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Newly diagnosed 45 yr old mum of 4


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Hi all, just wanted to say hi and introduce my self. Newly diagnosed on 18th June after 4 months of thinking it was severe constipation...that's a rant for another day! Just hoping to find new friends that I can talk openly to. Waiting on next set of tests at Specialist a centre to determine type of tumour so the Oncologist can provide what options I have. I am 45 and a fighter!,, hoping you can help keep me strong and maybe I can do the same for you. Marie x

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  • Marieb

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Dear Marie


Welcome to the place that nobody wants to be but where you will for sure, find help, support and so much information to help you. You will also find the Support Nurses "priceless". With so much experience and knowledge with PC they will guide you through too.It may be an idea to give them a call on the free phone number and introduce yourself as there are so many things you need to start sorting out with for example "Creons" if they are needed. Love Annette xx

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Hi Marie,


Welcome to the forum, We are always here to talk, and give lots of support, As Annette says the nurses are invaluable with their help and support. Keep posting and let us know how you are doing, take care sandrax

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Welcome Marie. With this cancer it is one step at a time and not to dwell on statistics. So for now, focus on the fact that you may be operable, unless told otherwise. Your fighting spirit will serve you well! Let us know the news when you get it xxx

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Welcome Marie,

You will get lots of support and help here as we all understand what you are going through. Ask questions and don't be afraid to be as honest as you want!

Rob x

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Hello Marie

Sorry to read of your diagnosis.

As others have said, this forum provides invaluable information and support so you're definitely in the right place. Good Luck with your next meeting with the Oncologist. Will be thinking of you. The nurses here are extremely helpful and supportive as well.

Keep strong and positive! X

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Quick question, I am told that my Cancer is inoperable. This is on the basis of the initial CT where they say it covers 3/4 of my pancreas (avoiding the head), into the blood vessels beside, touching my spleen and affecting one of my adrenal glands. They thought it was in my stomach but the endoscopy was unable to get a biopsy. I am awaiting another more technical endoscopy that will use an ultra sound camera to guide a needle from the stomach to the pancreas. Is the CT scan usually right ie inoperable or is there any hope that they find they can operate once the new exam is done?

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Hi Marie,

This is a great forum where you will receive great support. There are many knowledgeable people on here who may be able to help with information. I am sorry to hear about your diagnosis but happy to hear you are a fighter. My Mum has been positive and determined on this whole journey and I am convinced it has helped her.

I think the CT scans give good indication if the tumour is operable or not. Chemo can sometimes shrink it! Have you been offered chemo?

Let us know how you get on with the technical endoscopy.

Take care and remain positive. Love Sue x

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Good morning Marie. The fact that it has been deemed inoperable is probably more to do with the blood vessel involvement rather than anything else. My bf had tail of his pancreas taken away, his spleen and half his stomach (because tumour was stuck to both) and one adrenal gland. They can also remove the whole pancreas so none of the rest of what you describe would preclude it being operable. Chemo can sometimes shrink it away from the blood vessels so it can become operable and as you appear to be young and fit I would think that you would withstand the chemo well - folfirinox, if that is what you are offered can sometimes bring spectacular results. Good luck and keep us posted! Didge x

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Got the date through for my next Endoscopy, it's 13th July. Pain is now stabilising well due to the wonder of these patches, also using Creone with meals and therefore feeling much more comfortable and ready for the fight of my life....get ready PC...I am going to kick ass!!!

Thanks everyone (and Chris who replied direct by email) for your advice and support so far.

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Just a wee blog for myself...a means of releasing some tension! Sitting here tonight and I feeling very sore. the wait for the Biopsy is getting to me. I just want a definitive diagnosis and to get on with whatever treatment I can get. Why does it all take so long? I keep telling myself to enjoy this time where I am actually feeling a bit better (thanks to the morphine) and I feel strangely detached from it all. Since originally being diagnosed I have been inundated with offers of support from friends and family...I am truly blessed to have such a supportive network around me. Life feels surreal, those kids voices I can hear through the window can't possibly belong to my little ones...so care free...I wish it could stay that way. I will beat the odds! I have to!

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Oh Marieb

Be strong ,be positive , my hubby & I had a mantra when he was diagnosed Live for today as tomorrow never comes because if it did it would be yesterday ..... And for today we are the same as everyone else as there is no tomorrow !!

EmmaR x

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Thank you Emma. It's all so new and scary but you are right. When I live in the moment I feel so blessed, the world looks so different to me now. every day is so precious and I feel really strong when I focus on the here and now. I know I am a strong character, I am a fighter and if anyone can prove to be an exception to the rule it will be me...through sheer stubbornness and tenacity. I think I need to learn quickly to not obsess over the future, it's not in my control.

Thank you for responding, knowing others are on here who know how I feel feels like a life line. Today the sun is shining and I have a family to love and enjoy. Marie x

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Marie, just to let you know I am thinking of you. Living in the moment is the key but it certainly is hard sometimes. The waiting is awful so I hope you manage to take your mind off things next week as best you can and hopefully get answers very soon after. I am glad the suns is shining - it's not here! x

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Thanks Didge. I love the fact that even though you are all dealing with your own personal nightmares that you take the time to offer support to others. My husband and children are keeping me sane, it's hard to believe sometimes that we are dealing with something so massive as there is a lot of love and laughter which helps to distract from it all. Take care all of you and keep strong. X

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Marie, when my husband was diagnosed in March all I could think of was the wonderful life that we had lost. We did everything together like dancing, walking etc but now i'my just grateful for every day we have together. It' so about the only thing that keeps me sane and I just pray that he will respond to treatment, but I think living for the moment is so important. Enjoy your day.


Sue

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You are amazing, and your children will give you the strength and fight to kick this cancers butt with everything you have. Enjoy every moment, nobody knows when there last is. You are an.inspiration and use this forum to vent if you need to everyone has some idea of the fight.x

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Quick update - I had asked to be put on the cancellation list for my EUS and got a call this morning to say I now have an appointment for this Wednesday. Fantastic news but also scary as obviously it means that knowing exactly what I am dealing with is now very near, no hiding from the truth at that point. Its a 2 hour drive to get there so my lovely sisters have booked an apartment and we are going up tomorrow for a day in the city, followed by a girly night in. So lovely of them to turn something scary into an opportunity for some fun. Fingers crossed it all goes smoothly, I will let you all know how it went. Sleep well everyone, for tomorrow is another day x

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Good luck tomorrow I hope it goes well. The girly night sounds great what lovely sisters you have. Stay strong and stay positive.

Sue x

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Hi all , update on my Endoscopy yesterday. After all the build up am afraid it was not successful. There were not able to take any biopsies so I am afraid it's Back to waiting for another referral for a slightly different procedure. This news caused a fair amount of upset at the time. The reason for the failure to biopsy is that I apparently have a large amount of blood vessels lying between the stomach and pancreas, new ones have grown due to the area being affected by the tumour. This meant that navigating to the pancreas via this is very high risk and the doctor felt that it could result in the vessels being damaged, endangering me in the process. Added to that me becoming distressed towards the end of the procedure, it all became to high risk and the procedure was abandoned. the doctor and the team at the Specialist Centre are already discussing my case and how best they can get this biopsy without causing me harm and hope to be able to update me in next day or two. Hopefully I can get it done ASAP, they have promised that it will be scheduled urgently. So again I wait but I do believe they are acting in my best interest.

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Marie, sorry you did not get answers yesterday. I am confused as to why they need this biopsy. Are they unsure as to whether it is actually in the pancreas? If not, why can't they just start chemo? It is not always possible to get biopsies so often treatment just goes ahead regardless. What is the new procedure going to be or have they not told you yet? X

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Hi Didge, they said at the beginning that it was to confirm the diagnosis (although they are 99% sure it's cancer) and to find out which cancer it is, they said there are 3 different types and only the tissue sample will tell them which one. They said that the treatment options (in terms of which combination of drugs) and prognosis would be dependant on what this tells them.

The local Specialist a Nurse phoned this morning to say that there has been a lot of activity over the last 12 hours with emails flying back and forth. The Specialist Centre (which I was at yesterday) are having a MDT meeting today and this will then be fed into the local MDT meeting tomorrow morning. Hopefully this means they will make a decision on how they get the sample and reorganise quickly. She also said that they have requested that I be sent for an MRI on my liver.

I am trying to stay calm and not read too much into it but it sounds like I am a bit of a mess. I am hopeful to hear their plans on Friday afternoon so for today I plan to switch off from it all. The sun is shining (I live in Scotland so I feel the need to celebrate every time the sun visits :) ) and despite yesterday I feel good and have some energy so I am off out for picnic with the kids and to take my dog for a swim in the river.

If you do have any views on any of this, please do feel free to express them....knowledge is power..I will be checking in again later. Marie x

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OK well the questions I would ask are which different drugs would be used for possible types. I wonder if they are considering if it might a neuroendocrine tumour instead of adenocarcinoma and I am not sure if that has different chemo. Most people have adenocarcinoma and the drugs are: gemcitabine plus abraxane as a first line treatment, or gemcitabine alone or with capecitabine or the rolls Royce of treatment drugs, folfirinox which is a combination of 3 drugs and sometimes has one or other of them dropped from the mix. It may be worth speaking to the nurses on this site who can advise further! Enjoy your sunny day! X

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