Treatment plan

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Hi, I received a telephone call from the specialist nurse to confirm cancer after having biopsies taken and scans.

I have been told that I will have a appointment in clinic later this week, she told me that I would have chemotherapy and radiation before surgery and that sometimes this can stop the bowel functioning correctly so a stoma may be needed before treatment. Anyone else experienced similar?

I'm 38 and had the horrible job of telling my teenage child and close family last night.

I had my appointment today and the advice is to have a stoma before starting treatment of chemotherapy and radiation.

Next step is a PET scan, the tumor is T3. So many questions but unsure where to start!

I have received my appointment to meet with the stoma nurse next week, the plan is to have more biopsies taken and have the stoma at the same time while under general anesthesitic. I have been told that this is my choice with regards to the stoma but their recommendation as treatment can cause the tumour to swell causing worse symptoms. I currently have some pelvic pain and bleeding on occasions. Due to the location of the tumor in the lower rectum, surgery would ultimately mean removing the return and a permanent stoma.

Has anyone else had similar experience? Did treatment cause symptoms to be worse? How did you manage your stoma?

MrsBJH over 3 years ago

Hi Happy 14 I just dropped by and thought you'd not received any reply to your post then I noticed you now have so this must've been duplicated.

I've a different cancer to you so I hope that your treatment plan is going well.

Sending you gentle hugs, B xx

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Veggie lady over 3 years ago

Dear Happy 14,

My cancer and treatment sound very similar to yours - do have a look at my profile. I was diagnosed with a low rectal tumour, T3N2, in December, and my initial treatment plan was identical to yours. Today six months later, I have no tumour and just one day of radiation left and no op planned. I had the colostomy first - not easy to get used to, very steep learning curve, but I did get used to it and it honestly is no problem now. The stoma nurses are really helpful and supportive. 3 months of Capox chemo was very hard as I had a lot of side effects, but I got through it. I was very glad of the stoma during weeks of acute diarrhoea. The post chemo scan showed “no evidence of a tumour” but they decided to radiate, for 1 week instead of 5, to zap any residual cancer cells. If nothing untoward happens, I won’t need an op any more! Yay! It has all been worth it! I know I am very lucky, and I know it might reoccur (30% chance apparently) but for now I am very happy...a very different feeling to how I felt six months ago, when I was at your stage. I know exactly what you are going through. It can be a hard journey but you will get through it. I’ll keep my fingers crossed that you have the same response to chemo that I did. Big hug x

Happy 14 over 3 years ago in reply to Veggie lady

Thank you veggie lady, your response is really helpful and I'm so pleased that you have had a positive response to treatment, that is brilliant, you must be so relieved.

I am now one week on from having my colostomy op, which is going ok. I guess it just takes time and practice to get into a routine with it. I have my appointment with the consultant oncologist on Monday to find out the start time and plan for chemo/radiotherapy.

Take care xx

Veggie lady over 3 years ago in reply to Happy 14

So pleased you are managing well with your colostomy, very well done. It initially took me nearly half an hour to measure up and change the bag - but within a few weeks I didn’t need to measure and now the whole change takes me less than 2 minutes, once a day.

I have now finished the radiation and as expected diarrhoea has kicked in ... but it is no problem because of my stoma!

Good luck for Monday - it is great to have a plan in place xx