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Delay in starting treatment after surgery

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Delay in starting treatment after surgery

Hi everyone 

Not sure if I am posting in the right section but as I am still going through surgery, this seemed the best option!

As most of us do, I am posting due to feeling very ‘down’ and having lost much of my positivity. I am growing increasingly concerned about the amount of time passing before I will start treatment- I am expecting to have chemo but no sign yet of an oncologist appointment  

It seemed an age from diagnosis to surgery but in reality with the normal wait for results etc and the need to have a CT scan it probably wasn’t unreasonable  As mentioned in a previous post, surgery was followed by a 3 week wait for results and the news that a re-excision was needed for a clear margin  Another 3 week wait for this surgery - to be done next weekend- and then another 2 weeks for results before I can be given an oncology appointment! 

I just worry at what any pesky stray cells could have been doing in all this time   I did have a clear CT but that is now 2 months ago and it is looking like at least another month before an appointment never mind treatment

I know that we all understand that waiting is the worst part of this whole nightmare but this is now becoming almost unbearable  I would say that I was relatively positive for almost two weeks following my op results but the positivity has now done a runner! 
Think I just wanted to vent really but I am finding it very hard feeling worse than I did following diagnosis  

8 REPLIES 8
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Thanks very much, Pat

The surgery was all over and done with very quickly - arrived at hospital at 7.40 and all done and dusted and released at 1pm after having lunch. Feeling perfectly ok other than still a bit tired. I have been out for walks and getting on with some work and other bits today. Now I just have to wait for the results to come back and hopefully an oncology appointment very soon after that.

You are so right to say that continual anxiety is exhausting - it completely takes over and the physical symptoms can be debilitating and concerning in addition to the emotional and mental strain. I am fully aware that my mood and emotions are going to fluctuate but I am certainly going to do what I can to remain on a more steady path without those huge drops to the depths. I am human and any further delays and certainly any bad news will definitely knock me down but I am aiming to keep the worries and the constant cancer thoughts in their own box and get on with other things as much as I possibly can. Keeping busy and keeping moving are the keys to this, so fingers crossed I can achieve this to some degree.

x

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Hello grannyp

I am really pleased to hear that you managed to have a reassuring and productive chat with your consultant and that you now find yourself on a more even keel. Long may that last; continual anxiety is exhausting. 

I will be thinking of you and your second surgery tomorrow, hoping that all goes smoothly and your recovery is trouble-free. Just look forward to that first cup of tea post surgery. For some reason even hospital tea tastes like Nectar of the Gods at such times! 

Good luck! I look forward to hearing of your future progress.

Pat x

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Hi again Pat

Your observations are spot on, again and the image of clinging on blindly sums up this whole situation perfectly!

I haven't managed to have a daily treat but have given myself some time just to relax and read a book - something that I love but in my past life I failed to do often enough! And I have ordered take away roast dinners for Sunday as a post-op treat. 

I am pleased to say that whilst I am not back to a totally positive attitude, I am certainly in a better place than I was and have managed to get on with some work, life admin and even a bit of online Xmas shopping. I also decided to call my consultant's secretary today and asked her to pass on my concerns about the potential consequences of the delays. As a result, my consultant called me and we had a fairly long chat which has helped to put my mind at ease somewhat. So far I have found him to be very honest and open and whilst there are no guarantees for any of us he has reassured me that any risks are extremely small and he has no concerns whatsoever about the timescales He also said that he will speak to the oncologist and ensure that an appointment is arranged as soon as the surgery results are available. I am hopeful that this may now enable me to get through the next couple weeks in a calmer frame of mind.

Thanks again and sending good wishes.

 

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Hello again grannyp

If I appear to be sensible and rational it is because I am in the fortunate position of now being able to look back and take stock. You are still in the eye of the storm and it is difficult to do anything other than close your eyes and cling blindly on. I assure you that I was not quite so patient and accepting when I was in the maelstrom. You now have just a few days until your next surgery. Be gentle and generous to yourself until then. Allow yourself treats and nice little interludes. Make sure there is something special to look forward to every day. Simple pleasures make the world go round and we of the Covid Cancer Cohort deserve them in abundance. You will soon have your treatment plan and a more definite way forward to anchor and steady you. You are very nearly there. 

Pat x

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Hi Pat

Thanks so much for your reply and your good wishes. I do recall you saying previously that you had long delays in obtaining both a diagnosis and results and the waits that you had do sound horrendous. And how I agree with you about the frustration and fear of sitting reading about all those who are diagnosed and treated in the shortest possible timescales whilst living through yet another delay. Like you I seem to have had a series of delays and am very concerned about the cumulative effect of these. At each stage we are told that the delay is no problem but I very much get the impression that each delay is viewed in isolation rather than as a whole from diagnosis onwards. I did have the benefit of a CT scan - which I know you didn’t due to your node involvement being found later - and that happened very quickly but is now 2 months ago. I also got my surgery date brought forward 3 weeks by transferring to my surgeon’s private list - but as the NHS date was more than 2 months after my mammogram recall it was still hardly a quick turnaround and was much longer than many posters on here have experienced. The private route hasn’t been any quicker for the next op as the hospital can only take private patients at weekend and evenings as the theatres are used by the NHS during weekdays due to COVID. I have no problem with this - my wait would have been the same for an NHS slot. 
I am aware that I have been focusing on the negatives over the last few days - what the stray cells may have been doing and are likely to do over the next few weeks, the fear of an early recurrence, the overwhelming fear of chemo and worrying about the COVID isolation can be managed and huge sadness for the loss of the life that I had. 
I am sure that I will recover some positivity. One of my overriding mantras has always been that you can find something positive in any situation and I need to re-discover that attitude. 
And I think that your attitude to the delays and problems you have suffered is remarkable- it is a very sensible attitude but an awful lot of people would not be able to think so rationally about it all. 
Thanks again😊

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Hi Jan

Thank you for taking the time to write such a detailed reply. I have been trying to focus very hard on the positives, especially the surgeon’s assurance that he is 100% certain that he has removed all the cancer and that the  second op is almost being over cautious. I was doing pretty well and was doing what I had hoped - using this gap to concentrate on other things - but I suddenly came crashing down and am finding it difficult to get back up. I suspect that the enormity of what I am dealing with has finally hit me hard and I just need to come to terms with it as I had to with the initial diagnosis. 
Thanks for the info on the guidelines for treatment to start. I had seen/heard different things but couldn’t find a definitive guideline. Even from my first op  there shouldn’t be a problem meeting 90 days - that would be early January, so I may avoid Christmas Eve!!

With the results from my first op, I understand that they just missed arriving for the MDT meeting, so of course had to wait another week. The consultant did say that the lab was short staffed due to people isolating - and half term! In effect my appointment was only delayed by 4 days but it still felt a long time. 
Thank you for your good wishes. I am sure I will be able to pick myself up and learn to make the most of this rollercoaster and what will become my new life. Possibly the feelings I currently have are not just fear of what is coming and what may or may not happen but also the start of a grieving process for the life that I had before breast cancer arrived to take it away. 
Thanks again

Grannyp

 

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Hi grannyp 

I am saddened to hear of your continued anxiety, having been cheered to see you rally and steel your resolve and positivity following your earliest posts.

I SO understand where you are coming from with your frustration at this awful waiting. I have been there. My delays started right from the word go with an excruciatingly tardy referral and diagnosis process. I was reading fulsome reports on this forum of timely pathways and faultlessly slick procedures whilst sitting at home waiting, quietly despairing and chewing my own arm off to the elbow. 

I waited almost ten weeks from referral to surgery. And, as you know, that is ten long weeks without treatment visualising the worst scenario. Like you, I then waited almost three weeks for results, where I learned that the SLNB had been positive. The pre-op ultrasound had sugggested otherwise. There followed another two months before further surgery for a full axillary lymph node clearance. Then COVID stepped in to further complicate the process. I had my one and only meeting with an oncologist on the day that Lockdown was announced, a surreal ‘Mary Celeste’ encounter when pandemic-modified treatment options were lobbed at me from a suitable distance. 

I have found checking the Nice guidelines to be a depressing and dispiriting process. I know that I have slipped through the net on several occasions but I can do nothing about it now. I am now on the other side of all that so I choose to let it go and move on from here. I have accepted that the system is not always perfect, that some receive more timely treatment than others (it shouldn’t be so, but it is), that cancer services are struggling in a pandemic dominated arena, that guidelines are just that - not hard and fast cut-off points that signal definite triumph or disaster, and that everyone is doing their best in an impossibly difficult situation. 


I’m probably not sounding very positive. But positivity is what I want to give you. I want to give you a galvanising hug of solidarity and promise that you will soon be looking back on this unbearable period of anxiety with a sense of acceptance and equilibrium, knowing that your team have been thorough, are doing their absolute best for you, and that your future treatment is reassuringly mapped out. Your positivity hasn’t done a runner. It is just lying low for a while. 

Do take heart from what Jaybro says. She always makes sense. 

Pat x

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Hi grannyp

You’re right. The waiting seems interminable and no amount of reassurance will stop our fear of those rogue cells we know can’t be detected by scans and how busy or inactive they are being.

NICE guidelines specify that, to be fully effective, chemotherapy should commence within 90 days of having surgery. For me, the delay was so long that I had to have my first chemo on Christmas Eve to ensure it started on time. Do your calculations and, if you are worried about should it be dated from the first or second surgery, contact your breast-care nurse and express your concerns. It is essential the multidisciplinary team has all the correct data for your specific cancer so they can calculate dosages once they’ve agreed on the best type of chemo for you so they may be waiting on more results,

Trust your team. They need the information from your second surgery to get things right for you. That was a long delay in getting your first set of surgery results but maybe the labs are slower because of the pandemic? Talking to someone on the team will help you understand the reason for any delay. At this rate, you may well find yourself as another Christmas Eve-r. Don’t make the mistake I did and cancel Christmas. There’s a very effective steroid boost that lasts 4-5 days before any crash may (or may not occur).

I hope all goes well for the second op and you’re soon on the treatment carousel. I had 19 of the 21 lymph nodes removed fond to be affected and, 2 years on, no sign of further spread so I’d say focus on how wonderful lymph nodes are at doing their job and catching those pesky escaping cells rather than worrying about the cells themselves. With lymph glands and chemo, they don’t stand much chance.

All the best, Jan x