Low Rectal Cancer Diagnosis - newbie on here

Hi Kev

Thats great.. I wondered how papillon saw what had happened in the chemo radiation.. were they ok doing the MRI early for you ? Presume that was just local MRI of pelvis .. ? 

yes, 3 months seems like an age to me .. they are saying 3 months at christies to see the full effect of the radiotherapy .. but I guess I will have to ask .. how far ahead did you have to book ahead with Prof M. do you know; sound like your oncologist was supportive. They seem very focused on surgery don't they but all tthe results I've seen on papillon seem so good.. I know there are risks but there seem to be risks either way ? Xxxx 

Hi Hannah ,

I am on holiday just now and not read all of this thread but I am so sorry to hear about your mum . You did mention she has other health issues that preclude her from surgery but have you asked for a full assessment directly from the anaesthetic department? Might be worthwhile having another consultation with them .

See seems caught in between a rock and a hard place . It is so difficult for you .

You are doing a great job supporting her .

Tske care,

Court 

Hi Annie,  

How is your chemo/radiation therapy going?   I was fortunate not to have any side effects from the chemo, but the radiation burned and started becoming painful half way through the treatment.   Less than a week after the treatment finished, I had a PET and MRI to see how much the tumur had shrunk; it had shrunk by 60%.   I went to see the surgeon shortly after and he said the tumor was still too low for him to get a margin and my only option was to have a colostomy.   

Prior to my surgery I looked into other options; TEM (micro surgery) and I also emailed Professor Mynit.    Professore Mynit advised me to have the liver mets removed then go to the UK to be assessed for Papillon therapy.  This advice conflicted with the advice of my medical team who advised removing the primary tumor before addressing the mets in the liver.   To be honest I could not see the sense in removing the mets in the liver while I had this monster in my rectum capable of spreading cancer to the liver and other organs.  My radio oncologist explained that TEM was not suitable as it is used for early stage cancers or those who are not fit enough to have the surgery to give them more time.   After assessing the alternatives, I reluctantly headed off for the surgery.  

In my experience, 8 weeks seems to be the magic number; surgery took place exactly 8 weeks after chemo/radiation finished; not sure when the next surgery will happen -  my MRI of the liver was supposed to happen today but was cancelled late yesterday afternoon and I haven't been given an alternative appointment.   

As I was off line for 2 weeks I have been out of the loop and do not know what your prognosis is.   Regarding myself, my surgery was done by key hole and I flew through the operation and, except for the stitches in my bottom have made a quick recovery.  The colostomy bag is taking a bit of getting used to; I went to see the stoma nurses on Monday and they were very pleased with my progress, it is a little over three weeks since my surgery and everything is still settling down.   Tomorrow I am going to see the Medical Oncologist, Monday I have an appointment with the Colo Rectal Surgeon and I have an appointment with the Liver surgeon on August 7; hopefully the MRI will be done before then!   

I hope you are managing well,  

Kind regards 

Rebecca.  

Hi Court

Thank you for your reply. We did initially have a lengthy consultation with the local anesthetist and it was from that we realised how high the risk for mum is. She is 79 has COPD, ME and she is partially sighted, currently only weighing 5 stone. She will not have a stoma as she wouldn’t be able to see well enough to deal with this on her own and most certainly would not want any help. Mum is a most unfortunate case due to to the location of the rectal tumour, just 1cm up and 4cm.  It has taken 6 months of referrals and second opinions. We are waiting for a final response to see if they will reconsider allowing mum to try Radiotherapy without a defunctioning stoma. No reply as yet but I think we are nearly at the end of the road with no return. At least I know we have tried everything to try and get treatment without surgery.  I think the only option is going to be palitive care but that has not been offered either as yet.

I hope you are having a lovely holiday.

best wishes

Hannah

Hi Kev

Good to hear from and your news. I hope it went well yesterday. Will keep you updated but running out of hope now. It will be 2 weeks on Monday that we wrote to the consultant asking for reconsideration so I will be chasing up again on Monday. It’s been a long stressful 6 months since  mums diagnosis but you don’t give up.

Wishing you all the best

Hannah

Hi Rebecca 

lovely to hear from you.. you sound like you are doing so well after the op. You make the stoma feel doable. ! Things seem to moving fast with the Liver surgery/treatment and that's really good ! 

I was T3 3cm rectal low ! with a suspected lymph node but they think it may be just inflamed they say. I just started the chemo radiation yesterday and as you said straightforward so far but I don't suppose side effects will have cut in yet ? I am hoping any symptoms of this thing will improve as it shrinks - if it shrinks !! 

Then they said we wait 3 months after the 5 weeks to let the radio do its full job and hope that it has either had a complete response (eradicated) or partial and reduced so then my options will be surgery or papillon depending on size etc.. apparently they are saying even if any lymph that the chemo rad could sort this ? But I am not sure how likely that is but they did seem positive. For the time being! It does seem scary that I will have to wait another 8-12 weeks after radio doing nothing but wait ? 

So.. not sure about papillon but I am going to enquire as to suitability .. and when it could start if appropriate. Most likely though they will push me towards gold standard of surgery so it's all a bit confusing. So good to hear the op route going well for you ..and a plan for liver ! 

Let me know what you think. I am always thinking about how you are getting on and thanks so much for giving me so much insight into your decisions re papillon etc - I can't tell you how helpful it is to hear how and why you opted for surgery .. I will try and stay strong during this chemo rad bit and hope it's not too bad ! first step in attacking this thing ! So that has to be good ? 

much love Annie xxxxx

Hannah ,

Hopefully they might consider a small palliative dose of radiotherapy if it’s clinically possible to keep her comfortable . Such a shame Papillion was not appropriate as it seems so right in the circumstances. 

She is a small lady . My dad is the same age and is very slight . I could swear he shrinks each week . It makes me sad but despite high calorie food he does not gain weight . 

You are a wonderful daughter , so caring with her . 

Take care,

Court 

Hi Annie,

It was the MRI that I had done a couple of weeks prior to my first Papillon treatment that showed what effect the Chemotherapy and Radiotherapy had achieved and at the first Papillon treatment the machine/scope confirmed the results at that point.

My plan regarding the timeframe was done by Professor Myint at one of my first referral meeting with him. My first meeting with him he had the images from my MRI that had been done locally. He wasn’t happy with the clarity of the images so he got me to come back over to Clatterbridge to have some fresh ones done there in a morning and saw him in the afternoon he said at that appointment that the Papillon was doable. The plan developed from there the Chemotherapy and Radiotherapy date wise didn’t start when we thought it might so my start of Papillon treatment got adjusted to suit.

Yes it was the pelvic area they did the MRI scans. I have had my 3rd dose today of Papillon treatment and I am to have a MRI scan done early September and mid September I am to go over and see Professor Myint just to have a camera up to see how things are going and if that’s okay. Then it’s a case of alternating between MRI scans then MRI and CT scans every 3 months for first 2 Years. I also have to have an endoscopy end of October.

so they are keeping a very close eye on me but he has said that I have had a very good response to the Papillon treatment.

So I am on a watch and see now. So fingers crossed that it doesn’t come back but for now at least that’s me finished treatment.

Kind Regards,

KevH

Hi Hannah,

you mustn’t give up and I hope you keep strong for your Mother. I do hope and pray that something can be done.

You are deep in my thoughts 

Kind Regards 

KevH

That’s what we are hoping for Court. Papillon was our greatest hope however, if a response could be gained from Radiotherapy who knows (it was a suggestion in correspondence from Clatterbridge) I have a call booked with mums GP on Monday so we can discuss chasing it up. It is so sad to see your precious parent in this dreadful situation, absolutely heartbreaking.

Mum is taking Cal Shake but as with your dear dad, it’s not making a great difference, but perhaps it’s helping to maintain weight. 

Thank goodness we care so much. I fear for those who don’t have this support; you really do have to be proactive in every way in this battle.

take care too and thank you for your kind response.

Hannah