Chemo or no Chemo

Hi

This won't be a very long reply as my stoma reversal has not been quite as straight forward as your husbands and I'm back in hospital!

However if you click on my name you will see from my profile that I was in a very similar situation to your husband.

Unfortunately everybody reacts differently to chemo however I continued to work 5 hours a day in an office throughout. The picc line is so much easier than an iv straight into the vein and the nurses have lots  of options to cover any side effects.

The 3 infected lymph nodes that have been removed may have been the only ones however are you prepared to take that risk? I was given the choice but felt that if the cancer was to return would I always wonder what if? By having the chemo I at least know that I have done everything that I could.

At the end of the day he could give it a try and if really suffering then decide to discontinue

Hope you come to a decision that you're both happy with

Take care

Karen x

Hello Flo and welcome

I was T3 N1 rectal cancer with 3 lymph nodes affected and post op I had a PICC line and the same chemo which you are being offered for 4 cycles. I think that this is the standard chemo and therefore not unusually aggressive. I was told that it would improve my 5 year survival percentage by about 5% so mine went up from 65 to 70% approx. Mine is T3 though I don't know what the numbers are for T2.

I had major side effects for around 3-4 days after the Oxaliplatin infusion (which would have made working impossible) and then it would settle down with the Capectabine tablets to profound tiredness and cold sensitivity with a bit of hand foot syndrome. If I had needed to work I could have done if it was a desk job with the tablets, having time off after infusions but everyone is different. My family and I took the view that having the chemo was the best option for me, as it gave me and them, peace  of mind that I had done everything I could to prevent it coming back, I might be the one in the 5% bracket. I always considered the opinion of the oncologist more important than the surgeon as this is their speciality and your surgery stage is over. Ask the oncologist or the specialist nurse what chance of survival you have with and without it and decide from there. Four months illness passes quickly and then you have the rest of your lives to enjoy together.

Good luck making your decision.

Hi Flo

Welcome to the forum.  I can fully understand you dilemma.

I had colon cancer and was initial told by the surgeon that it was probably all contained in my colon.  When the results came back there was chemo found in 3 out of 22 lymph nodes.  I was Stage 3.  I was offered the same chemo as your husband, but the Oxi by iv.  There was a trial at that time looking at three months -v- six months chemo.  I thought  about it, but as I had cancer in my lymph nodes I decided to go for the six months treatment.  I had to stop the Oxi after three treatments, I was offered a picc line but as I knew nothing about a picc line I search the Internet and frightened myself so stopped the Oxi.  I now know lots of people who've had picc lines and if I need chemo again I will have one.  

This chemo is a little aggressive, but it does a good job and a lot of patients have no side affects and manage to carry on working whilst on chemo.  Others are not so lucky and do have difficult side effects.  I had some, but the worst was the increasing tiredness.  I had my surgery in 2010 and chemo in 2011. 

If your husband decides to go for the chemo  and he finds it difficult, his team will reassess him and reduce the strength or he will have the option to stop altogether if he feels he cannot cope.

Talk things through with the oncologist at his next appointment before you make your final decision.

Take care,

VickiLynne

Hi Karen you have certainly been through the mill and I wish you well. My husband didn't have chemo before his op which there were problems after his bowel froze and he had to have a nasal gastric tube until the stoma decided to work once out of hospital it's been fairly plain sailing the reversal went really well and he is feeling well we don't know whether to rock the boat or not he had all 27 nodes removed with only 3 affected. I have been trying to ring everyone at the hospital and can't get hold of anyone to ask advice. I hope you have a smooth reversal take care Flo x

Hi thank you for your advice we didn't get any percentages on our visit or asked if we wanted it or not my husband hasn't worked since his op in January as he works most of the time miles from a toilet so it's not a choice at the moment and he has only 1 more full wages before he goes onto SSP so financially things will be hard after that but we will get through it have to be positive. Good luck and keep well x

Thank you VickiLynne still very undecided what to do we keep going round in circles with no answers oncologist again next Thursday if she is there as she is due to go on maternity leave and seem to have mummy brain we couldn't get a question in without it stopping her flow lol Keep well Flo x

I don't know if it would be helpful for you, as some people do not want to know that level of information but there are some calculators that can be found online that give you an indication of your disease free survival with or without chemo. As I said, they are not for everyone but if you know all of the details from the pathology they might be useful to help you make a decision. Ive found them helpful!

Hi Flo 

Cancer is a real financial drain, if you phone the Macmillan Helpline on 0808 808 0000 Mon to Fri 9:00am to 8:00pm you will be able to talk to someone who will tell you about any benefits you may be entitled to.  Most Support Centres also have advisors, their own or from the CAB, who are also able to help with advice and form filling.

Take care,

VickiLynne 

Hello Flo63, I am T3, N1. I was told by my oncologist that chemo would give me an additional 20% chance of it not returning. I’ve been on oxaliplatin via PICC line and 5FU instead of capecitabine (my oncologist said that the 5FU 48 hour pump tends to lead to fewer side effects than the capecitabine tablets). 

I’ve been pretty much ok. Day 5 of the cycle is a wipe out, but other than that, I have been able to walk, work etc. Interestingly, the steroids I was given to stop me being sick, caused much more difficulty than the chemo, making me feel all jangly with horrible weird dreams. I have never felt at all sick, so have cut the steroids by 50% since the first round. Also, if the side effects are horrible, they can adjust the dose (my platelets have dropped like a stone, so my dose is reduced).

Good luck!

Hi. I had a bowel resection last November for a T3N1 cancer and an operation in January to remove a secondary in my lung. We were told that the chemo I was prescribed could only be given once because of the possibility of permanent nerve damage and since I am at high risk of the disease returning, we decided not to have the chemo now and give ourselves a ‘get out of jail free card’ if it does come back. This may not suit everyone, but having talked to a number of medics most of them agree that we have made the right decision for me and that is the operative word..... everyone is different and your decision is dependant on what is best for you and your husband. It is a hard decision but once you have made it you will feel better. Good luck.