Newly diagnosed and in shock

[EmmaF]

Hi everyone,

 

I was diagnosed this week with Stage 4 pancreatic cancer which they believe has spread to my ovaries, peritoneum and liver.

 

I’m 38 and don’t smoke or drink so very much in shock at the moment and trying to take each day as it comes.

 

I’m currently waiting for an endoscopy for biopsies and then will have to wait a week or so to speak to the oncologist about next steps.

 

Not really sure why I’m posting other than I guess wanting to hear other people’s stories and hoping to find some inspiration that even though it can’t be cured maybe there will be some joy ahead.

 

Thank you  

[Sonia1]

I am so sorry to hear this Emma

 

I finally took the step to share dad’s journey so far on the forum today and was so upset that my 61 year old dad is having to go through this at such a young age - Reading the fact you are 38 years old breaks my heart even more.  
 

I am in no place to offer any advice as such to you but I will be sure to say a prayer for you tonight before bed. I really hope the Oncologist can suggest a plan of treatment that works for you. 
 

I wish you all the best xxx

[Borobi]

Gosh Emma. That’s awful. My very fit & healthy husband was diagnosed at 65. 38 is no age to get this awful disease. Hopefully the chemo will shrink the tumours and give you some time. I hope you’ve got lots of support around you. 

[Lornacath]

Hi Emma, so sad to be having to deal with this at your age. Please make the most of every well day that your not having treatment. I regret getting so caught up in hospital appointments that I didn’t do the things I wanted to do with my mum whilst she was still well enough. Take care lovely I will be thinking of you x

[Sandyvon]

Emma: I’m Stage IV as well but was fortunate to have the Whipple surgery before it went into my liver. I can recommend that you ask for Next Generation Sequencing to determine if there is a genetic mutation that can be treated with targeted drugs. I feel very fortunate that I’m receiving targeted drug therapy which appears to have held the cancer in check.

 

Please ensure that you have full confidence in your oncologist. I had to fire one because she was giving me a death sentence. 
 

I’ve accepted that I have a chronic disease that can’t be cured but has to be managed. Fortunately, I have an excellent manager in my oncologist. 
 

Best wishes. 

[broju]

So sorry to read your post, Emma. I urge you to talk to the nurses on here. They are very knowledgeable. They were a great help and guidance to us when my husband eventually agreed to call them. He was diagnosed at 74  having  previously been very fit and healthy. My heart goes out to you. You need strength and persistence to push your case so I hope you have support from family and friends to help you on your way.

All my very best wishes. Xx

[EmmaF]

Thank you to everyone who has replied. I’m still very much in shock and expecting to wake up at some point.

 

Sandvvon thank you so much for your recommendations, I will certainly follow that up. Would you mind letting me know who your oncologist is? I’m being referred to the John Radcliffe, Oxford I believe.

 

I’m very lucky with my support network. Just hoping that with a bit of luck and with their support I might be able to hold it back for a bit and support my little boy for as long as possible.

Thank you  

 

[Sandyvon]

Emma: I’m Canadian. We have a national Medicare system, so we tend to not have too much choice who are specialists are. That being said, we can switch specialists within our province. When I needed to switch medical oncologists, I did my research and asked for a particular medical oncologist with an interest in gastro cancers and research. My medical oncologist is extraordinary as he is brilliant, hard working, kind, and treats all of his patients the same way. 
 

I also see a physician who is an Integrative Medical Doctor who has taught me a lot about the importance of food “Let food be thy medicine and medicine be thy food”.  I changed my diet to support my liver and significantly decreased sugars, simple carbohydrates, and processed foods. I also don’t drink alcohol. I focused on exercising so that I could be as physically strong as possible. 
 

You didn’t mention how you had been feeling to lead to your diagnosis. I’m hoping that you’re well enough to incorporate or maintain your lifestyle so that you can be as strong as you can be for your treatment. 
 

You must feel so over whelmed but please do not give up hope and your plans for your future with your son. 

[broju]

Ah, yes. We visited a nutritionist who advised pretty much what Sandyvon has said although we'd widely read some very good books all of which are currently on loan to friends. The nutritionist did give us a diet/recipe sheet which proved invaluable as we struggled some days! My husband's liver readings were troublesome almost from the start of his chemo. I wish we'd read more about diet at the very beginning as the dietitician at the hospital had told us he should eat high fat, high calorie foods to keep his weight and strength up for the chemo.  There is a balance to be reached which is difficult at times.

Please do make and keep contact with the nurses on here. The John Radcliffe is held in very regard so you should be in good hands. 

Xx

[EmmaF]

Thank you Sandvvon and broiu, that’s all really helpful.

 

 I’m actually feeling really well - I just have a pain in my stomach which is how I got diagnosed but have none of the ‘normal’ symptoms- I haven’t had any weight loss and my liver function and blood counts were normal when I had a blood test about a month ago (although of course that may have changed!). My tummy is just achey although I am finding my appetite is a bit reduced now.

 

I’m due to see a dietitian soon so will make sure to get some advice around supporting my liver, thank you. I’m currently trying to eat as healthily as I can and as often as I can, bulking it up with full fat yoghurts and bananas and calorie-heavy smoothies. I’m walking every day and am doing as much of my kickboxing (my hobby!) as I can although I’m finding my mobility restricted now in my core. I never thought I’d be so grateful for not losing weight!

 

Thank you for taking the time to get back to me and for the support. This is all very frightening so it’s good to talk to people going through it. I know I can’t cure it but hoping that with some fight I can be around for my son a bit longer.

 

Thank you

[Sandyvon]

I’m very glad to hear that you are feeling well which will bode very well for your treatment plan.  The only symptom I had was pancreatitis so I had hoped my tumour was benign. 
 

Best wishes. 

[Jenny.0]

Hi Emma.

 

I am the same as you - Stage 4 but it was too late for surgery for me because it is wrapped around an artery. I was diagnosed after losing weight (22kg in 6 weeks - I was overweight though so am now at ideal weight!). Other than being tired, I had little or no symptoms otherwise. I am 57 and was diagnosed in May last year.

 

I am about to have my 23rd session of Folfirinox which, so far, has removed my secondaries from my lungs (they are not sure about my liver because it is very fatty with the chemo but its not looking any worse so that's good!) and my primary cancer is stable, not growing. So I am buying myself time.

 

Don't be afraid of what's coming because the chemo (if that will be your treatment) isn't that bad (in my personal experience) and you are young so hopefully can live with the treatment and also maintain a reasonable standard of living (I have - been doing all sorts on my bucket list). As others have said, it could reduce your tumour enough for surgery. From what I have seen, everyone reacts differently to treatment so there is not a 'one size fits all' because the various stages and severity of this cancer seem to make it difficult to do.. just trust your oncologist - I am at Oxford also and I think they are great!

 

I have heavily relied on the nurses at PCUK for factual information and they have been amazing. I am also lucky enough have a local hospice that I get emotional support from because the diagnosis is a bit of a shocker and I needed help to process it. Hospices do many therapies and sessions to help living with cancer.

 

I hope that helps in some way.

 

Jenny x