Husband's Recurrance In Bowel Cancer

 

Hi Everyone!

 

I am new to this forum but not to the CR site as I make a regular donation. We just got the devestating news on Tuesday of this week that my husband's bowel cancer has recurred after his successful operation to remove the tumour and be cancer free back in January this year (just about 6 months ago). It was an absolute `hammer blow` when the surgeon told us on Tuesday and since then I have been an absolute mess! I am going back to the way I was before his initial diagnosis last July in that I can't now focus on anything other than this, I feel sick at the thought of eating because my stomach is constanly doing sommersaults but just force myself to eat.  Sleeping is not a problem but I've been waking up the last couple of mornings just feeling like I don't want to get out of bed and takes a little time for me to do that. I am on tablets for depression for a illness that causes this of my own and last year my GP increased my dosage because I explained to him over the phone what was going on and he said if I felt better I could reduce the dosage back to original one but unfortunately now I will have to keep it as it is but don't want to increas it further.  The tumour has come back in his stomach lining and some is showing in his pelvis. He met up with his surgeon back in May for his follow-up appointment after surgery and she did blood tests with him and then about 2 or 3 weeks after that we got a letter to say that his CEA markers had risen and the CT scan that had been scheduled for later this year was being brought forward. He went for the CT scan and we thought nothing more about it and then we got a phone call at home last Thursday to say they wanted to see him in person at the hospital. The alarm bells began to ring then because usually if they phone you its something bad and it was we got the news on Tuesday and the surgeon seemed so upset about the whole thing as it was herself who performed his operation. She said surgery is not an option this time because of where the tumour is there's `tubes` round about or something she said and I don't know if there will be complications in doing surgery. I was trying my best to take everything in but all was just a daze. What she did say was that the tumour is `slow growing` so he's looking at years here not days, weeks or months and looking at all the information it seems these types of tumours are `low grade cancer`? would I be right in saying this? She said he's not going anywhere anytime soon and it could be years well into the future before any adverse effects show. We now have to see his oncologist in 2 weeks time to get a management plan set up which is probably going to involve chemotherapy. When he went through his first treatment to shrink his tumour they did chemoradiation which consisted of courses of radiotherapy and chemotherapy in tablet form which he could take at home. He had no adverse effects when doing this. So hopefully he'll go down this route again if its viable. The surgeon said that the chemotherapy may shrink the tumour right down so there may be a chance surgery maybe an option again at a later stage. After his first surgery when we met with the oncologist I asked if he would need any further courses of chemo or radiotherapy and he said no. His words were along the lines of  `If no treatment is presently needed, they don't do or start anything at that time`. I just wonder now if he had extra courses of chemo or radiotherapy it may killed off any of these stray micro cells that can get missed and are hard to detect. I am a little angry at that but the oncologist is the person who knows best so you put your trust in them. Ironically its my husband who is trying to stay positive and look on the bright side of things but I know he's `scared` and all sorts will be running through his head when he's sitting on his own. He is also type 2 diabetic so he has this as well as his age (68) going against him. His surgeon was not very happy either when she found out that his blood sugar levels were not being monitored since he came out of hospital in January. The blood tests had also shown that these had shot up also and when he was in hospital his blood sugars were being tested every other day. So she was writing to our GP practice immediately to get this sorted out. My husband has lost some weight too but I think it's the stress of all this. It all started after he got the letter about his CEA markers he just stopped eating or ate very little but his surgeon told him because of his high blood sugar levels its possible this has caused his weight to drop too because we never knew that high blood sugar levels can cause weight loss too. His eating habits have increased again though but whether this is through shock or denial its hard to tell.  I just feel confused, angry and scared that I'm now going to lose him but hopefully not for a good while yet. Hope you can help with some advice. 

  • Hello VickyM21,

                                 sorry to read of your current situation,its always a shock when as you are winding down from the high stress of the original diagnosis and treatment, to hear you have to find the strength to go again.Having been through similar its not something that you can just bounce back from,it takes a lot of mental strength and effort.

       Reading your post l got the sense that the original cancer in the bowel was not a high grade,and did not involve transfer to nearby lymph nodes, and that the surgery went well with tumour removal allowing good clear margins,being the reason that no follow up chemo was deemed nessacery.

    Chemo is tremendously destructive to the body and much more debilitating than the original complaint.Like your husband l had pre surgery chemo/radio and found it manageable, tiring,but then l worked each day on a farm until  the the 3.30pm treatment time. My spread was to the liver and picked up on pre surgery scans, but l had been graded at high 3 with an inflamed lymph nearby,so the possibility for spread was that much higher.The post chemo over 18 weeks was completely different to the first,savagely destructive being the only word to describe it,and l have been left with severe neuropapathy, and it took a good two years for the utter exaustion to dissapate.This said l fully recognise how many others would have switched with me in a heartbeat to end with a successful outcome 7 years on.. So it comes as no surprise that post op chemo is not advocated unless absolutely needed,and l should point out l was extremely work fit with no underlying health issues.

    The irony here is that my cancer that was subsequently graded 4,with spread,and looked towards being terminal,attracted treatment,whereas it would seem your husbands was lower grade with a successful surgical intervention,with spread appearing to be a far less likely outcome,meant  he appears to be very unfortunate and in a small minority.

    Your post does offer an area of hope in that future treatments may carry the prospect of shrinking the tumours to such an extent that it will allow sufficient margins around nearby organs,major blood vessels,glands, ducts and "tubes" to allow subsequent successful surgery.Assuming that the initial tumour shrank in response it raises the prospects of this possibility,which l hope turns out to be the case.

    In the darkest of times,there is always a light to be seen if you look, although l found myself at times, wishing it was not quite so far away,

                                Take care,

                                                  David

  • I am sorry to hear about your husband cancer reoccurrence :(

    I know it might be irrelevant but have you changed his diet post surgery in any way? I am really interested to know as we are in a similar boat.

    My husband has CRC and we are doing chemo and radiation to shrink the tumor before surgery. We are wondering after the surgery what lifestyle and food readjustments are recommended. (Apart for the obvious no red meat - as we are predominantly vegetarians we have no issues with that.)

  • Hello there and thanks for posting

    I am so sorry to hear your husbands cancer has come back and this must have come as such a shock to you both and appreciate you have questions.

    It sounds like the doctors are as surprised and as disappointed as you are with this news. From what you have said it seems like the surgery went well and the histology report showed all the cancer had been removed. Sadly as you say some microscopic cancer cells must have got through and already started to travel in the blood or lymphatic system where they began to grow.

    Of course no one wanted to see your husband back here again so soon needing more treatment but try and hang in there for now and see what the oncologist has to say. As the surgeon has suggested chemotherapy is likely to be the choice of treatment for now and hopefully this will shrink down the tumours enough where more surgery may be possible. If not hopefully the tumours will respond well the the treatment and will control and halt the cancer in it's tracks for a long long time.

    As you say slow growing usually means 'low grade' and the specialist team involved in your husbands care will be wanting to throw everything they have at this to give your husband the best possible outcome possible.

    A patient's diabetes can be turned upside down by cancer treatment and Diabetes UK alongside Macmillan have produced an information pack about this here. I hope your husband sees someone about this soon so they can get on top of stabilising his blood sugars and monitoring him through this next course of treatment.

    Do also talk to your doctor about how this news is affecting you and the way you are feeling as they may be able to alter your medications or suggest other ways to support and help you through this time.

    We have a section about taking care of yourself when a loved one has cancer here that you might find useful to take a look at.

    Times like this are tough and I hope you also have other friends and family around you to lend an ear or a hand when they can.

    Please get back if you have more questions but do also talk through any questions or uncertainties you have with the team involved. Our helpline is also open Mon-fri 9-5 and you are welcome to call the nurses if you prefer on 0808 800 4040.

    Best wishes to you both

    Take care

    Naomi

  • Hi There!

     

    No haven't changed his diet. he just began eating as normal again after his operation- including red meat. But this may be worth looking at because seemingly this is a `no no`. We've fell by the wayside a bit with the `takeaways` again too so maybe these will be getting curtailed a little bit again. 

  • Ok. Yeah, I think definitely worth eating healthy and avoiding red meat or any processed meat - like salamis. 

    My husband immediately got strict instructions of no red meat or processed meat ever again. We are in India - they are more vegetarian in general but they are super serious about that being a big no no. Though I always believe moderation is the key with anything.

    I hope you are over the initial shock and are both ready to fight. I hope it gets above expectations and i am sure you can beat this!!! 

     

  • Thanks For your message Naomi!

     

    I have done nothing but contact discussion forums since finding out about James' s recent diagnosis. MacMillan have been great and a few I have spoke to on there have been very inspirtational as some have actually gone through the same issues as we are having now and are `still here` so there maybe something in that that it's `not the end` and how a few have said `I can do this` with him. I feel a bit more upbeat about it after reading those posts but then I forget and think I'm nnot supposed to feel upbeat just now. I just want to stop feeling like this. It's a feeling of `deja-vu` because it was exactly at this time last year I was exactly the same way but at that time we didn't even have the cancer diagnosis and found out on the 1st July about the diagnosis exactly one year ago this coming Friday. We had hoped to celebrate that wee milestone of when he found out and then beat it 6 months later or so we thought so that's not happening. Ironically after we found out last year about the cancer I felt as though a weight had been lifted because then we knew what we were dealing with and because I think the surgeon said it was `treatable` because the tumor  was localised and hadn't spread anywhere and that apparently it had been lying there dormant for 3 or 4 years without causing any symptoms. This time I'm not so calm though because she has said they can't operated just now whether it means can't operate ever I don't know because I was trying to take everything in she was telling me but it was all just a daze. I did hear her though telling my husband it is `slow growing` and we're looking at years into the future before anything adverse starts to show. I've been looking at info on bowel/colorectal cancer and it does say  it is one of the `slower growing and treatable cancers` is this right?? It has shown up in his stomach lining and in his pelvis I don't know what type of cancer that is now or if it is still known as bowel cancer, local recurrance cancer, or regional recurrance cancer as I've been reading about. I'm hoping the oncologist can go down the route of chemotherapy tablets again as he did not have any adverse side effects taking these the first time along with radiotherapy treatement (chemoradiation) and both treatments did shrink the tumour and surgery was able to go ahead as scheduled. But then I am thinking that this maybe a different kind of cancer and more invasive chemo may be needed. We see the oncologist on the 7th July- a week this coming Thursday and it just feels like waiting `forever`. What I am also scared about is if the cancer spreads further within that time. I asked the surgeon- not oncologist- this the last time. We did a phone consultation the last time because we were actually away on holiday and she was about to go on holiday and she said for the fact the tumour had not gone anywhere in 3 or 4 years it was very highly unlikely it was going to go anywhere anytime soon. Is it possible to spread while waiting to see specialists?? I'm so sorry to be a nuisance my head it just going round in circles. James- my husband ironically is the one holding it all together. To look at him you would think there was nothing wrong with him but I know in his head he will be sh****g himself. I just sit and wonder the cliche `Why me/us`.

  • Hello there and thanks for posting

    I am sorry to hear your husband is undergoing treatment for bowel cancer at the moment.

    I am one of the nurses and thought I would reply to you and point you to some information about diet and bowel cancer treatment here on our website. Usually if diet adjustments need to be made after surgery your husbands specialist team will go through this with him.

    Do get back if you have further questions.

    I do wish you and your husband all the very best

    Naomi

  • Thanks so much! 

     

    Everyone is telling me `we can do this/beat this` and I just hope it is true. Just going into the fear of the unknown but what is that saying `face the fear and do it anyway`. He's neither up nor down about the whole thing and I wish I could say the same about myself but I'm still in bits. I just wish it was July the 8th so we could find out what's happening feels as though it's taking forever to come.  It was about exactly this time last year I was this way just before we found out about the original cancer diagnosis (1st July) exactly one year ago this coming Friday. We hoped to mark that wee milestone with him finding out and then beating it 6 months later. Not going to happen though. I had hoped never to feel the way I did again back then but there you are one year on and we have `deja-vu`. At the time when we found out about the cancer it felt as though a weight had been lifted from us because we knew what we were looking at and because I think the surgeon-not oncologist- had said it was `treatable` and was localised and hadn't spread. This time though we're not so sure. I just hope something can be done to shrink the tumour(s) and possible operate again as the surgeon says at this point in time  it is inoperable.

  • Speaking to the GP for me is easier said than done. Our GP practice Glasgow- don't know if it goes for all practices up here- are still not conducting face to face appointments (still blaming Covid but you can see a consultant at hospital wearing a face mask).  We also used to have a nurses `drop in` clinic and this has been cancelled too and to see the nurse now for blood tests, diabetes etc has to made through appointment. Its not the same when you speak to the GP over the phone as you feel that your appointment is `rushed` and it just seems its as soon as they can get you off the phone and just give you more tablets.  

  • Hello there again and thanks for getting back to us

    I can understand you having many questions and most are best answered by your husbands specialist team. We have lots of information about the different types ( the type of cell where the cancer started), grades ( low or high grade, slow or fast growing) and stages ( localised or advanced and spread to other organs) of bowel cancer on our website here.

    When you can find out the exact type and stage of cancer he has it may be more helpful to you and easier to understand where your husband sits within these. Although every patient is different and the plan for treatment is as much about what previous treatment they have had and how fit and well they are in order to have treatment.

    Try and take each day as it comes and take the positive points the doctors have made about it being slow growing and that treatment is available.

    I see you are in Glasgow so  wondering if you have managed to make contact with the Macmillan information and support centre at the Beatson here where both patients and their loved ones can get support through the cancer journey.

    I wish you all the best and hope you both get what you need.  Hopefully once you know the plan moving forward you will feel more in control and things will start to calm down for you. 

    wish you all the best .

    Take care

    Naomi