Bowel cancer treatment and side effects

Elmac

Capecitabine and Lynch Syndrome

I met my oncologist on Wednesday, and i am being put on a 3 month course of Capecitabine.

He also informed me that as well as doing biopsies on the lymph nodes, they also do them on the actual tumour. As a result he mentioned that mine could be hereditary as it was missing one of the protein markers and he is sending me to the genetics team to see if I carry the Lynch Syndrome gene.

Interestingly enough when my dad died 35 years ago in Australia, our GP there told me and my two sisters to get tested on a regular basis as it was thought to be hereditary! Apparently if one does carry the gene, then the tumours appear to be mainly in the right hemi region and are fast growing - both these apply to me. I had a colonoscopy 2 years ago which only showed a couple of extremely small polyps near the rectum which were benign, but this year when I had the colonoscopy in March it showed a large tumour up near the small bowel and in fact that had grown from a T3 on CT scan to a T4 by the time of the operation 2 weeks later!

Hopefully the chemo which I will start in the next couple of weeks will blast any stray cancer cells, but one never knows. I just have to keep positive and keep walking!
Elaine

SheliasDaughterAngela

My mum was referred to the genetic team in January, she had her appointment and blood tests in March/April and we are still awaiting the results which we were told can take up to 3 months :x::x:

pollypops

Hi @Elmac, I'm 'Lynch Like', which means they are not sure if I have a germline mutation or not. There is a Facebook Lynch group if you're interested, they are very active. Did they tell you which protein is showing a loss? MLH1 is common and can be Lynch, but often is not, and the others are more likely to be. I have a colonoscopy every two years for life..Yay! The other main risk is endo cancer so women usually opt for hysterectomy after completing families, age 40 or so.

Like you, between CT and operation my T staging went up, but my surgeon said that's not because it had grown, but because it is more accurately staged at operation, and I had two MONTHS between colonoscopy and operation. With that length of time and Lynch not sure I believe him mind!

I second what David is saying about asking about immunotherapy too.

hope chemo goes well, any other questions, ask away :x::x:

Elmac

Thanks @SheliasDaughterAngela and @pollypops - this website is so up beat and reassuring and so very informative. As I'm in my 70's not worried about hysterectomy at this stage in my life, but obviously concerned if I do carry the gene that my children and grandchildren get tested and put on the surveillance lists early.

charleyb

@Elmac My husband was tested for genetic factors, but everything came back negative, even tho every maternal family member has had cancer of some sorts. However the advice from the genetics counsellor was that my children have a moderate risk of cancer, in there opinion esp bowel cancer. So all immediate family members have had an urgent colonoscopy, and interestingly his mum has found she has numerous polyps and diverticulus (it is her side the cancer is on). My children will be screened from 25yrs. We found the genetic counsellors really helpful and informative.
Same as @pollypops my husband on CT scan had an almost complete response to radio taking it from T4 to T1, however on biopsy it was a T2 with 3 lymph nodes, it hasn`t grown in this time its just more accurate than the scan. Wishing you lots of luck with chemo :x::x:

Elmac

Thanks @charleyb - just been reading your and your husband's profile - what a time you had had - both so young with small children - as I'm in my 70's just want to see my grandchildren grow up and do all the things on my bucket list and reckon I've got 10 years of travel still to do.

More worried out my children and grandchildren if I do carry the gene, but at least they will have advance warning - I am very interested to talk to the genetic team for I am a family historian and most of the death certificates I have of the family show heart disease rather than cancer.

Bear G

Hi @Elmac
I’m tagging one of our former moderators @Smiley2 in the hope she’ll pick this up. She knows more about Lynch Syndrome than anyone I know on the patient / relative side.
Also tagging @Charlotte Nurse Advisor for her expertise.
:x::x:

Elmac

Thanks @Bear G

Charlotte Nurse Advisor

Dear @Elmac,

Just responding to @Bear G tag although I don't think I can add much more to what others have already so helpfully said.

Until recently Lynch Syndrome and other genetic conditions were thought to be responsible for only around 3-5 % of all bowel cancers. However we now know that this is probably due to under diagnosing the condition which is why NICE guidance changed a few months ago to state that all patients diagnosed with bowel cancer should be tested for Lynch (even if they do not have a family history). This is in an effort to get a more accurate picture of the incidence of the condition so that people with Lynch and their relatives can be appropriately screened.

Testing is quite a complex process and as others have said can take a few months to complete.

I would also just like to comment on the change in your tumour stage in 2 weeks. As your consultant said in this very short period of time it is far more likely that the CT 'understaged' the tumour and the pathology staging is the most accurate so please try not to worry that your tumour was rapidly growing within those 2 weeks.

With kindest regards,

Charlotte

KatieR

Thank you all for explaining the Lynch Syndrome Im going to get John tested as his uncle had bowel cancer too ...

Elmac

Thanks @Charlotte Nurse Advisor for the update on the Lynch Syndrome - funnily enough in this mornings post I have received some leaflets about the Syndrome from the US Society, I shall take some to my GP's surgery when i go for my blood test on Wednesday, and to the C-Scape group in Brighton next week and leave some at the Macmillan centre as well. The more people know about it the better!

Thanks also for the clarification about the T3 to T4 possible understaging - just hope no stray cancer cells ended up in the peritoneum and will in any case get blasted to oblivion by the chemo.

Elaine

Lizalou

@Charlotte Nurse Advisor @Elmac

I have read this with much interest as my father had bowel cancer like me, but we live in one of the parts of the country where Lynch is not tested for (Yes, I have written to my MP and have received a long and detailed reply)

Thinking about my own children, how vital is it that we are tested? The only advice so far is that the children should have a colonoscopy 5 years earlier than my diagnosis age.

Charlotte Nurse Advisor

Dear @Lizalou,

Yes, unfortunately as with much NICE guidance it can be slow to be rolled out across the country. Is it the intention to implement it in your area? I do hope so!

There is concern now that rather than Lynch being an extremely rare condition as was previously thought rather it is an under diagnosed condition hence the new NICE guidance.

Although there is every possibility that it is an unlucky coincidence that both you and your father were diagnosed with bowel cancer Lynch Syndrome should be ruled out, as you say, for the benefit of your children if nothing else.

Is it possible to ask your GP to refer you to a family cancer clinic or genetic clinic where you can at least discuss this with a clinical genticist? Certainly the genetic counsellors I have spoken to are always happy to see patients who are concerned that they might have an hereditary condition.

Best wishes,

Charlotte :x:

Lizalou

Thank you so much @Charlotte Nurse Advisor .

(When I can get my head round it, I will post the reply that my MP sent me from the Kent Clinical Commissioning Group .....admitting it won't happen due to funding problems.)

Charlotte Nurse Advisor

Hi @Lizalou,

Oh gosh that is disappointing to hear. I will definitely raise this with our policy department as it is something that we should definitely be campaigning for.

Charlotte :x::x:

Lizalou

Thanks for your concern @Charlotte Nurse Advisor . I need my husband to scan the letter at work before I send it to you and the campaign dept. But it makes for rather worrying reading....as I understand, only a small proportion of bowel cancer patients are tested, which then gives a low overall result.

Smiley2

Hi @Elmac (Thank you @Bear G) My husband had Genetic Testing last year and fortunately in the end, the confirming blood test actually showed that he didn't have Lynch Syndrome even though the tumour tested positive at 99% a few months earlier. During that time, I researched Lynch Syndrome as knowledge is extremely important. The Charity below is extremely informative and supportive. They consider 'Knowing is better than not' and are working very hard to raise awareness especially with GP's (I had to take leaflets in to ours and explain what LS was!) It's classed as rare but it's only rare as no-one knows about it.

It took us a long time to 'get our heads around it' as it can affect many people in the family tree. We have two children aged 21 and 23 but we knew that it was better that they were tested frequently than not knowing at all (Like the late Stephen Sutton)

Also remember that if you do test positively, that colonoscopies every 3-6 months (That's the recommendation) will detect polyps that will be removed immediately.

www.lynch-syndrome-uk.org

PS My husband was initially told Stage 2 by the surgeon but Pathology confirmed Stage 3 (T4) and that was in 2012 (He's still doing well)

Clancy

@Elmac, I had never considered getting tested for Lynch syndrome, and never broached the subject with my team ever. My father too had bowel cancer and passed in 2009. You have certainly opened my eyes, although I have been told that because he was 72 it wouldn't be connected to my bowel cancer.:x::x:

Caraeliz24

@Elmac I have lynch syndrome - I’m MSH2 deficient - which means high risk colon ( been there done that) and particular gynae cancers. I am in a screening programme and glad I now know as can make appropriate descisions as and when time comes

As someone has said Lynchburg syndrome uk are fab - they have a Facebook group where you can get loads of advice and support. They also hold a yearly conference with all latest research.

For your family - if you carry it- at least they ca be proactive and be screenedz hopefully then avoid finding themselves in our position

Elmac

Thanks @Caraeliz24 - They are still not sure whether I carry the gene or not - they have done 2 tests here in Brighton which are inconclusive, so going to forward me onto Guys to confirm whether I have the Lynch Syndrome or not - but that will take some time. As you all say it is for the family that I want to know. My daughter in Scotland advised her GP of the 3 generations in our family - my father, my nephew and now me, and within a fortnight she had heard from the genetics team in Scotland. Will be interesting if they test her before me!

They seem to think that because some of us are older when we get colon cancer that it can't be linked to an inherited gene, but I don't think they know enough about it yet.

Just read your profile and sounds like you have been to hell and back and you are so young compared to me who has had an interesting life - now aged 73, but I do want to keep going for another 20 years - provided I keep my marbles!
Elaine

SheliasDaughterAngela

Mum had her test in April but we still haven't had the results back yet, should really chase this up althiugh we were told at the time it will take months to come back. We were seen by a genetic team and 2 blood tests were taken.