Hi there
I’m new here! I did used to belong to the pituitary foundation forum but it seems to have been inactive for a few years so hoping I can find help and support here (and offer some to others if needed!)
I was diagnosed with Acromegaly in my early 20s and had two lots of surgery but have had residual tumour plus symptoms since. Now in my early 40s they’ve realised tumour has been steadily growing (explains why the drugs aren’t really helping) and that I’m still quite symptomatic.
I’ve a new endocrinologist who is amazing, especially as my previous one dismissed a lot of my symptoms and didn’t notice the growth (don’t get me started on his approach!).
I’m now in the process of awaiting more surgery which may be in next few months. I’m strangely much more scared of the surgery this time round, not least because the risks are higher due to them having to navigate scar tissue from previous surgery. But I don’t feel I can share these anxieties with my family as they’re already scared enough so I’m trying to be the brave one!! So hoping there may be some people on here who I can share these worries with.
I also have various symptoms which I find hugely embarrassing which again I’m hoping for some support with as I feel quite alone and emotional!
Anyway, thanks for letting me join!
Hi Acromegaly Patient and a warm welcome to the Online Community but so sorry to hear about your diagnoses and read about your journey so far.
The cancer journey can be such a stressful and challenging time but you have done the right thing in reaching out to a place where you can ask questions and getting support from others who are on the ‘exact’ same cancer journey.
The Community is divided into support groups (discussion rooms) and I do see that you have already joined our supportive Pituitary tumour support group. This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
If you'd like to connect in with a group click on the (Bold) Group Text Link I have created above then once the group page opens you can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go.
You could copy and paste the text from this post into your new post.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.
I also see that you have posted on our Ask an Expert section but do allow a few working days for a reply.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Do get back to me if you need further help.
