Dear M-L. You made me laugh out loud about "the something might have been broken" thought. So typical of Moms! My hope for you is that you can find something to laugh about every day with your children- that will keep you focused and sane.[I know that to be true because my grand daughter came to live with us at 16 mos of age and just got to go home at 29 months. I have also had a now 15 yr. old in the house. This has been during John's sickest time. There were times when I did not know what I was doing for whom- but there have been ample opportunities for laughter and appreciation of life. I know how tired you are gonna be-wish we could be there to help- let your kids comfort you and David too- with their love and concern. And try to laugh with them. I wish you much strenght. Amy

An update from the meeting with the ENT!

we meet his registrar( I think in the US they are called "resident") on Wednesday. The good news is that there is no distant metastatsis. The CT has shown 2 nodes involved 8mm and 3mm and they are not attached to the jugular. David is due for a Pet scan in OZ on the 31st October. We will take it from there. I am grateful for every moment I have my david my me and our sweet kiddies.

Since then, I have been stangely been in an euphoric space, beeing sure we would be told to go home, meeting our sollicitor and make sure papers were in order. It appears that David will have to go through it all over again on his left side this time. Back in February, he was told by the RT that in 20 % of case, there might have been some transfer form one side to another. David had decided to take his chances. It now appears that what append. I will no add anymore comment here but I am somehow a bit cross at David (although I adore him). There is so much you can say to a stubborn man!! sorry guys !!! but I wil let a few days goes and I might put my foot down this time!!! We'll see how reasonable David will be!!??

I might shock some of you (not intentional) and no I am not on drugs!!!! but I need to say that I have decided that I do believe in the concept of "time" which at the end of the day makes all the different when we really think about it
(anyway it does for me). This is really what we live for with all is pros and cons. I was never really a fan of God although beeing raised a pure-hard-French-Canadian-catholic but since last year what "time" has made go through is amazing. Now I don't wan to start another debate like the "PEG issue" !!!

heaps of love, marie-lyne

Hi all,

here are the latest news. The ct-scan had shown some dark area of 3mm below the node but could not confirmed that it was a second node. The PET scan in OZ has shown that there is only one which is 8mm. Our RT told us that in some cases it happens that is they are close, the PET scan will not differenciate 1 or 2. The PET scan has not shown any activities at the primary site and has not shown any other tumour. As a result, they are speculating that the node was there in December 2005 and wasn't seen on the PET scan as it was microspic.
The next step is for David to have a salvage radical neck dissection. it appears that the node is not attached to the jugular vein and we cross our fingers that it will be possible to safe it. After the results of the histology, the options of further treatments are:
1. no rt
2. low dose of RT+chemo
3. full rt

I am concerned that there is a secondary that can't be located and that they will do the neck dissection and leave the secondary there with nothing to "filtered" the cancer cells. I understand that they want to save the salivary glands left but isn't playing with russian roulette. I also undertsand that is our 2nd strike and that if it comes back, we will have no further options in terms of treatment. Both Rt and the ENT made it quite clear.

Any thoughts on this matter??? I am just a wee bit confused although I undertsand that there are many factors to consider when treating.

Love,ml

Geez, Mi-tough choices! Have the ENT and RT made any concrete suggestions as to what they would do if they were in David's shoes? I would be asking a bunch of questions and researching here for how people deal with loss of salivary function. Since we are fighting a recurrence, I understand your anxiety completely. Is there a possibility of other medical opinions from Head and Neck specialists? Amy

An update,

the radiographers in NZ are on a 10 day strike. The hospital went topsy-turvy with the theater rooms and all surgeons had their allocated surgical schedule messed up. As a result our ENT called last Thursday and said to David:" I'm cancelling my clinic next Wednesday and you're in". David who is in the heart of the end of university semester with students presenting their assignments, marking, internships etc... told the ENT "I can't do it, I have too much work" The ENT told him: "if you don't come in next week, I can't garantee the neck dissection will happen before X-mas". David was actually trying to get himself out it, he's soooo sneaky!!
I had to put my foot down and try diplomacy as much as I can and make him realised that he had to go, he couldn't wait. There is never a good time to have cancer!!

He finally came to terms with the surgery. We had many chats over the weekend. I realised how much he is scared this time. One thing that is good is that he can verbalise it. He is not confident. I think that it is also because he is emotionally and physically so drained from the first experience. It was only 6 months ago.

I am scared. I find this reoccurence almost worst then the first diagnosis and I am not sure why. I find it sooooooooo difficult to see David scared and insecure. His emotional and physical suffering is just killing me. He feels guilty to make me and the kids go through this....again. I am lacking words. As much as I tell him: "I could have had cancer myself, maybe I will!!", "No one is to blame", "guilt is something he should chase from his mind", " we got married for the best and the worst", it doesn't appear to be easing his guilt.

The surgery is in 48h. He is at work today and will probably be home around midnight. He is going to work tomorrow morning and will then drive himself to the hospital for his admission at 2pm. I will pick-up the kids from school at 3. Hopefully David will be able to come home to spend the night with us and we will go together at the hospital on Wednesday morning. I have dispatched all the kids at friends for the next few days as we have no family in NZ. I cross my fingers that all will go smoothly.

I HATE CANCER with all my body and soul.

love, Marie-Lyne

Dear M-L, You are right on- the recurrence is more frightening than the original diagnosis. I think that is because the 1st time we feel that this disease can most certainly be beat. If it comes back within a short period of time, it shakes us to the core. It's like fighting a big fire and putting a section out- only to see it spring to life in another area. I wish you and David the best luck with this surgery. You've got stay strong for your kids and David. Amy

Hi all, we have now the report of the histology the recurrence. We are still in disbelief. When you think that things are bad, well, believe me they can get worst!

They took 48 nodes out. The pathology report confirmed that 1/48 is infiltated with SCC and is extracapsulated so David will need RT and possibly chemo. The shock was that at level 3 of the neck, they have found 1 node positive with microscopic papillary carcinoma of the thyroid which confirms that David has a totally seperate 2nd cancer. I don't know how much can David take?

ENT team has reviewed the ct-scan and they can't locate nothing abnormal at the thyroid. They will review the PET-ct scan films today as a team onco, radio, RT, ENT and endocrinology and see what will happen.

David a thyroid function done in April, it was normal. I have just been searching research papers on the NET and found that even with a thyroid cancer, the thyroid function blood test can be in the normal range.

We are thinking of seeking a second opinion because this is now becoming quite complicated and let's face it rather unusual.
Can someone tell me what would be the best place either in the USA, Canada or Australia for this? I am just on the auto-pilot right now and need to try to focus in finding the best possible place to go for a second opinion and i thought that perhaps someone on the forum could help. I feel i am just shooting in the dark with the NET. Or perhaps has anyone have suggestions? Or again, has this happen to you or someone you know?

I don't know how I am going to tell this to the children? I don't even know if I should tell them? I just don't know anymore. When is it going to end?

I am so sory to be so needy but I can't see the horizon anymore, everything is just so blurry.

marie-lyne

This is really unusual, and the first time I have heard of it. Thyroid cancers do not happen in the same manner or for the same reasons that oral cancers like SCC occur. Thyroid cancer is an endocrine system cancer, not an oral cancer, and of the cancers that occur with orals in the neck, laryngeal is the most common and happens for the same reasons as oral. I would want to know that they are absolutely sure of what they have. Many of us, me included, have thyroid nodules that show up on scans. No one has ever suggested to me that these are malignancies and they have remained as they are for over 7 years now.

Of the good news, thyroid related cancers tend to stay localized and even if they involve the thyroid itself, removal of the thyroid is a relatively simple procedure meaning that for the rest of a patient

Thanks Brian for your quick feedback.

Indeed we are dealing with something totally unrelated to the SCC of the BOT and unsual. My husband is having 2 cancers at the same time and in the same region. No one has seen anything suspicious at any of the scans. It is only from the 2nd radical modified neck dissection's histology that the pathologist has discovered the microscopic papillary carcinoma. No swollen glands just heaps of scar tissues where the RT took place have shown at the scans. It is also too early in the process to be related to RT as we are just 6 months down the track.

Thank you for the advice about re-reading the slides, I will ask the ENT if it possible to send the slides to the guys in Aussie or somewhere else to double check the disgnosis.

Thyroid cancer is indeed quite curable and the pronostic is generally very good but the it becomes is a bit more sinister when some risk factors are involved. At this point in time, it appears that David has some of them, the first one being "metastatic", then there are others which I have found in some articles.

Only people who have gone throught the surgery, treatment, recovery know how David must feel now with all this news, the prospect of what is coming. He is only 2 weeks out of his 2nd radical neck dissection.

Thanks again Brian,ml