Watch and wait ?

Hi . In all honesty I’ve only heard of watch and wait when people have had a complete clinical response ie. no sign of the tumour on the scans? Perhaps you could give your colorectal support nurse a ring and explain your concerns to her? Remember the nurses are always available on here for a chat too

Take care

Karen x

Hi Davisio, 

I had chemoradiotherapy in Feb/March and had a great response except for some residual matter left behind ((I’ve been told this is cells).  Because if this I’m now having chemotherapy in the hope it will melt it away. I wouldn’t be happy just leaving the tumour still there, even if it has shrunk. I would contact your specialist  nurse. 

Good luck, Sharon x

Thankyou Karen and Etta J for your replies....I've been looking up about watch and wait...and it does seem like the tumour has to be completely gone for this....the nurse told me that the radiotherapy continues to work for several weeks after fininshing....but I read that it works for 2 or 3 weeks afterwards? My course finished 8 weeks ago, and has shrunk to just over half...could it still shrink more? I find it difficult to talk to my oncology nurses...they are both very abrupt....I have to be very careful what I say and ask...like....when I was told about the watch and wait...I asked about the NHS backlog situation ....and if there are any problems with Poole Hospital....and got this very loud reply..." I am very offended that you should insinuate such a thing..." I was shocked...as I wasn't criticising or anything...it's just that what with watching the news....I was just wondering about the situation with hospitals in general....I immediately apologised and became very humble and kept thanking her for all the help...which I've always done...I'm always grateful for everything....I'm scared to ask any more questions ....as I always get the same answer..." Your getting the best treatment...it's gold standard "  and so I feel guilty again....and I come away from every call from the nurse feeling very down and depressed. I know they work hard...and it must be such a difficult job for them...but I just wish they could just answer my questions and just be a bit kinder.....for instance...the other day I went to Grab a Jab in Salisbury for my second vaccination (was too ill to have it before) and the nurse who did it was so lovely...I told her my worries ...and asked similar questions as I put to specialist nurse....and she was so patient and kind and put my mind at rest with a lot of things...I felt I could talk to her about anything..and she was quite happy to answer without getting cross...it made such a difference to be able to have that bit of...not so much sympathy ....but understanding??? Sorry to rant on like this...but I feel better for writing things down...and having this community is a lifeline....I don't have anyone else to talk to....my GP is never available....and when I did see him about a sore on my arm that is also worrying me....he seemed distracted and a bit fed up ...and kept his distance....so I feel I mustn't bother him....I feel such a burden..and I've tried so hard most of my life not to be a burden to anyone....always eating healthy and regularly exercising .........I think I will try and talk to a McMillan nurse....

does anyone know what the difference is between a Pathological Complete Response and a Clinical Complete Response? I don't think I've got either ? 

Hello Davisio… I am sorry to hear you are struggling to get the answers you need and the way you feel you are being treated sounds like it’s very distressing for you. If I felt I couldn’t speak to my nurses I would be asking to speak to someone else or taking someone along with with me for support so if you don’t understand anything or don’t take it all in, they will. Also the nurses may not be so abrupt if there is someone else there with you and they can ask things you feel uncomfortable about asking. I have lots of support, I’m lucky,  but if I didn’t I have MacMillan, Maggies Centre, etc on site at hospital and in the community  where I can go speak to qualified nurses who would be able to help support me. You  should not be apologising! Big hug.x

Thankyou Catz 321.   Just talking on here and getting lovely replies really does make up for not being able to talk to my team....I've got appointments just come through for an MRI scan and sigmoidoscopy on 4th and 5th October....so I am hoping I will be able to get information from the consultant doing the sigmoidoscopy and will be able to ask him questions...Thankyou again so much for taking the time to read and reply..and big hugs to you too x

Hi Davisio, 

I was so sad to read your reply. You are not a burden and should never think of yourself as being one. I would have suggested going to your GP, but they don’t appear to be very supportive either. 

I would highly recommend contacting the nurses at Macmillan. I have phoned a few times and they are wonderful, really supportive and will take time to explain things to you. 

I was pleased to see you do have scans, etc arranged for next month. I hope these go well for you and that you are able to get answers to your questions. 

I really hope everything goes well for you xx

Thankyou Etta J for your kind words....it's very reassuring getting replies....although I'm beginning to think I am moaning a bit.....it's such a frustrating time , isn't it.....when I was first diagnosed...the surgeon said he would ...in his words " I'll have that out within a few weeks...before the end of the month...that being March....which was a bit of a relief to think I would be rid of it quickly.....but then came the news that I would have to go on months of treeatment first...as they thought it wouldn't be a clear enough margin to remove the tumour...and that it was in an awkward place...they said mid rectal....3cm that was the only information I've ever been given...when I asked for more information...I was told " you don't need to know as it will be too much for you to take in" which in hindsight I thought was a bit insulting to my intelligence....my husband, who was with me at the time...thought so too....I would much rather know what's going on....it would stop my mind going round and round night after night wondering about what's happening.... I shall ring the nurses at McMillan ....and hopefully they will know a bit more about this watch and wait...Thankyou again for your advice ....hope you are going on alright...are you all treated and clear now? Hope so....I read about your journey...and wondering where you are at now? xx

You are very welcome and you are not moaning, this is a very stressful time and it’s so important you are kept fully updated. If you are anything like me, you can work with what you know but you can’t work with what you don’t know. 
I am very much the same as you in that my tumour was very low, that’s why they recommended chemo-radiotherapy to eradicate it. Although I had an excellent response, residue matter has been left behind. I understand this to be cancerous cells do they have to go, My CT scan also found a spot on my liver which was devastating as I was early stage before treatment and the horrid thing had almost gone after treatment so how a cell reached my liver I just don’t know.  Thankfully there is only one and it’s very small. Because of this I am having chemotherapy to mop up the cells and hopefully shrink met on my liver. My oncologist has mentioned an ablation if chemo doesn’t get rid of it all. I’m starting cycle 4 on Monday. They have told me I’ll be having 4-5 cycles so I’m nearing the end now. 
I’m afraid I wouldn’t recommend watch and wait to anyone after what has happened to me and I certainly wouldn’t recommend it to someone whose tumour is still there. 
I’m sure you will find the Macmillan nurses very helpful, they are lovely and explain everything very clearly.  I haven’t updated my journey so far so I need to do that soon. 
I really hope you get some answers soon as that will ease your anxiety. 
Taje care, Sharon xx

Thankyou  Sharon for your reply.....Im so sorry to hear you have a spot on your liver..this is what I worry about...as that seems to be a common occurrence ...whether on watch and wait or after an op ...I've been trying to look up about it...but it's hard to understand all the medical jargon and abbreviations........but from what I read on here....there always seems to be good outcomes with people going on for many years....so I'm sure you will be fine...but it's awful when you have already been through so muCh treatment ...to have to go through it all again...I hope you are coping...and good that you are near the end....I shall be ringing the McMillan nurses...and also I hope to be able to chat to the surgeon when I have the sigmoidoscopy ...you take care too.... Irene xx

You are most welcome Irene. Sadly, you are right, mets in liver do appear to be common with rectal/bowel cancer. I’m still in shock about mine. Can’t believe it’s happened. 
It does appear that you can have either watch & wait or operation and still get mets elsewhere but I think I would recommend an op as I think it provides more chance of this horrible disease travelling somewhere else. 
it’s good that you are having a sigmoidoscopy, this will tell you exactly what is left as well as giving you the opportunity to talk to the surgeon. I really hope that answer all your questions. 
im having cycle 4 chemo today, booked in for cycle 5 but won’t know what’s happening until I speak with my oncologist next Friday. 
Taje care, Sharon xx