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