Hi
although I'm new to the forum, unfortunately I'm not new to cancer. I had a difficult time in 2016, when I had major abdominal surgery to remove large polyps from my intestines. A couple of months later I was called for my first routine mammogram and was subsequently diagnosed with high grade DCIS in my right breast (managed through mastectomy) and small area of low grade in my left side (removed surgically at the same time). Genetic testing then showed me to have a rare condition called Peutz Jeghers Syndrome, which caused the polyps and leads to increased risk of multiple cancers. It took me quite a while to come to terms with this, and I have to have regular scopes and checks.
After a spell of feeling very poorly in early May I was admitted to hospital with jaundice - tests showed what is felt by the MDT to be cancer of the distal bile duct, with possible lymph node involvement of in the para aortic region. I was scheduled for follow up tests to confirm diagnosis and possible spread as a top priority, although only had these last week and still don't have a date for a follow up meeting with the consultant. Whatever the outcome, I've been told to expect a long hard road ahead.
Its really hard living in limbo, trying to hold every possibility from the doctors could have made a mistake and the problem with the bile duct is benign, to there is cancer, it has spread to multiple areas, and there's nothing that can be done about it. And all that is made even harder by being told I would be seen for tests within 1-2 weeks at most, when it has taken nearer 4 weeks instead. At the moment, I can't even think about the impact of treatment - I've been told at least 6 months of chemo, and surgery if I'm lucky in terms of the diagnosis.
Help!
Liz
Hi Liz sorry that you are finding the going tough at the moment. Yes the waiting for answers and plans is hard.
I see that you have been on the community before so you know that there are many groups where you can talking with others who are walking the same type of journey will help you navigate this difficult time.
Do have a look through our list of Cancer specific groups and the second list is for our various other Cancer experience groups. Have a look at the lists and find a connection point as this will help you on your journey.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available.
This service provides lots of cancer information, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best ((hugs))
