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  

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

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

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