I haven't posted for a while but just got bad news from my ENT and had an appointment with a Plastic Surgeon today. I had two surgeries late last year for a SCC in my left cheek but bounced back from that well. I got back to work fulltime and have just returned from a great vacation visiting my daughter in Canada and then went on a two week cruise to Hawaii. I skied in Canada and snorkelled in Hawaii and apart from eating (I can swallow only thickened liquids and soft foods and use my PEG for two feeds a day)was feeling on top of the world!

I had a checkup with my ENT when I got back and he was concerned about an area in the scar tissue of my left cheek. He took a biopsy and it came back positive for SCC. He now wants to excise a large area inside my cheek (left buccal)and some adjacent teeth and I will be having a free flap taken from my left arm to fill the defect. The Plastic Surgeon indicated that it will be very complex surgery due to my history (lots of scarring from previous surgeries and two lots of radiation have left me with lots of unknowns as far as where and how she will get a good blood supply to the flap). I am booked in to have an MRI with contrast to identify relevant blood vessels and check their viability in my head and neck.

The Plastic Surgeon ran through all sorts of scenarios for the surgery which may not be all intra oral but she seemed to think that there would be a good chance of success with the flap. In ordinary circumstances she said the flaps have about a 5% failure rate but with my history the risk of it failing would rise to 15%. Still good odds. They intend to cover the defect in my arm with a skin graft from my thigh and then they will put it in plaster.

Skin flaps and grafts are all new territory for me. I am scared and frustrated! Never having smoked and having been a light social drinker I still am at a loss as to what, if anything, I can do to stop what seems an endless rollercoater. I seem to have spent the last 4 years having surgeries and treatments,recovering and then just when things get back on an even keel it hits me again. I am so sick of all of this. (Sorry for the vent!)

I would love to hear from people who have had similar surgeries (flaps and grafts) so that I'm mentally prepared for what is to come.

Sue G

Hi Sue,
From memory you are in Melbourne right? It is great to see that you have had some good times recently. I have followed your posts and know that your journey has not been an easy one.
Now you are again embarking on surgery so you have every reason to be sick of it all and want to vent here.
It is after all the best place to come.
As you can see by my signature I have had the surgery you are speaking of as have a lot of others here.
Mine was a while ago now and while I have had a few issues all in all I am doing just fine.
If you have any specific questions please feel free to ask and either I or others here will be able to answer.
Are you being treated at one of the major hospitals in Victoria with a CCC?
I will be looking out for your next post.
Love
Gabriele

Hi Sue,

I have had a flap as well. The skin graph is not too bad. When I had my first one in 06 it was painful but the way they do it now really isn't that bad. I can totally understand the roller coaster of starting to feel better only to have another surgery. Not all mine were because it returned but they were not the most fun either. Glad you found us to be able to vent and get support and information. Also soooo glad that you had a good time on your vacations. Those are so important to help with the roller coaster of it all.

Not sure about your flap but with most flaps the hair that was on your arm will be in your mouth. It's kind of weird but they can take care of it later. Keep positive about the flap and don't worry about the statistics.

Thanks Gabe and Brandy,

I'm getting treated primarily at Peter Mac in Melbourne, where I still see a dietician, speech pathologist and Radiation Oncologist, but for this surgery I'm going to another hospital which has a specialised plastics unit. The Plastic Surgeon is also affiliated with Peter Mac and I'm well and truly in the system there but that is not always the best place for the actual surgeries - in fact only my PEG insertion was done there - everything else has been at other places. My ENT will do the initial excision and then the Plastic Surgeons will take over. They expect the surgery to last about 5 hours.

I think that it has been scheduled for Monday the 28th and I have MRI imaging tommorow and a PET scan next week. After reading other posts here I'm now more nervous that they won't be able to do the surgery than about the surgery itself.

Given I don't have much feeling in my mouth and only half a tongue which is unable to touch my left cheek or gums I don't think that growing hair on my flap will be too much of a problem. I'm very fair and have very little on my arms anyway. The Plastic Surgeon says I will be in hospital for 2 weeks. This seems excessive to me.

Sue G

How did it go with the MRI Sue?
I was in hospital 2 weeks with my oringinal 14 hour surgery..1 week in ICU and 1 week on the ward.
Also fair and had a little hair on the flap but with time it seems to have gone..probably rubbed away.
Gabriele

Hi Gabe,
The MRI was a protracted process which took about an hour and a half. I had contrast injected and there was a fair concentration on my blood vessels, but also said they would be doing a check for suspect nodes and other signs of my cancer. I have dropped the films (for some reason it wasn't put onto a disc)to the Plastic Surgeon today, but haven't seen the report, which was being faxed to her.

My next appointment is on Thursday for a PET scan and then I'm going to a Head and Neck Oncology clinic where I will see my ENT Surgeon and Plastic Surgeon, amongst others, to get the results and run through the proposed surgery (in a bit more detail given they will have the MRI and PET scan results).

When I saw the Plastic Surgeon last week she indicated that my ENT would remove all the suspect/unstable tissue and then she and another Plastic Surgeon would take over. She seemed to think that the ENT would take 1 to 2 hours and then she would take another 4 to 5 hours. It'll be my longest surgery but a short one compared to yours. There was no mention of me being in ICU afterwards but I was told that my Hospital stay may be for 2 weeks.

Thursday for me is D day. I don't normally get stressed but I'm really scared that something unexpected will show up. I'm working up until Wednesday, then I plan to be off work for at least 2 months as a minimum (according to the Plastic Surgeon).

We have another trip planned for the 14th May, this time for 3 weeks to New York, Niagara Falls and Washington, with another couple. I'm hoping that if all goes to plan I will be fit to travel and that I'll be able to catch up with my daughter again.

Sue G

Hi Sue,
The waiting certainly seems to be one of the hardest things after tests.
You seem to be in good hands with your specialists and I wish you all the best for your results and Thursdays appointments. I also hope that nothing unexpected shows up.
What great plans for May and I will keep my fingers crossed that all goes well and you will have a fantastic time.
Gabriele

Hi Sue

I totally empathise with what you are going through. I had a rescetion of my right buccal mucosa in Sept with a free flap from my arm. The operation went really well and I recovered very quickly. Unfortunately, the dreaded SCC came back in my neck after only a few months and I have just undergone another neck dissection, this time a modified radical and have only just got home from hospital.

Next on my cards is rads and chemo..pretty nervous about it all. I am just trying to live day by day and remain optimistic about the future. I have to admit, I was devastated with my reccurence but the pople on OCF and the Perth Head and neck Cancer support group have been wonderful.

I wish you all the very best and please hang in there. So many of us are going through this journey even on opposite ends of the world. Prayers and hugs

Liza

Hi Liza,

I sent you a PM before I read this post - and I missed the fact that you'd already had a neck dissection - so sorry if my PM sounds like I haven't paid attention to what you have been through!

Stay optimistic - radiation and chemo are not too bad. For the first two weeks you will wonder why anyone complains, then the impact gradually builds for the following six weeks until you then start feeling a bit better about two weeks post treatment. I know that no two journeys are the same but I got through radiation and chemo (the first time) with no feeding tube and no residual problems. The second time was a way different story and I hope that you never have to take that path!

I'm happy to speak to you over the next few days but after that I'm told I won't be talking for a while!

Wishing you all the best.

Gabe,
Thanks for your good wishes. What a pity that we're all living so far apart!

Had a meeting with the Tumour Board today and my PET scan and MRI held no bad suprises, other than a broken rib - which was really painful about 2 months ago and my GP thought at the time it was a strained muscle after an ultrasound found nothing. I think he thought I was being a sook!

Anyway I have surgery on Monday, with the ENT going in first, then the maxillofacial surgeon will remove three teeth and shave off some jaw and the the Plastic's Team will do the free flap from my wrist and get a good blood supply to it by various routes and with some blood vessel grafts, also from my wrist and forarm. The Team was great and went into a lot of detail about the surgery and aftereffects. They were very faith inspiring and were happy to dumb down their terminology to give my a good understanding of what is to be done.

I will go into hospital on Sunday night and having the Operation early on Monday morning. I'm told I will be in ICU or the HDU for at least two days and then spend at least a week back on a ward. I'm still feeling nervous, but at least it is going ahead!

Bring on Mondsy!

Sue G

Sug, Ive been following your posts. I admire your bravery and tenacity. Going thru this more than once is horrible, but your saga takes the cake!!! You are very very fortunate that the latest bout has been caught so early!

Ive had the operation you described but it was on a much larger scale, my whole bottom jaw was removed. What you will go thru isnt a walk in the park, it will take you a while to bounce back from this. The part that makes me say you are so lucky is that the doc only has to remove a few teeth and shave some off the jawbone. Its still invasive but not as extreme as the procedure I am used to reading about on here.

Im looking forward to hearing your story of a successful operation! Then no more!!!!! Let the cancer finally be gone forever!!!! You have had more than your share of this awful disease. I wish you all the best!

Hi Sue,
Wishing you all the very best of luck with your surgery on Monday. It sound exactly like the one I had (4 teeth removed for me) and definitely not as extensive as Christine�s.
It is fantastic that you have a great team that you have faith in. I went in to my operation with very little understanding of what was going to happen. Maybe that was not a bad thing either..hard to say now!
My operation was in early September, first social occasion end of October, back at work November all be it reduced hours.
You should be fine for your trip in May so keep thinking of that if you get a little down those first days in hospital.
PM me your number if you want me to call and have a chat over the weekend.
Love
Gabriele

Thanks Christine and Gabe,

I had to meet with the Anaesthetist this morning and he was also quite encouraging and positive about the surgery. I now just want to get it over and put this behind me. I so hope that this will be the last time I have to face such serious surgery and that this damned cancer will cut me a break for a while.

As an aside I was told that I may well temporarily have a NG tube, despite having a PEG already, because they use that to drain out mucous. Not sure how that works but I guess I'll find out. I'll still be having all my feeds through the PEG.

I also get an extra night at home. I now don't have to be at the hospital till 7am Monday. Yey! I'm heading off shortly with two girlfriends for a day and a half of pampering at a Day Spa and resort and will then be spending Sunday with family and friends before the big day. I won't have too much time for stressing thankfully. At the moment I'm content and in a good place.

Thanks to you and everyone else at OCF for your ongoing support. You probably know how much it helps communicating with others who have been where you're going and really understand the frustrations and trials that we face. Sometimes, even when I'm not posting, I find reassurance in reading that others have overcome worse than me and are still living meaningful and fulfilling lives.

With Love and Thanks

Sue G

Sue

Best wishes for a successful surgery on Monday. I hope everything goes well, and recovery is quick.

Take care

Karen

You have been through this too many times. You courage and positive atitude encourages me. Will be praying for you.

Sue, just sending warm wishes your way for your upcoming treatment and recovery.

Sue, I wish you all the luck and success with your surgery on Monday. I did ring you on Saturday but I guess you were off at the spa resort getting pampered!! I pray that you recover and heal quickly...and as Christine said ' no more cancer'!! Take care and I will keep on checking for updates from you. Be strong and keep the faith.

Love, hugs and prayers

Liza xx

Thanks for the good wishes from everyone. Family and friends, along with those here at OCF, have been providing me with great support and encouragement and I'm not going to let this ruin even one minute of my time before surgery. I may have a day or two of feeling a bit sorry for myself when I wake up post surgery, but I'm sure I won't be allowed to laugh anyway! I got your message Liza but I was out with friends so I couldn't return your call. Thanks again everyone.

Sue

I'm back at home after my freeflap surgery. Spent 4 days in ICU, with no trachy, being ventilated via my nose. Didn't enjoy the ventilator or having it removed! But it did the job and no trachy was required. Was moved to the Plastic Surgery ward on Thursday last week and gradually started taking on human form from then on. My flap is healthy and my arm looks grotesque but they say it is healing well. I won't see my thigh until Wednesday.

It is so good to be back at home in my own bed! I hope that this was my last hospital visit for a while. Everytime that I think I have this thing beat some new twist in the tale appears.

Found out that I have an OCF member living literally around the corner (Hi Jenna!) how small a world is this?

Glad you are back home. Pray you have no more problems in 2011 or ever.

Sue, wishing you a speedy recovery. Small world isnt it! So glad you have a OCF friend nearby! Hope this is the last time you have to go thru any procedures.

Hi Sue,
It is great that you are home now for the final recovery stage.
Sounds like you are progressing really well and I hope you really do have it beat this time.
When I mentioned a Sue in Victoria to Jeanna I did not envisage that you lived just around the corner. As you say it�s a small world.
While I work for the same company as one of our OCF caregivers (klo) we usually only manage a cup of coffee now and again. It was nice to have lunch with her yesterday and you can guess the main topic of conversion
I really do not want to see you post round 8, op 15 � OK!!
Love
Gabriele

Thanks Gabe and Christine,

I hope that I won't have to have any more Operations either. I have had enough! I still haven't met Jeanna as I'm housebound and her husband has been ill, but hopefully we'll get together soon. Thank you for mentioning me to her as I doubt we would have ever known we were so close otherwise. I still can't believe that we live so close together. It would take me no more than 5 minutes to walk to her house and that would be walking slowly!

I go to a Plastic Surgery clinic tomorrow to have my graft and various wounds checked, and then to see the ENT and Speech Therapist on Thursday. I think I'm doing really well and hopefully they will confirm it. We have a trip planned for mid May so hopefully I will be talking and well healed by then. I'm almost compulsive now about having something to look forward to and to aim for.

Thanks for your ongoing support.

Sue G