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Just Diagnosed

stillpaul

Just seen the Oncologist

Just had a bit of a blow. I have just seen the oncologist. It seems that each time I see a Doctor I hear more bad news. I was told by the initial medical team that I had cancer in my bowel and two tumours on my liver. Now the oncologist is telling me, from the same test and results, I have three tumours on my liver and the cancer is also in my lymph nodes in my pelvis.

Okay, so he is still saying its all operable after chemo and even said and ticked the box to say its 'curative'. And the list of side effects from the chemo is terrifying. But it does leave me with some worries about hearing more bad news at every visit.

The other news is that I cannot start until they have had a result back to do with the genetics of the tumour, as that will determine if they need to add a biological drug alongside the chemo.
Not that I know what I am talking about. Unfortunately, the Macmillan Nurse was not there today.

Having cancer is one thing but this waiting and the uncertainty about my cancer is the hardest part. Please forgive the ramble but thoughts would be welcomed.
Paul

Clancy

Hi@stillpaul, it is always nerve wracking when you see the oncologist and scan times too. It sounds as if you have a good team who are offering solutions to you and are looking into adding an extra cancer battering drug, the biological drug. You will find everything moves along very quickly also, don't let it scare you. The nurse advisors on this forum are very good, and many of our lovely forumites. Read their profiles, amazing people, I am sure collectively they could write a book.
You ramble as much as you like, I do, it helps. Sending hugs.:x::x:

kitti

Hi @stillpaul I'm still trying to find my feet and still if I'm being honest feel I'd prefer to put my head in the sand! I know the appointments aren't easy and I find the reality of it all so hard, but my co-rectal nurse reminded me that if they know about something they will make their plan around it so I suppose them having all the facts means they have a solid treatment plan for you. I think the not knowing and waiting is the hardest, it's emotional torture and I ramble too but I think that's part of us trying to somehow make sense of this nightmare we find ourselves in. Sending hugs to you and your family :x:

stillpaul

Thank you so much for your helpful and suportive email. I think what I am mostly experiencing at the moment is FEAR! and i get scared when i lose my FIGHT!

x

Quote from @Clancy:
Hi@stillpaul, it is always nerve wracking when you see the oncologist and scan times too. It sounds as if you have a good team who are offering solutions to you and are looking into adding an extra cancer battering drug, the biological drug. You will find everything moves along very quickly also, don't let it scare you. The nurse advisors on this forum are very good, and many of our lovely forumites. Read their profiles, amazing people, I am sure collectively they could write a book.
You ramble as much as you like, I do, it helps. Sending hugs.

Polly 1

Hi @stillpaul its good that they are checking the tumour so they can possibly add another type of drug (as long as it dosnt take them too long!).

My hubby is on Cetuximab (alongside Irinotecan and 5FU) which you can only have if you are 'wild' not 'mutant' - they check the genetics to find out. Monoclonal antibodies like Cetuximab work by recognising and finding specific proteins on cancer cells. The names have MAB at the end.

Dont forget they have to tell you all the possible side effects you could possibly have so dont panic

stillpaul

Thank you and so helpful. I hope it all goes well for your husband and you. :x:

GD62

Hello @stillpaul

Sorry to read about your turmoil, but curative is a good prognosis and try not to worry but focus on the positive as I was told incurable and inoperable, so cheer up mate :)

Hugs and positive healing thoughts ;)

stillpaul

Thank you-that brought tears to my eyes-but I needed that. Really Big hug to you back

Baxter2

Hi @stillpaul

I think many of us can relate to your post and I certainly can!

I used to suffer awful anxiety just walking into the hospital, never mind sitting waiting to see my oncologist. I had to concentrate on calm down breathing techniques before I went in. The reason was that she was so negative and always seemed to deliver bad news too in a way that caused me such distress despite my attempts to try and keep myself as upbeat as I could. I came out of every single appointment crying, without fail. (Fortunately, I changed oncologists and have never looked back! )

This ‘limbo’ you find yourself in is maybe one of the worst. It’s a real positive that your oncologist is still talking ‘curative’. Waiting and worrying is awful and I remember the feeling so well!

You’re doing just fine.....just hang in there and once the treatment starts, you’ll feel a good bit better I’m sure!

K????❤️

Clancy

@stillpaul, don't be frightened of your chemo either, we are all unique and react differently to things. Take all the anti sickness they offer you and think of it as your ally. We are so lucky really, if something doesn't suit we are offered an alternative. If they have the foresight to be talking curative, how positive is that? Keep in touch.:x::x:

HH79

Hi @stillpaul so sorry to hear about your diagnosis but you’ll find great support here. Emotionally the worst time is what you are going through and hang in there. I am so happy to read that you’re on a curative path and chemo is amazing stuff! We are all here to help you on your journey with any questions and great advice I had was to think of chemo as your friend. Grab all the support you need eg local hospice will offer array of services for you AND your family, counselling etc and make sure you just see those in your life that’ll help boost you. Good luck and once you get started you’ll feel better and in control :x::x:

LankyYankee

Please hang in there @stillpaul you are probably getting tired of hearing it but curative is awesome! I'm stage 4 since diagnosis a year ago and started palliative Chemotherapy three days after my diagnosis. My original life expectancy was as short as 3 months yet here I am at age 42 still on chemo battling the cancer and living a good quality of life with my kids and husband. I'm still working 30 hours a week on my feet as a Cancer nurse specialist so if you have any questions I can help with fire away. Here for you and your family :x::x::x:

stillpaul

Wow-trust me I never tire of hearing this. I think I am noticing that immediately following a hospital appointment my mood drops-I guess it’s reality paying a visit. Then it picks up and I reach out. Thank you for sharing this.
I am waiting for the Macmillan Nurses to call me back so I can have a discussion about why I have to wait for chemo and can’t start now and introduce that biological drug later, if the results, that we are waiting for, show that.

Liriodendron345

Just so you know @stillpaul I started FOLFIRI chemo whilst waiting for genetic analysis of tumour, Cetuximab was added about 9 weeks after starting ....... take very good care, Kim :x:

stillpaul

Thank you-yes I am waiting to talk to the macmilliam nurses about exactly that. Thanks for you supportive response. I have my assertive head on

jinnyp

Hi @stillpaul, sorry I haven’t had time to read all of your replies so apologies if I say something that’s already been said!

Firstly, welcome ? glad you have found this place. It is a great source of information and support, there are people on here with a wealth of experience and information- please come here and ask whatever/whenever you need, there will always be someone with information or just to listen and virtually ‘hold your hand’.

Curative is great news although nothing about this horrible disease is good the fact that there is a chance of curing it is excellent.

I am stage 4 and on ‘palliative’ chemotherapy although am hoping that it will do enough to give me a small chance of ‘curative’ surgery at some point. I have had 6 cycles of Folfox chemo and started it before my results were back to see whether I could have the additional biological drug. It was added on cycle 3 when the results were back.

I think there are a few of us who were in that position.

I hope that you can get some answers and clarification when you speak to the Macmillan Nurse.

Take care, Jane :x::x:

eyeofthetiger

Hi @stillpaul Great to hear that your treatment is still curative and you are otherwise fit and healthy. I was diagnosed Stage IV with liver met and lymph nodes in April 17 and I was also told I was on a curative treatment path. I had emergency bowel surgery, 6 x Folfox chemo without targeted therapy as tests came back that I was to join Prof X and his X Men, as I am ' RAS mutant' and unfortunately it doesn't work. The Folfox chemo shrunk the liver tumor from 4 to 2cm, then had liver resection and gallbladder removal and now on Folfox mop up chemo. My last scan and bloods show that at this moment in time there is no evidence of cancer. Hope they can start your treatment soon and getting you a step closer to being NED too. :x::x::x:

stillpaul

Just so inspiring for me-thank you

Caraeliz24

@stillpaul I think someone mentioned this but I was also started on folfiri without cetuximab whilst waiting for the genetic results and hen given a full course combined once they knew.
I had advanced bowel tumour which had been removed at time. Number of liver mets across both lobes were discovered following chemotherapy, I had ablation and right hepatectomy on my liver last September and just finishing mop up chemo. My scans before Christmas we’re no measurable evidence of disease and I have a scan on Monday and hoping for the best.
I know it doesn’t for everyone but the chemo was very effective for me on my liver so whilst I my lymph node involvement was only round my bowel hope this gives you some hope!
It can be overwhelming but just put one foot in front of the other and keep pressing f forward.
Oh and just seen @eyeofthetiger post below! I do believe we had the same surgeon!

stillpaul

Thank you-I am trying to stay with what I know and let letting my mind and anxieties wander. I have a start date now for chemo-16th Feb and meet the chemo team on the 13th Feb. It’s feels a long way away but I am being reassured that will not effect prognosis. I have also been reassured that they are going to start treatment and introduce the other drugs on the next cycle, depending on the genetics results. So a little more waiting but I am keeping myself busy distracted and healthy. :x:

HH79

Oh @stillpaul come Tuesday to Hemel meet! :x: