My husband has been diagnosed with bowel cancer (rectum)

Cancer
1

Hi All

On the 6th December my husband had a colostomy and other tests that revealed a mass in the rectum which they then said is a cancerous tumor ,our world just came to a halt really .Since the 6th we had to wait for biopsy resutls which we got the following week which did confirm the diagnosis ,we then had call from specialist nurse that told us we have 3 specialist nurse on our care plan (that alone seems concening why 3 ) who went through everything with us on the phone but in a tone that was sympathetic and not very positive .we have a MRI ( which hubby has had done Tuesday just gone they couldnt go forward at the MDT meeting which they have every Wednesday without the CT scan which at present cant have until Friday 30th the wait is agonising it serms it's a very long time from the 6th December to now and its looking like the MDT meeting on the 4th January is when will here from as of how this awful disease has got him .he fears the worst as i know you do . Do you guys think this is a long time to wait ? And we would love to hear your stories of all this what we are going through. He probably will be having chemotherapy then a operation and then chemo again possible a colostomy bag which they did hope could be reversed this is what was said at first meeting on the 6th December .thanks for taking the time to read our journey so far .

2

Oh Donna-what awful news-try not to think the worst-if your husband does have to have a colostomy bag-it may be temporary(hope so).

Is there a history of cancer in his family ?

I feel for you really I do-cancer in my fathers side-all had it -me too-had my surgery 2015-(bowel cancer) luckily no after treatment.

Can your doctor make it an urgent case-for CT to be done sooner ?

(I know Xmas is in the way of things.)

How about asking advice from Beating Bowel Cancer Nurses-google them - they have very caring nurses on the phone-can perhaps advise what's best for your husband-

Good Luck.

3

Hello Donna, your right it is a long time to wait but it's probably due to the Christmas period, in my experience scan results are known very quickly and red flagged if there is a problem. 

The waiting for results is the worse part because you don't know what you face but what they are doing is standard procedure, they have to build a full picture of the bowel and the stage of cancer, it's normal even if everything feels totally abnormal .

in my own experience you do have to make the running and be a pest sometimes, maybe not everyone will be in tomorrow but I suggest either ringing your specialists secretary and request a return call or go to the hospital and get hold of one of your nurses.

dont ask for assurances because you won't get them at this stage, but the biopsy result should tell them type of cancer and what stage its at ( if you won't to know this without a treatment plan)

From my own experience with bowel cancer ( 3 years ago), there are 2 things you have to do.

1 STAY POSITIVE, believe!!!

2. Be a nuisance, the care will be fantastic but they are busy and under resourced, don't be afraid to ring up, e mail, visit etc etc, it's affecting you 2, not them!

one last point, depending on the size of the tumour, ask about papillon treatment and do some research, this is what I had and it saved my bowel.

hope this helps, don't be afraid to ask 

4

Morning Grinch 99

Thankyou so much for your reply . Weve had biopsy and a MRI they said they really need them two and a CT to see the whole picture to say what stage we are unfortunately ,can they tell by just a biopsy ? .

We are trying our very best to stay positive i did ask if doing the scans privately would hurry things along but was told it wouldn't as it would be with a different hospital and could slow them getting the results .

But again thankyou for your advice and i will google papillon treatment as ive never heard of this ;is that private treatment ?

Kind regards Donna x

5

Morning Susan

We have been to our family doctor who is very good and very supportive but became of xmas doesn't seem to think it could be sooner .

My old school friend happens to be one of our specialist nurses and said Wednesday that she will do her best to get the CT sooner than Friday 30th .

Unfortunately cancer does run in hubby's family his dad passed with stomach cancer and his mum has just a few months ago finished treatment for cancerous polyps and has a colostomy bag now .he does fear the worse and its very hard for me to see him like this as he is always up beat and nothing bothers him .

Thankyou susan again for your advice

Donna

6

Hi donna

so sorry to hear about your husbands diagnosis 

I'm Joe just turned 45 and two years ago on 3 December 2014 I had a colonoscopy and they found 3 inch mass in my rectum 

I had had a colonoscopy in Feb 2011 which was clear as my brother had a colonoscopy and found to have 3 polyps 2 of which were cancerous unfortunately my brother passed away may 13

After the discovery it just snowballed I had ct scan on 13 and MRI on 21 then met with the surgeon on the 27 he preformed his own examination and wasn't happy with what he felt and organised his own colonoscopy for 29 December unfortunately the news wasn't good the tumour was too low down and there wouldn't be enough left to reattach colon so my surgeon decided to preform the colostomy surgery first on January 8 I had colostomy          surgery then time to heal six weeks later I started radiotherapy I had 30 sessions over six weeks with xloda tablets oral chemo 

then I was given time to heal the skin around my tailbone had been cracked and uncomfortable from treatment then I had another ct scan which revealed tumour had shrunk 

on 30 April 15 I had lower anterior resection (Lar) then given time to heal and June I started chemo I was given 12 sessions 1 every 2 weeks oxaliplatin and then 5fu in what looks like a baby bottle slow released over two days that finished in January 

I had my six moth check that came back clear I won't lie at times it's been hard during the second chemo you do get very tired day or two after and I had a few spasms which hurt there have been a few tears a few accidents with my colostomy but you do get used to it 

also in the last two years I've been checked and diagnosed with

lynch syndrome a defective chromosome my sister and mother have it also my mother wore the genes she had a kidney removed this year We had 50% chance of getting lynch syndrome 

 

7

Hi Donna I'm sorry for your husband's diagnosis.There are three nurses because they provide 24/7 cover and therefore difficult for one person, someone might want to go on annual leave or be unwell.

​This is a scary time. It is a long time to wait for answers but not a long time in the development of the cancer (which has been there for years) so it is unlikely anything new or dangerous will happen in this wait.

​The MDT is an essential event for people with cancer. There there are consultants surgeons, anaesthetists, radiographers, radiologists, specialist nurses and dieticians. Everyone is updated together and get their heads together for discussion. The stage of cancer and the background health of the patient, the precise position of the tumour, the genetics of the tumour cells, will determine the course with the highest survival chances with the best quality of life. It is not sensible to start people on life threatening drugs (chemotherapy) wily-nily if it is best to operate first or vice versa. There are a range of drugs available which are tailored to the individal person and this needs discussion. Additionally there may be factors such as stopping smoking, weight loss, or other health issues that require managing before it it is safe to proceed with what is a significant operation. The surgeons that attend that meeting will be the ones to operate. They will not have their consultant colleagues in the room with them when they are operating, so it is invaluable to receive some thoughts and ideas from their peers in the format of the MDT. It is basically an adanced plan involving dozens of health professionals directly involved in assessing your husbands exact needs and the best road ahead so it is worth an extra week's wait; additionally the biopsy results will take some time. Furthermore the surgery will be scheduled immediately once the MDT decision is made - even within days, so it will not be delayed and delayed.

As for the colonostomy, these are designed to be temporary but it will depend on exactly where the tumour is and what it attached to within the abdomen.

​It is a daunting prospect but hundreds of people have this done a day, with thousands around the country, and the first thought is to nail the cancer, focus on the chemo and the family, and these other things can be solved in time. I hope it all goes well for you.

8

Hi Donna

not sure where you are in the world but in the UK it is available on the NHS but only at a few hospitals at the moment, it's not the recommended treatment course as yet because they need a set of results over a longer period of time before changing course on the treatment of bowel cancer, however the results to date are extremely good.

see what the consultant says first then ask for options.

good luck and thinking of you both

9

Sorry to hear about your husband, I have just had similar news on the week before christmas, I was asked to go in on wednesday between christmas for blood test and CT scan, the CT scan was not done that day so I managed to plead with a lady in the CT department for any appointment she had available that week and got one for very early 7.30am on the friday morning, it was the only one available as no one wanted that time. I have not heard about the biopsies which were taken the week before christmas yet or had any results from the CT scan yet, but have been asked to go next wednesday for an appointment to see a Dr, but they would not tell me anything on the phone. Not sure if this is normal or not, can I ask for them to tell me any results before the appointment? Does anyone know. Hope this helps you Donna, I have not had a MRI Scan either.

 

10

Forgot to say they have told me it is definitely a tumour and they need to know how big, where is is exactly and whether it has spread or not.