disappointing start to treatment

Hi there ,

I’m so sorry today didn’t go to plan. Was today the original date for your surgery or were things delayed because of COVID-19?  I know the window for surgery for anal cancer is a very narrow one, I had surgery as first line treatment but my colorectal surgeon said it was only possible because I’d been caught very early, my tumour was approximately 2cm in diameter & 2mm deep, it wasn’t even detectable on either of my diagnostic scans, he said only around 1/600 are viable for a local resection. I hope that you get a date for your scans really soon & your team get a treatment plan in place for you. The waiting really is the worst! 

Nicola 

I am so sorry that you didn't get the outcome you hoped for today and send you all my best wishes!  Six years ago my tumour was so large (68 x 55 mm) that an operation wasn't considered an option!  Please don't feel downhearted!  Your best course might be like mine was, either because of the size or site of the tumour that chemoradiotherapy is the best first line of attack!  I know it is not easy to accept.  But I was told that my tumour was too large to operate on without first trying to shrink it/kill it off by radiotherapy.  Had to move treatment hospitals!!  Scary time but no real option.  Went along with the medical consensus.  It worked for me.  I know how difficult the uncertainty is but you have to live in hope and believe that the experts know what they are doing and have for a long time.  Please try to keep hoping for the outcome that you hope for   The experts know what they are doing.  Still here 6 plus years later.  Love and hope.  Mxx

Hi Nicola,

 Maybe it was because of Covid, it felt like I'd been forgotten and had to chase them up to get seen. The consultant still expected that it would be the same size today that it was at the end of April, nearly 2 months ago. I just hope it can be treated if it has spread....

Hi again , 

This pandemic has had a serious knock on effect on many health related services, cancer services included & I can only imagine the feelings you have surrounding this delay in your surgery/treatment!! I’ve heard from several people that have felt they’ve been abandoned throughout this crisis.

The most common of anal cancers is squamous cell carcinoma, are you aware as to whether this is your diagnosis? it’s generally a very slow growing cancer, although that’s no excuse for you being left without treatment for 2 months!… I think it’s a completely natural reaction in this situation to think the worst but hopefully your next lot of scans will bring more positive news & a treatment plan can be put in place & you can begin your journey back to good health. 

Nicola 

Hi I remember you from 6+ years ago. I had chemo/radiotherapy for 5 weeks and like you am thankfully still here to tell the tale. So to everyone starting or going through treatment there is light at the end of  the tunnel. Just be extra careful about mixing with people as the  treatment can affect your imune system. 

Hi Nicola,

Yes yesterday was the original date for my surgery. But my original diagnosis was late April. 

It was tagged with a number 20 for identification purposes during the endoscopy and the doctor doing the procedure said it was caught early so not to worry too much and that I must have it removed within 2 weeks. Well then Covid happened and I didn't hear anything for 6 weeks or so apart from a letter giving the diagnosis 5 days after the endoscopy. In the end in frustration I rang the consultants secretary because I'd not heard anything explaining what I had been told by the endoscopy team. She was quite abrupt (rude even) but eventually grudgingly sent the consultant a text message asking him to ring me which he did. He did put me at ease saying it responds well to treatment etc and he would operate on it and I'd get a letter with the date for the operation. So the op was yesterday and he couldn't do it because the tumour (in his words) seems to have progressed, he said it was now the size of a golf ball. I have CT and MRI scans booked but don't know what date these are yet. I'm guessing that if it was removed early when originally planned I possibly would not need any further treatment but now it has been left too long and its got a lot bigger it's difficult to sort out. What a mess!!!

 Very very scary

 I should say that I am in Cornwall and we only have one hospital so don't have a choice if needed.

 Kindest regards Steve

Hi , 

I understand the pressure that COVID has put on the NHS but this doesn’t excuse you having no updates for 6 weeks!! It also doesn’t excuse rudeness when you make queries into your own care!!… I too hoped that surgery would mean no further treatment for me but the clearance on a small area of my tumour was only 1mm (majority had 4mm clearance) & 1mm is cut off for further treatment therefore I was entered into a clinical trial & received 4 1/2 weeks of chemoradiotherapy. I remember feeling devastated & really scared at the thought of going through this treatment but I knew I didn’t have a choice & I’m here to tell the tale so to speak, it gave me my life back. It’s such a difficult time for you with the feelings of ‘what if’ & what will be a complete change of treatment plans but hopefully your scan dates will come through really soon & a plan will be put in place for you moving forward & you can begin getting back to good health. If you don’t hear anything within a few days with scan dates don’t be afraid to chase things up again! You can not afford to slip through the cracks again. 

I hope you have news very soon. 

Thinking of you. 

Nicola 

That is shocking, 6 weeks and no update.!  I encountered some delay too with my treatment and had to keep chasing with T/C's and this was pre-Covid. You will feel better once you have the date for your scans and then have a treatment plan in place but keep chasing them. You shouldn't have to but as in my case you've got to.  As I understand it,chemo and radiotherapy are the best option for this type of cancer and has a high success rate.  The usual regime is 5.5 weeks of chemo, 1 infusion at the beginning and then daily tablets Monday-Friday and radiotherapy 5 days a week for 5.5 weeks. Let us know how you get on x

For once I will try to keep it short!  My treatment suffered a set back when I panicked during my MRI, just after my CT scan both on Xmas eve 2013.  So it was my fault that my MRI only took place on 8 Jan 20014.  Treatment started  17 Feb 2014 and the rest is now a dim and distant past.  My delay in starting treatment was down to me.  If I had been stronger it could probably have started sooner, but the buck stops with me.  What I think I am trying to say is - don't try to analyse too much or allocate blame.  If your condition had been there for however short a time, once a treatment plan is in place that is the best way forward!  My delay was my fault so I only had myself to blame - my fault that I couldn't cope with the MRI, so all down to me but once treatment started it sped along ,- but again not without hiccups during treatment - delays with treatment due to problems with the machines.  But that is in the past.  This is now and I am so grateful, thankful and happy to be still here!!  74 now wasn't sure at 67 if I d still be here!!  Honestly?  I'm grateful but I feel old like anyone of my age.  Having said that I might never have found out!!  Love Mxx

Oh my goodness, I've just re-read the hospital discharge summary and have seen the preliminary diagnosis of Malignant neoplasm of rectum. I didn't notice this earlier, They originally said it was a squamous cell carcinoma. My fear levels have just rocketed.............

Steve x