What I gathered from the photodynamic therapy article is that they inject you with a substance, this substance is sucked up by the cells as it binds with O2 - then after the cell has metabolized it they hit it with a light source that in combination with the subject kills the cancer cells. It has NO damaging side effects. But is dependent on the location of the tumor - in relation to the ability of the light to reach it. It does make you photosensitive for a bit, but a good sunscreen is a simple solution along with a hat and appropriate dress.
hugs.

Christine, I know I am hijacking but I just have to tell you that each time I hear your story I am so deeply touched in ways I have never experienced. I know you don't do it for praise but I have to tell you that before I met you I drew my strength from those we lost to this horrible disease. Your passion, your fight, your perseverance just gives me the courage and strength to keep battling no matter what! Thank you for all you do and who you are.

You see, Brendan? - You have lots of wonderful, knowledgeable and compassionate people in your corner. You CAN do this!

Dear Brendan,

I am so sorry that you are facing such difficult treatment decisions and weighing quality of life issues.

As a physical therapist, I may be able to offer some insight as to what it would be like to have sternal (proximal) end of your clavicle resected. The good news would be that the sternal end would only be partially resected, offering some proximal support. Basically, the clavicle prevents your shoulder complex from collapsing into your chest area. Your scapula (shoulder blade) and rotator cuff muscles (control shoulder stability/movement) are much more important when it comes to providing proximal stability so you may elevate your arm. However, some slight joint movement must occur at the area of your resection in order to fully elevate your arm in a pain-free fashion.

You may need to wear some kind of sling for a bit, followed by physical therapy when appropriate in relation to your other treatments. There are also soft braces that can be worn that will help hold your shoulder blades back and support your upper/middle back region.

In summary, I don't think you will lose too much shoulder function. I even asked one of my colleague's opinions about this and we both agreed. It seems to me that the benefits of surgery and other treatments outweigh the risks of some loss of shoulder function.

Best wishes to you and your family as you move along this road no one wants to travel. May you get to the other side and have some smoother travels soon.

xo,
Kerri

I believe that we all have the right to make the decision of when we have had enough treatment and I often marvel at the strength of people here in facing the hardships that treatments cause. But in 2 short posts, Christine, you have helped me understand why it is worth it. I want to echo Uptown's thanks to you, and others here, for your inspiration and hard work in providing the OFC and fighting this horrible disease.

Brendan, my thoughts are with you. It is amazing what the body and mind can cope with. You have a lot to keep fighting for. Sally

Many thanks for all the responses.
I had my second opinion today and this too has confirmed that further surgery is not really feasible. My tumour has spread in a linear fashion along the collar bone (on both sides) in the last 2 weeks and it has broken through the skin and begun to weep.Further surgery will not remove it all and the drastic nature of any such surgery will give me a number of issues/complications re. QOL, considering secondary treatment (chemo & radiotherapy) has been ruled out.
I'm being referred for consideration for Photodynamic therapy next week. This avenue is by no means a certainty, so I may have reached the end of the treatment road already.I knew one day that this would happen, but still it's an odd feeling.

Hugs! And fingers crossed - based on the location and my understanding of PDT it has a great chance of working and the fallout is minimal - I sincerely hope the consider you a candidate - and go ahead with it. Fingers and toes crossed and prayers to you! Hugs !