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. 

  • Hi Naomi!

    Thank you so much for that. Yes we know that place very well! and they are all great there. That is where James went last year to have his radiotherapy sessions along with his chemotherapy treatment (that was tablet form) and he tolerated the treatment well and it did manage to shrink his tumour in prep for surgery. I just hope it can work out the same this time round. Yes what his cancer surgeon (not oncologist) said when we saw her she said the cancer is `slow growing` and his prognosis is they're looking at years and not months, days or weeks into the future. So I take some comfort from that. But as you say once we see the oncolgist we will have a better idea and as I've said it's `deja-vu` from lthis time last year so hopefully what he tells us next Thursday will be a bit more promising. Thanks again.

    Vicky

  • Hi Everyone!

    I haven't been on this site for a long time instead keeping in contact with your colleagues at McMillan though with cancer fight we're all in it together. I visit they're community forum regularly and it's great to be able to connect with likeminded individuals who can relate to and get what you are going through and there will always be someone to pick you up when you are having a really bad day. 

    Anyway, the last time I was here was back in June when my husband had just received the news that he had a recurrance of his bowel cancer after just 5 months of having his operation to remove it all. Well, a lot has happened since then but unfortunately he's not out of the woods just yet but maybe made a slight clearing in the distance.

    We saw the oncologist at the start and he said that there were `a few cancer spots` in his bowel lining and when they did the CT scan which confirmed it, at the beginning it was hard to detect exactly where is was but eventually they located it. They said surgery was not an option and so got started on a combined chemotherapy programme of Capecitabine by tablet form and Oxaliplatin by infusion (CAPOX XELOX etc so many different names it's known by). He has just started his 4th cycle and this week he goes for a CT scan and this is going to send the ***** right up us because it was the CT scan that showed the cancer had come back and its the test that finds things you didn't think were there. He has had no adverse side effects with the treatment just the neuropathy (tingling in the fingers and toes) he gets this at the beginning of each cycle and it eases off slightly during the cycle. He feels a little bit tired the first few days after his infusion at day clinic and just doesn't feel like doing much of anything which is ok.

    His blood tests inbetween cycles which he gets on his `down week` the week he has not treatment or meds have come back normal and he has been told his liver and kidney function is normal also. His weight has also dropped from 143kg to 133kg but they're happy with that because he is a `big chunky bloke` and his blood sugar levels relating to his type 2 diabetes have reduced also these were not being measured since he came out of hospital after his tumour operation and his surgeon didn't take to kindly to that and I think she read the riot act with our GP which resulted in Jay being put on a 2nd diabetes tablet- Forxiga along with his Metformin. As these have worked and reduced his blood sugar levels the GP has decided to keep him on Forxiga for now as he was only supposed to be on it for a limited time.  

    Jay does have some scarring on one of his kidneys though and they thought that a stent may have needed to be fitted incase of any blockage but after a telephone consultation (these are still going on) with the urologist, he has decided that this is not necessary as Jay is passing urine ok and is taking in plenty of fluids he drinks a lot of water and loves ice drinks which unfortunately he needs to forfeit in the first days of his chemo cycles.

    So lots to feel positive about but still remaining `cautiously optimistic` I don't know if all these positives are a good sign though and its still in the back of my mind that something is going to bring it all crashing down again. But I think if there was anything to be majorly alarmed about the MDT team would tell us. I'm a little bit more calmer than what I was since I came on back in June when I was a mess but if we get good things back from this CT scan it will the cherry on top of the cake. We've been told this treatment may not eradicate Jay's cancer completly because I think there is a little bit of metastatis there but what they did say it will hopefully shrink it and slow it's growth right down. We live in hope. Take Care.

    Vicky 

  • Hello Vicky,

                       good to catch upon your latest post written with more positivity as you move cautiously forward with Jame's treatment. Its a long and uncertain road to travel back towards health but at least it sounds like you are heading in the right general direction,even if you are still not sure of the ultimate destination.

    Hope the neuropathy does not get any worse,round 5 and 6 of the same treatment really kicked in hard for me and left me with permanent effects,so a heads up to be aware of the cumalative effects and the ability to get a lowered dose to allow for this.Unfortunately l got caught receiving tratment on an offshore Scottish island,with my mainland consultant retired ill mid treatment with his locum replacement unwilling to change treatment not having seen me, which was understandable.

    l will look forward to reading updates which will continue to show improvements in both of your lives and wellbeing,

                              take care,

                                                 David

  • Thank you for your reply David.

    Yes I do feel slightly more positive now than I did a few months back. I won't say that they hope to cure it this time because I know that can never be guaranteed we never gave it a 2nd thought after the first time it would come back again- and so soon! If they can get it to a stage where it can give him a decent quality of life then that's enough for me. Mentally it is getting him he tells me this that it is constantly on his mind which is understandable. We have the CT scan coming up in 2 days and as I said this is going to be very scary for us both in what this throws up and I know this is praying on his mind too but as I say any progress is a bonus and we remain `cautiously optomistic`. We're a little bit in `limbo` at the moment because we don't know if there will be a 5th or 6th cycle. His CT is this Thursday (27th October) and when he got his meds away with him at his infusion last Friday they usually give him a blood form away with him to hand into the GP surgery when gets his bloods done there during his `down week` the week he gets no treatment at all but they were not going to give him this form this time and I asked about it and the wee nurse said because he was getting a CT I think he was going to get assessed from there if any further chemo sessions were required. She gave us the form in anycase and I have contacted the oncologist's secretary to find out if he still needs to go for that. The routine is that he goes to get bloods taken on his down week then the day after he gets that done we see the oncologist then the next day he gets his infusion. So really don't know what to make of that and lots of self doubts going on again. Will keep you updated. Take Care. 

     

    Vicky

  • My husband just finished 5th CAPOX cycle. It was the first tough one, just like you said, David! :cry:

    One more to go on 8.11.

    Next week we need to finalize the surgeon. APR with permanent stoma.

    Vicky what surgery did your husband have previously? You said it was all removed...

  • Hello Vicky and thanks for updating us,

    I think waiting for any scan to assess how treatment is going can be nerve wracking, so I can well imagine this is an unsettling time. Coping with uncertainty is challenging and it is hard not to overthink things, try and take it one step at a time.

    Give us a call if you ever want to talk, our number is Freephone 0808 800 4040 and we are around weekdays, 9-5.

    Best wishes,

    Julia

  • Hi Lucullan!

     

    Jay was initially diagnosed with his bowel cancer in July 2021 and shortly after that he got a bowel resection operation to get the stoma in place. He was in hospital for 3 weeks but that was only because the surgeon who was originally supposed to do the op went off with Covid and other than send Jay home with the likely event that another bed would not be there for him to come back to, they kept him in until a surgeon could be found. His stoma is permanent and they thought that they would be able to reverse it but unfortunately that's not happening but he's accepted it and has learned to live with it and can change it himself ok. Just means carrying a small bag around with him all the time when he goes out incase of a `blow out` which has happened from time to time when it `misbehaves`:laugh: He got the operation to remove the tumour in January this year I don't actually know what kind of operation that was but we were told that the tumour was localised in that it hadn't spread anywhere- in the 3 or 4 years it had been lying dormant just sitting there- and wasn't likely to go anywhere before the operation.The operation went well and as far as the surgeon and her team were concerned they had got it all. Unfortunately when he went for a follow up appointment in May this year with his surgeon she did some blood tests and a few weeks later we got a letter to say that his CEA markers had elevated and that they were sending him for the CT scan which had been scheduled for him later this year and this unfortunately showed that the cancer had returned more or less in the same place and 5 or 6 months since they were convinced they got rid of it. We were absolutely devestated and so was the surgeon as she had to break the news to us and now as they say the rest is history and here we are fighting again. Jay didnt get any further sessions of chemo or radiotherapy after his operation because they said everything was clear and they were not going to do anything that wasn't necessary. He has been going through cycles of Oxaliplatin and Capecitabine and just started his 4th cycle. All the tests they have done inbetween his cycles blood tests etc have come back normal and his liver and kidney functions are good too he's been told. He goes for a CT scan on Thursday and this is going to be very worrying for us as this is how we found out the cancer had come back and its when they find things you didn't think were there. Apparently very small micro cells can escape and get through and form again and they think apparently that is what happened to Jay although I have no doubt they did their best to get it all. So we are remaining `cautiously optimistic` that they'll get some kind of results with this treatment. It may be at the stage where it may not be curable, but manageable as we were told there is slight metastitis there (slight spread) so who knows. This not maybe the same for your husband though as everyone is different so please don't take what I am telling you as gospel and please don't get worried. I wish you well with your journey. Take Care. 

     

    Vicky

  • Thank you for your reply, Vicky! I know cancer journey is a very individual journey for each patient. They don't actually have answers to why someone's spread and someone's doesn't. There is a lot about cancer they don't know ‍♀️.

     

    All the best with further treatment. 

    We started with chemo radiation, completed that then moved on to CAPOX - then finishing it with surgery. Fingers crossed alll goes well. 

  • Hi Julia!

    Thank you. Yes it is a bit worrying and I know it is getting to Jay as it gets closer he will not come into bed right away at night preferring to sit up a while without the TV on or the lights off and I know its turning over and over in his head. He'll be like this for a couple of weeks yet because we hope to get results of the test on the 10th November when we meet with the oncologist again. For the fact that we are getting the feedback that his liver and kidney function is normal and that his blood tests are normal too gives us some encouragement but its just this what they will find with the CT. I know it might be hard to say, but as a nurse do you think that it sounds as though things are going in the right direction? Thanks.

     

    Vicky.

  • Good Luck and Best Wishes to the both of you Lucullan!

    Take Care

    Vicky xx