Should have joined this ages ago. I knew it was going to happen but when I was told 11 months ago it was still a shock. Things seem to be going ok so far but there's still lots I need to find out.
Welcome to Cancer Chat. It's good to hear that you feel everything seems to be going ok so far.
Can you tell us a little more about your diagnosis/treatment? It will help to be able to signpost you with some information maybe, and will certainly help you to connect with others who may be in a similar situation in the community.
Also we do have a tema of nurses that you can call to speak to if you feel that might help. They are available Monday to Friday 9am to 5pm on 0808 800 4040 (free to call from a UK landline).
Hi Dave, welcome to the forum. As Jenn said in her response to you, it would be helpful if you could tell us a little more about yourself. I have found this forum to be very supportive and a good place to put in writing what I'm feeling, especially when I get bad news, or I'm facing yet another challenge. People are more apt. to respond if we know more about what you are dealing with and how best to respond to your post. I know it can be difficult to write down what's going on because then it becomes so much more real, but it does help to get it out there.
Whenever you feel up to it, post again, even if you're not ready to share any details about your disease. We still like to hear how people are doing as they take this journey.
I look forward to hearing from you again. In the meantime, take care of yourself.
Hi Lorraine and Jenn, thank you for your replies, I didn't know just how far to go with it being the first post. Here's the details of my condition & treatment.
5.5 years ago I had to have a circumsicion at Countess of Chester Hospital, they originally diagnosed Lichensclerosus (hope I spelled that correctly). There was a patch underneath that they were concerned about and they they kept a check on for the next 4.5 years or so. Different creams, 6 monthly checkups, biopsies, initially every year - 18 months but they did 3 in the final year before my diagnosis. I was told by the dermatologist shortly after my circumcision that there was a chance it may become malignant in the future but the specialist was unable to say when at the time. Just over 18 months ago when the checkups and biopsies started getting closer together I knew what was close on the horizon. The final biopsy in Dec. 2013 at COCH showed up some concern (but still no firm diagnosis). The sample was sent to a pannel of urologists at Wirral University Trust for further diagnosis. March 2014 I received an appointment to see a specialist at Clatterbridge for May and was told what procedure was going to be carried out - a Glansectomy in 5 dys time at The Christie. This went well and in June I went for an ultrasound to check the lymph nodes around the area. There was some concern so i was told that I'd receive an appointment in 2-3 months for a Sentinel Node Biopsy. This was done September last year and the results were negative but the specialist found a lump in my groin when he checked the area. I had an appointment for a Fine Needle Aspiration a few weeks later but when they did the ultrasound they said it was nothing serious as it would have shown up on the ultrasound so they didn't do the FNA. I went for another routine checkup 2 weeks ago with the specialist who I was referred to for the FNA and he has now passed me back to the specialist who did the Glansectomy at Clatterbridge. The lump is still there in my groin but has not grown any larger but I'm still concerned about it. I never even noticed it before it was pointed out to me but now it's obvious. I haven't mentioned my thoughts and feelings on this because I genuinely am unable (and have always been unable) to open up about things like that. I'll try and put something together to explain how I feel about it all. I'd just like to know what is likely to happen next like will they do anymore scans / biopsies etc. I'm aware this is nowhere near the end of it all.
Have just caught up with your thread and though I do not have any medical knowledge as regards your situation just wanted to add my welcome to the forum. Sometimes its easier to write knowing that you are not emotionally linked (anonymous) to those we talk to. I am sure that now you have explained some of your journey (it must have seemed a long few years being unable to share your feelings) you will have others coming along to share experiences and offer support. I wish you well. Regards Jules54
Hi Jules54.
Thank you for your reply. Yeah it was a long few years especially as all this cost me a relationship (my fault, again, not being able to open up about things) during that time. Maybe I pushed her away because deep down I knew what was going to happen? I don't know. This may sound strange but I felt relieved in a way when I got the diagnosis last May, I found the worst times were waiting for test results. I always had lots of questions to ask but unfortunately, only thought of them after the appointment and during my treatment last year because I was seeing different people each time it was difficult to ask at the next appointment.
Like Jenn said ,don't be afraid to let us know what is bothering you,no matter how small,we have been there or are there now,I have had.bowel and liver cancer,now in lymph nodes,I'm no.spring chicken at nearly 70.,so no matter age or problems,you'll get help or advice .
Hi Dave, Just a suggestion... Take a notepad and pen with you to visits. You can jot down info given to you and questions you want to ask. I still refer to pad for info noted down last year. I guess I used it as a diary in a way. Best wishes Kathy
It must have been hard for both of you when the relationship ended and waiting for results is a very anxious time which I know lots of those who post here will relate to. It affects all those around you. In my case it was my husband who had the cancer but awaiting results and dealing with the outcome of treatment was always stressful. I joined the forum because hubby preferred to keep things close to his chest and I needed to talk things through to help me cope. As for remembering what we needed to know at appointments, after the first time I used to write things down beforehand (as and when I thought of something) as both our memories would be pretty mushy on the day (even wrote down answers to refer to later). I hope it will not be too long before you have some idea of what will be happening next and you can always post in Ask the Nurses section of the forum (or ring them on the number provided by Moderator Jenn) as they will be able to offer more guidance on where to find out information if they cannot answer you directly. Take care Jules
