Had a meeting with my Consultant Surgeon today re. the MRI scan on the lump on my collar bone, which has grown to the size of a hen's egg in the last 5 weeks.
A previous biopsy had confirmed that it was cancerous, so I knew today would not really be about good news. I was certainly correct in that assumption.
My 'lump' goes in to my chest and is vey close to a number of vital vessels. I was advised that I can have surgery to remove it and then the Oncologist will do his bit (I'm assuming more chemo). However, this surgery will not fully remove all of the cancerous tumour and the necessary margin normally removed on top will not be possible due to it's position (junction of collar bone and sternum). Due to it's size I'll possibly need a skin flap from my chest to replace lost tissue and my swallowing could well be affected by the surgery being so close to the nerves involved - and that's if I don't succumb to any catastrophic bleeding whilst on the operating table due to vessel proximity above and possibly below the collar bone if it's gone that far by the time I've had surgery.
The Surgeon was direct and detailed in his analysis and wouldn't commit to producing a recommendation when asked. When my wife asked him for a personal view (i.e. if it was a relative or a loved one of his) he said he considered more surgery as a treatment too far considering the effect on the quality of life in the time I have left (months).
So, I'll get increasingly tired and fade away or eventually have a catastrophic blood vessel episode in the next few months as the tumour grows.
I'm having a second opinion as I feel I should - but I do not expect any change in prognosis.
I am told my tumour could well break through the skin so I would appreciate any insight into wound management/problems.

Im very sorry to read about your latest diagnosis! Im hoping the second opinion will be helpful. It can never hurt to have a second or even third opinion to see what they would come up with for a treatment plan.

When I was diagnosed with my third round of OC, I almost quit before I even bothered to try to eliminate the cancer. Because of the wonderful members of this forum I was convinced not to quit before I gave it a shot. Of course my situation was much different than yours. But even though it was a different situation it shows that even with slim odds there could be a chance to get thru it. Please dont quit if there is a chance to get rid of this awful cancer.

Can the docs put you on chemo to try to shrink the tumor prior to doing a surgery? Is this a recurrence of the same type of cancer, SCC or a new type?

Please continue to post as someone could come up with something helpful. Best wishes!

I'm sorry for the bad news. As Christine mentioned, chemo. I had heard of TPF Induction Chemo, Taxotere, Cisplatin, 5-FU, used midway or after cancer treatment, that may have be the only thing to significantly reduce or eliminate the tumors for additional treatment, surgery afterwards or to continue treatment. I hope you find other answers. I only had 5 days of TPF, and it killed all my tumors in the Tonsil, BOT, Valleculla, two lymph nodes, but it lasts less than a year before cancer returns, so further treatment is needed. Its usually 3 5 day cycles spaced 3 weeks apart. Mine lasted 8 months, but only came back in one lymph, and then had radiation to follow, then other treatments as recurrences continued. Good luck. I hope to see something else.

Forgot to add clinical trials. There are a number of them for recurrent SCCHN, especially with targeted therapies.

This is just a shot in the dark. but what about cyberknife to shrink the tumor, which is highly accurate, followed by chemo therapy, the same with brachytherapy, which can be place by needles for a a few days in the tumor, or as,one dose, or permanent seeds, maybe followed by chemo. You may want to ask or into,it. I had intraoperative, IORT, which is high dose radiation during surgery, but the area was resected before doing it, and then Chemoradiation weeks later. With IORT the rad prongs go directly on the tumor, and vital areas are protected by molded lead shields, and or clamped out of the way. I had a pec flap to get more radiation, protect my carotid artery. Good luck with your 2nd opinion. Not every doctor will tell you different options if the don't do them at their hospital. Mine didn't, and had to look.

Brendan, I am gutted for you and your family.
Paul and Christine have some great suggestions for you. I am of the opinion that in our free health systems , you sometimes have to really fight for treatments. Push hard for yourself. You are worth it.
Tammy

I am with all of the above posters.

If doing nothing means this tumour could result if a poor outcome, and if the surgery and aggressive approach also has the same result, then I would choose the surgery and aggressive treatment. At least then you have a chance.

Look into all the options mentioned. Yes, with the more aggressive treatment you may have some unwanted side effects - but then you - like the rest of us - would deal with them as they come up. Swallowing problems? Not something to even be a consideration at this point - you would work that out (just ask Christine!). You are young - 50 years old.

My advice would be to take a strong stance here - investigate alternatives - look into cyberknife, other radiation forms, chemo and surgery to get this taken care of. I think we all feel better when we are taking action, and I think there are still too many unexplored options for you to make a decision. Be on that phone in the a.m. making NOW appointments with your consultants. Time is of the essence. Tell them you will wait in their waiting rooms for an appointment if necessary!! This is the time when you get to BE PUSHY.

My second round of chemo was unconventional and had a huge number of side effects, but I told them I was too young to just quit and that I wanted to live to see a grandchild (that still hasn't happened - not sure how long I would have to live to see THAT!!), but I clearly told my surgeon and radiation oncologist to look for alternatives. They did, and I am here today.

Good luck. This will not be an easy path, but we are here for you regardless of how you proceed.

Hugs from one of the "Colonies"

Donna

Sorry I don't really have any information to share. Just know you are in my thoughts and prayers! I'm so sorry you are going through all this.

Hi there... totally agree with others here. Firstly, I am sorry you are facing this. Secondly, no treatment equals certain death, treatment there is always a possibility. You need to find a top notch surgeon - like the best of the best - and maybe looking into treatment to shrink the tumor prior to surgery. Hugs and love my friend. And of course prayers too.

Had my second opinion and the surgeon appears confident that he can remove my tumour in spite of it's proximity to blood vessels etc. I'll need another pec flap but he's sure that this can give me a lot more time.
Depending on the results of another scan (any more growth will scupper any surgery), my operation will probably involve the loss of the end of my collar bone and some part of the top of my sternum. This will probably involve future shoulder movement issues so I've a lot to digest.My wife has reservations about this procedure and how it will leave me afterwards - I can fully see her point re. quality of life, but I don't just want to give up before this tumour effectively strangles me.
The possibility of photodynamic therapy was also introduced at this second consultation. This could be in addition to or instead of surgery and is apparently successful in reducing the size of tumours. University College London is the centre of excellence for this in the UK.

Brendan, I am thrilled that you do have an option.
We too have quality of life issues and the shoulder issues were a major for Kris in the first 6 months post his surgery. But, together with intensive physio and gym work these problems have largely been resolved. You do find a way around them and compensate.
Life is very different for us, but we are both so thankful for life. Honestly Kris does enjoy his life.
Without this surgery your outlook is very bleak. If this had been our only option I would have definitely pushed for it. You have hope. The QOL issues will resolve themselves with time.
Thinking of you both,
Tammy

Glad you have an option on the table, and possibly of photodynamic therapy. Fight on!

Brendan, having options is always good!

Of course the quality of life issues should be a part of your consideration. Make certain not to include the fear of the unknown into that mix. You already went thru a major life changing surgery so I strongly feel you can make it thru this next round too.

In your considerations, please hear from someone who lives this everyday. Im speaking as someone who is permanently disfigured. Im not talking about having a scar on the wrist for a free flap, a neck dissection scar or crooked smile either! I am missing half of my jaw and I cant hide my disfigurement with clothing or makeup. Children were afraid of me during my first year before the reconstructive surgeries. But even now people stare. The first year was the hardest! I have many quality of life issues which would make most other people in my situation hide in the house. I am missing all my teeth, will never be able to have dentures. I will depend on a feeding tube for 50-75% of my nutrition for life since Im too stubborn to drink those awful ensures. I have swallowing issues that makes me choke on even yogurt sometimes. Im weak and cant physically lift more than 15 pounds. I also tired very easily, my stamina levels are always low. I could go on and on about whats wrong with me after Ive had OC 3 times within 3 years, but Im sure by now you get the picture.

Now I will tell you about why the above paragraph really doesnt factor into things. I am alive! I help thousands of people. I do not sit around feeling sorry for myself and considering all the things I mentioned above. My life is a very good one even with limitations. Maybe others wouldnt see it that way but Ive always been a very independent, upbeat and positive person so my point of view is that Im very fortunate. Looks are superficial and its what is inside that is important. Looks fade and change with time, mine were taken away from me when my jaw was removed but there isnt anything or anyone in the world who can take away whats inside. Inside, I am still the same person I always was before I got sick.

So instead of thinking about "what if" and thinking of all the life altering changes that "may" happen.... think about what kind of person you are and if you can handle persevering thru this. What I know of you says YES YOU CAN!!!! If I didnt see you as a fighter you wouldnt have gone thru everything you already did. While I do see your wife's concern, the final decision is yours and yours alone. You came this far, please dont quit before you even try to get thru it. Being alive and living with handicaps and disabilities can still give you a very worthwhile life full of happy things.

Best wishes!!!!

Awesome - so glad they've come up with a plan... Ditto what someone above said... Fight on!

Many thanks for all the responses, especially ChristineB - it helps me put things in perspective. Apart from the pain,discomfort,deep anxiety etc that this condition brings I do feel cheated that I won't see and help my 4 year-old daughter grow up or enjoy another 30 years with my wife, when the true cause of my disease cannot be determined.
I know I've got to try and stay positive and this forum has been a true support for that.

Brendan, please dont determine your fate already! Please try to get thru some type of treatment. Dont ever give up before you try!

Several years ago when I was diagnosed with "the big one", Stage IV needing my jaw removed I was ready to refused treatment. Being a single mother, I was all my 2 teenage children had. There father had chose not to be involved with raising them many years ago. I was beside myself not knowing what would be the best decision to make for my children. My mindset was that if I was just going to die anyway, why not prepare my children for it while I was still relatively 'healthy'. The members of the forum convinced me to not give in before I gave it a try. By resigning myself to quit before the race even started I was signing my own death sentence. I asked Brian Hill if he knew of any 3 time survivors as I had never heard of even one. His response was honest and accurate, he said "yes there are some 3 timers out there, not many but there are some." Between that reply and the forum members I decided I would attempt to survive the mandibulectomy. Even though it left me disfigured, with many medical issues I consider myself to be very fortunate. I am alive and mostly well and able to help others. I go all over speaking at schools about anti-tobacco. I volunteer many hours every single day on the forum and give speeches at OCF walks about oral cancer. So you see even with handicaps I lead a very good productive life.

If I can do this.... so can YOU! I am a firm believer in this. I know it will not be easy but nothing that is worthwhile in life is ever easy. It does not matter the reason you got this horrible disease, you still got it. The treatment plan would not be different at all even if you did know. There are many people out there (I think about 10%) who dont know what caused their OC. You think knowing would make things easier, I dont. For me, I know what caused mine...I smoked and it was my own fault that I look like this. I did it to myself with my awful habit. That can play a real guilt trip on a person. I think you are lucky that you dont know.

Ask your doc for pain meds. Seek out a therapist or counselor to help you with the anxiety. You probably should take some anxiety meds to help take the edge off. I probably should have but I was too busy during the 2 months between diagnosis and the surgery date.

After diagnosis, I was preparing to die so I wrote letters to my children (should have made videos but this was 4 years ago), paid up all the bills, I was working so worked lots of overtime to have extra money for my children, and lastly I threw a party and made memories. My son had his 20th birthday 2 days before my surgery. I selected the surgery date and told both of my children we were going to have one heck of a party and we did. I made certain to spend all the 2 months making memories with my children, they never saw me sad or upset, they saw me happy and we had a great time. I figured if I was going to die they would already remember their mother as a happy strong person. I was even making jokes with my son while I was being prepped for the surgery. I was wheeled away smiling, as soon as my bed left the room where my son was I burst into tears and cried all the way to the OR. The rest is history. Its 4 years later and Im doing as well as I possibly can.

Im begging you to consider all the options and treatment plans and choose the one that gives you the best chance to eliminate the cancer. I know how hard this decision is but you can do it. I will help you thru every step of this if you need me to.

Best wishes!

You are a true inspiration Christine and I hope Brendan that her passion and sincerity has at least given you some hope in taking on the beast head-on and giving it all you got.

I also have to say mind set plays an important role in healing, recovery and fighting this disease if you allow it to defeat your outlook, it's already won half the battle! Live day to day - look towards a future - and let your mind and body know you WANT to be there - also look into photodynamic therapy - someone on Facebook mentioned it and I read the attached article it has great potential see if your hospital has a clinical trial for it.

I am by no means a radiation expert but has anyone considered IMPT, Intensity Modulated Proton Therapy to attack that tumor? Years back I read a very technical article on IMPT and what I gathered was it was designed to treat hard to reach tumors (like brain) and the beam was delivered like a smart bomb in that it would do no damage going in or out but would conform to the tumor and destroy it without damaging surrounding tissues.

About 10 places in the U.S. has Proton treatment, IMPT, like MD Anderson. Not too many studies, but more hospitals are looking into it or have on order, and seems this may be the future Tx. Thanks David.

Don't know if they have this across the pond but SBRT (stereotactic body radiotherapy) is used here. It is a 3D real-time modeling radiation protocol. This is used as much as laser knife.

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 !