27 years old with primary bowel cancer and ovarian met

Hello and welcome to our part of the forum but I am so sorry to read about what you and your mum are going through .

What a terrible time you have had getting a diagnosis and it is something younger patients can encounter as their age often throws people off but that is a message that Bowel cancer awareness is trying to correct . 

No wonder you are feeling rough , that’s a lot of surgery . However it is very good news that you were operable and now reached NED . Bowel cancer can still be very treatable despite having spread and is also in a good position compared to other cancers in that it has a variety of treatment options which really does open up doors and changes outcomes . To put that into context my mum is 11 years now into a stage 4 diagnosis. Her age would start to impact her treatment if required in the future from a frailty point of view but not because she has ran out of treatment options . She has long periods with no treatment for years at a time . Many stage 4 patients have spread to one other organ , have treatment and do not have any other issues . Chemo is similar to other stages of cancer and my mum has not actually had more aggressive treatment than stage 2/3 patients have had . The scanning is robust and anything that did pop up was removed before it had time to grow . Just one persons experience but you are in a much more favourable position than she was starting out . She was inoperable . Chemo can be very effective .

I hope that has given you a bit of encouragement . I will leave others to help with the stoma aspect as I really don’t know but if you look at the bottom of this page there is a group to assist you with that too. You are not on your own with this and we will assist you as much as possible until you have this firmly in your past !

How is your mum getting on ? You should hopefully be home very soon . Each day does make quite a difference in recovery .

Take care ,

Court 

Hi Orchid

May I also welcome you to the our forum, I am really sorry to hear that you have had such a difficult time but you now have a proper diagnosis and, having had surgery, you now have a chemo treatment plan.  I hope that you are recovering well from your surgeries.

It is most important that you speak to your oncologist regarding what chemo they intend to give you.  You must ask whether your hospital carry out DPYD gene Testing to check whether you have a DPD deficiency.    If they do not test routinely, ask if you can have the test, particularly if they plan to treat you with 5- FU or Capecitabine.  Not everyone has this deficiency, but if they do, treatment can be adjusted to prevent some side affects.  It is a very simple blood test which hopefully be routinely carried out in all NHS hospitals very soon

I was diagnosed as Stage III in 2011 and, like you, even though I had classic symptoms it was almost 12 months before I was sent for a colonoscopy. I had surgery to remove about 3/4 of my large bowl followed by six months of chemo.  In the past bowel cancer was thought to be an older persons disease and some clinicians unfortunately still think that way, but your's has been found and you now have a treatment plan and you will be carefully monitored and looked after for many years to come.  

Court has told you about her mum, who has been a real inspiration to many of us on this forum, and I'm sure many more of our members will be in touch with you very soon.

I can understand how very difficult and stressful it must be that you are unable to have visitors but I hope you are keeping in touch with family (particularly your mum) and your friends by phone or video calls.

Macmillan have a support and help line, the number is 0808 808 00 00 (a free to dial number) which is available seven days a week from 8:00 am to 8:00 pm and you can ask to speak to someone for emotional support.  They offer support with all cancer related matters, and there is always a friendly voice at the end of the line.  Often it is easier to tell a complete stranger how you are feeling.

Do keep in touch to let us know how you are getting on.

I send you and your mum my best wishes.

VickiLynne

Hi Orchid, im so sorry to read you and your Mum are having a rough time, i now its not nice, but this group will help you a lot, as i found out when i joined not long ago, i had a bowel operation in may and have a stoma, but i knew my pouch would be there when i woke up, for you it is hard to take in at the mo ,but it will get easier to manage, i learnt from people on here ,some of them give names to their pouches(i prefer that name to bag)my pouch is called MOBY DICK,after the whale ,due to the funny gassy nose it makes at times, yes i was embarrassed the 1st time it went off ,in the company of my new partner, but now we both laugh and say there Moby Dick blows, but you will get a lot of help from your stoma nurse,she will be there when needed, its not nice being alone in hospital on your own, i was there a week on a ward by myself, but the sooner you learn about your pouch, the sooner you will be able to go home, anything you need to ask or know ,please post it on here ,there is always someone to answer the questions you ask, just take 1 day at a time, and think of a name for your pouch, and get to know it, yes i curse mine at times, but we are still around, and thats what matters,i too have another hurdle to face in the next couple of weeks, but i know these lovely people on here will give me all the help, guidance, and answers i need,,

Take care ,im sending you a hug & love for your Mum & yourself xx.

Hi Court, 

Thanks so much for your reply, you have no idea how much better you've made me feel about it. It's all been such a shock and when I found out it had spread, it just made me assume the worst - that they won't be able to cure me. I've not spoken to an oncologist yet so still have a lot of unanswered questions about treatment etc. I feel my trust in doctors is broken due to them missing the bowel tumour initially and as a result having to have 3 surgeries. I just don't trust them anymore and finding it hard to believe they know what they're doing and can fix me.

My mum isn't doing amazingly, she's becoming more muddled each day. I'm missing her terribly, I just want to be home with her. I'm moving out of high dependency tomorrow at least however, I'm extremely underweight and being fed through and a PICC line so they won't let me home til I can get some weight back on.

The recovery from the third surgery has been extremely slow, my body has thrown in the towel. Making tiny bits of progress each day but its baby steps. I'm still in high dependency but will be moving to a ward tomorrow which is one step closer to come. 

I'm awaiting an appointment with an oncologist to discuss my treatment plan. All they've said is they will treat it aggressively and I will definitely need chemo. They can't give much more info than that. I will definitely inquire about the DPYD testing. If they don't offer it, will they still do it if I request?

I have a great support network of friends but I'm feeling so depressed about everything I'm finding it hard to speak to them. Macmillan have been to see me while I've been in hospital and have referred me to the Maggie's centre psychologist so I'm hoping they can give me some strategies to cope with it all.

Thanks for your kind words, I hope your treatment has helped you. 

Hope you get home to be with your mum very soon . I am so sorry you are both having to endure this , particular just now .

It is so frightening but hold onto the fact you are currently disease free and they will have a good plan to ensure it stays that way . You advocated for yourself and got the help you needed before this became any worse . 

I understand you have lost trust in the team that were responsible for your care . Some oncologists are great . The one my mum has now is just amazing and I completely trust her . I hope you have a better experience in that area . But if you don’t immediately click let me reassure you oncology care is governed by a lot of standard protocols firmly written down by NICE guidelines that most follow to the letter . It’s a pretty standard approach but much better when delivered by someone who cares . We can help you navigate the system and we have a helpline here 0808 808 0000 and you can check anything out with them . They can point you in the right direction to get the best information so this does not happen again . If at any point you feel you are not getting the right care you can seek a second opinion. It’s your health and it matters . Hopefully this won’t be needed and I suspect it won’t but if so there are other ways to ensure your health needs are assess .

Take special care and I hope you are one step closer to home today ,

Court