Last week my mum was diagnosed with a NET in her pancreas, it is 6cm in diameter and amazingly she has had no symptoms so far and is a fit and well nearly 68 year old (her consultant was surprised at how well she is bearing in mind the size of the tumour!). The NET was only identified during abdominal scans carried out as part of investigations for myeloma, which she was also diagnosed with at the end of 2019. She saw a NET specialist as well as a surgeon at kings college hospital on Thursday, treatment options are controlling the NET with hormone injections or a whipples procedure. She also needs to start myeloma treatment soon as although low grade at the moment she requires chemo and stem cell treatment - but there are question marks over how wiping out her immune system during SCT will affect the growth of the NET (if she goes down the hormone route for this) we are awaiting further info from her NET consultant once he’s spoken to her myeloma dr, her NET dr has concerns that with no immune system the NET will grow/spread more aggressively. The whipples procedure was explained in some detail during her appointment with the surgeon along with risks and potential side effects, I think the having the seriousness of the op outlined has really frightened her and she has almost ruled it out without considering it rationally. Sorry for the long post but it’s not a straightforward situation as there are so many variables to think about, I’d like to hear from anyone who’s had a successful whipples procedure so I can at least pass on some positive stories to help her come to a balanced decision, especially as I personally feel this would be her best option when weighing up the management of her 2 cancers medium to long term.
Dear
i had to read your post through a couple of times to get a handle on everything that is happening to your mum and it’s obvious that this a highly complex situation that needs careful handling especially from a phycological point of view. As someone who has experience of induction treatment in myeloma I can say that although it is hard in the body it is doable. Stem cell transplant are a challenge but deliver good results, you can get more information from
https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/
As for the whipple procedure as I’m sure you are already aware it is a big operation and members of the pancreatic cancer group are best place to give you real life experiences of how to manage it post operatively.
your mum is going to need a good support network around her as she has some very big treatment decisions to make, as someone who also has more than one serious condition it’s important to make sure the various consultants involved are communicating properly with each other and with you, as your mums general practitioner will be copied in on all correspondence it’s a good idea to speak to him /her to get a over view of what is happening.
i wish you and your family all the very best as you embark on what will be a challenging journey and would encourage you to use the forum as a sounding board for any problems that arise.
Hello jane
thank you so much for replying to my post. I have taken your advice and posted on the pancreatic cancer board and have already had a response.
Best wishes
Sarah
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