Awaiting diagnosis

Tiz 3 months ago

5 replies
103 subscribers
534 views

Hi all,

I posted on the welcome board last night and they pointed me in this direction. I hope you don’t mind me posting here, given that I don’t have a definite diagnosis yet. I would just really appreciate hearing from people who have been through the same!

I’m 38, female, have 3 young children, and am a doctor so make a terrible patient. My specialty is a long way removed from colorectal cancer! I know just enough to be terrified but not enough to be rational.

I had a colonoscopy last week because of bloody stool. I was referred on 2 week wait, but told it was almost certainly IBD because calprotectin was >2000. However they found no evidence of IBD, and there’s a 3cm bleeding, irregular mass in my rectum. It looked awful on the screen. The consultant said it could be a complex polyp and not cancer, but I can’t make any plausible sense of a polyp causing a calprotectin that high (it’s a reflection of inflammation within the bowel). I am 100% convinced that the evidence before me is that it’s rectal cancer. Unfortunately I go down a rabbit warren when I can’t go to sleep at night reading medical papers about a variety of related things, which of course doesn’t help. Last night I spent ages reading about calprotectin which has lead me to conclude that it’s likely to be T3 or 4 and possible mucinous which sounds like a bad thing!

I am struggling to get my head round all this. My husband is very supportive, but wants me to wait until we have an actual diagnosis (biopsy results should be back later this week or beginning of next week) before I look into more details. He is very wise, but I can’t stop myself. I have been completely fit and healthy all my life, only been to hospital to have babies and to go to work. This is completely out of the blue.

I think I mostly need to talk, rather than having specific questions. The not knowing and not having a plan is SO difficult.

If anyone had a calprotectin this high at diagnosis and has a positive outcome I’d love to hear from you. Similarly anyone with a mucinous cancer - either a good outcome or just what to expect from treatment!

And how quickly can I get expect things to move once I have the formal diagnosis?

Thank you so much.

roses26 3 months ago

Hi Tiz,

I’m really sorry to hear what you’re going through right now. My husband was diagnosed with rectal cancer back in May. He works as a registered nurse, has a knowledge of disease systems and therefore questions things more. I’m also a trained nurse and find that ‘knowing things’ due to my own background can be harder. So it must be really difficult for someone like yourself with a medical training. I know that the waiting for results feels like torture but you’ve done the right thing in joining this forum. I was in the same position with my husband back in May, which is why I also joined. Since then, I’ve had so much support and information from so many lovely people. It really helped us both during the difficult days.

Right now, the only advice I could give you is to try and keep busy if you can until you receive the biopsy results. I know how hard this waiting is, so just keep coming on here and talking, there’s always someone who will listen.

Take care of yourself,

Roses x

Kareno62 3 months ago

Hi Tiz and a warm welcome to the board from me too. I saw the awful bloody tumour on screen and commented ‘ooh that doesn’t look very good’ in my semi sedated state. They told me after that they do this day in, day out and were 99% sure it was cancer which the biopsy confirmed. They’ve not told you this so there is a chance that it is a polyp and hopefully the biopsy will confirm this.

If it does turn out to be bowel cancer (and it is an if at the moment) then things will move pretty quickly with scans and meetings and then there will be a treatment plan put in place. Try and stay away from all the in-depth medical stuff and definately stay away from google. There’s lots of info on here and the bowel cancer uk site has some good booklets.

i was diagnosed in 2016 - if you click on my name then you can see my treatment - and I’m still ‘no evidence of disease’ as are the 2 ladies that I buddied up with online. Bowel cancer (if it does turn out to be that) is notoriously slow growing but very treatable.

Please let us know how your results go and don’t forget that the support desk is available if you want to chat to someone in person

Take care

Karen x

Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

Tiz 3 months ago

Thank you both for your replies. It means a lot to know people are listening and understand. I’m trying to keep busy, but am also completely exhausted (I think just from the emotional toil of worrying all the time!). But every time I go away from my kids for a lie down I end up searching the internet and not actually resting, just making myself more worried. It’s so hard! I really just need a diagnosis. It’s only 4 days since the colonoscopy and it feels like a life time!

Cheekkat 3 months ago

Hi, I understand how worried you must be.

I am a Biologist and and ex SRN.

I have spent the past 12 weeks reading research papers etc on my cancer and trying to prempt the outcome of every consultant appt!

I have a diagnosis of Mucinous Adenocarcinoma ( of possible GI origin) from biopsy, that has resulted in a tumour on my ovary 18.5 cm.x 15cm x 12 cm. I also have 2 omentum metastases and 2 peritoneal metastases.

I most likely have an origin in fallopian tube, omentum ( primary peritoneal) or appendix or rarely the bile duct or pancreas.

I've had an ultra - sound scan, a CT with comtrast, a clear colonoscopy and gastroscopy ( NED), and a clear cervical smear and last week a PET CT to see if there is any progression of the disease.

CA 25 18

CEA 4.7

I was put on to the Suspected Cancer Pathway within the first week of my finding the tumour in my abdomen. Maybe you need to check you're on this ? I am now at 12 weeks with no conclusive diagnosis and no treatment which is pretty deplorable and may affect my OS. It looks like I'm stage 3C and my consultant has said its not curable, but treatable.

Devestating news even though i am 68!

My PET CT Scan is due to be reported tomorrow and today I had a CA 19 - 9 to rule out pancreatic cancer.

My consultant has told me he is pushing for my surgery to be done at Basingstoke and will include a treatment called HIPEC. ( LOOK IT UP)

The Basingstoke team are having a Complex Multi Disiplinary Meeting to decide if my case is a good candidate for the above treatment. I'm praying that it is of course.

This has been a roller coaster ride for me I had no idea, I was so ill. However I am glad that I have the knowledge to research around the whole subject. It is beneficial to me, I believe, to have as much knowledge about the cancer type I have and treatment options ahead.

Mucinous adenocarcinoma is a rare cancer and I would advise you to research as much as you need to assure you feel fully informed and know what to ask of your consultant.

Wishing you all the best and glad that you have a supportive partner.

Tiz 3 months ago in reply to Cheekkat

Sorry to hear it’s been such a long road to get a diagnosis and treatment plan. I hope you are able to make some progress soon.

Thank you for the recommendation about making sure I’m on the cancer pathway - I am, my GP referred me on that pathway. I feel very fortunate that my GP was proactive, and listened to my concerns and took them seriously. Even down to the receptionist, who I called to book a non-urgent appointment - she was in the process of making it for mid-September when she asked me what it was for, and slotted me in as an extra the following day. And although everyone was confident it would be IBD they still referred me on the cancer pathway to be cautious. I’m so grateful, especially as I know this unfortunately isn’t the experience of everyone.