surgery.

I can't sleep for worrying about this delay and what this disease is doing. Nhs guidelines are that surgery should be within 31 days of diagnosis and I will be well outwith this if surgery doesn't go ahead on Wednesday.

Has anyone else had the same anxieties and do you know if it is possible to get my scans and biopsys from the nhs and give them to a private consultant. It seems so petty when I read of the other things girls are going through but I really don't want to give the cancer any more time to spread xx