Newly Diagnosed and Overwhelmed

Hi HyoiggA

welcome to this friendly group where no one really wants to be but you will be well supported. 
My diagnosis was different but I can confirm that from diagnosis and then various scans etc until you get a pathway forward it’s a very difficult period. Once you get a pathway forward it’s easier to cope with. 
everyone here has a unique journey but hopefully someone who has had a similar experience will reply soon. 

Hello Hyogga,

Your reaction is quite normal, so you are in good company on these pages. There's a great deal of information here, based upon members' personal experiences and if you click on anyone's name you will probably find a summary of their own treatment.

It's best not to search the Internet for reassurance as some of the findings are out of date and unhelpful. However, you might look at the NHS and Cancer UK sites, as well as here, for straightforward and current information. Once your diagnosis is confirmed you will receive first class attention from experts who have seen it all before. Results from scans, etc. can take some time to appear because specialists have to peruse the images, so don't worry. When they gave me the news I assumed that I would be dead in three months, but that was five years ago and life is pretty good as I write this.

Do not worry about matters over which you have no control. 

Best Wishes 

Dulac

Thank you for the kind welcome and for understanding. I agree, this waiting period before the biopsy and treatment plan feels extremely difficult. Not having a clear pathway yet makes my mind go in every direction.

I am hoping that once the colonoscopy, biopsy, and oncology plan are in place, I will feel a bit more grounded and know what I am actually dealing with.

I appreciate your support, and I hope someone with a similar experience can share what the beginning of this process was like for them.

Hello Dulac,

Thank you for your kind and thoughtful reply. It really helps to hear from someone who understands how frightening the beginning of this process can feel.

I know I should not keep searching the internet, but it is difficult when everything is still uncertain and I am waiting for the biopsy and final diagnosis. My mind keeps going to the worst case scenario, especially because the CT scan sounded so serious.

Your words about thinking you had three months, and now being five years on with life still pretty good, gave me some hope. I know every case is different, but it helps to hear that the beginning does not always tell the whole story.

I appreciate your advice and support. I am trying to focus on getting the biopsy done and waiting for the specialists to give me a proper plan.

Best wishes,
Hyogga

Hello Hyogga, I hope you know a bit more now, it is stressful waiting for treatment as I was last September for my stage 4 hepatic flexure + diagnosis. Now I am cancer free and it's highly unlikely to return. I had 6 months monthly immunotherapy with no reactions, so ignore the pages of possible reactions they'll give you. followed by right hemicolectomy + + and 2 weeks in hospital. Hope your story goes the same.

Thank you for sharing this. Your outcome is very encouraging, especially because my suspected primary is also in the right side of the colon. Do you know whether your tumour was MSI-high or mismatch-repair deficient, and where the stage IV disease had spread? Also, which immunotherapy drug did you receive before the right hemicolectomy?

Hi, I don't have more info on the type of cancer but had spread to the duodenum.

I had ipilimumab and nivolumab

Hello hyogga

I have been told following a colonoscopy (arranged due to symptoms) that looks 'endoscoply malignant) and is strangling the tube. She say 'have you only recently had symptoms? Looks like irs been there while'. Twisting fear in my guts not knowing full story. Absolute hell it is. Like you say barely any symptoms. Blood test all fine. But looked mutant on the screen. 

• I just wanted to say hello and so we know there be others facing same absolute terror. I dont know which will  be worse. Not knowing or knowing. I wish they wouldnt leave so many questions unanswered and messing about. Absolute terror and fear is where I am at. How do you feel having these results. I read staging has its pitfalls because it doesnt take into account cell type or how ir will respind to medicine. Precise situation is apparently very variable. So shocking barely feels real? How are you tackling/coping mechanisms? All different arent we. Brain gives me repreive an hour then hour of fear and dread. I dont get why it needs to be a thing. Horrible :(

Hello Moralsupport1,

Thank you for replying. I am sorry you are going through the same kind of fear and uncertainty. What you described is very similar to how this has felt for me: very few symptoms, then suddenly being told that something looks malignant and may have been there for a long time. It is difficult to understand how something so serious could be present without making us feel much more obviously ill.

I have now had the colonoscopy. The doctor found a malignant looking mass in the ascending colon and could not pass through it because of the narrowing, so biopsies were taken. I am still waiting for the pathology and molecular results, which means there are still major unanswered questions about the exact tumour type and which treatments may work.

I agree with you that the stage shown on scans does not explain the whole biological picture. Pathology, mismatch-repair/MSI status, mutations, the exact pattern of spread, and the response to treatment can make a major difference. That does not remove the seriousness, but it means the first scan is not necessarily the complete story or a precise prediction of what will happen.

My coping has been inconsistent. Sometimes I can concentrate on the next practical step, and at other times my mind goes directly to the worst outcome. I am trying to separate what is confirmed from what is still suspected and focus on one result at a time, although that is much easier to say than to do.

The waiting and lack of clear answers are extremely difficult. You are not alone in feeling that mixture of disbelief, fear, and brief periods where the brain gives you a break. I hope you receive your pathology and a clear treatment plan soon. Please let us know what you find out.

Best wishes,
Hyogga