head and neck cancer

[mariannefaithfu]

Has anybody out there had experience of any sort with head and neck cancers?

[SILLY]

It's hard to reply to this as you didn't say what went wrong . I hope things are better now.

[mariannefaithfu]

Mum went in to have surgery on her oral cavity to remove a tumor and when the surgeons "opened her up" they got a little surprise.....the tumor was bigger than they thought! It had invaded the mandible! They did not do any medical imaging whatsoever prior to surgery! They went in blind! Second opinion surgeon agreed that this was wrong! Then to cut a long story short.....she was to have a mandibulectomy but had to wait and wait............cancer became more aggressive due to it being disrupted by surgery (cancer does not like being disturbed by surgery or by being irradiated...it de-differentiates and becomes more aggressive) By the time surgery date is planned......2.5 months post first op.....tumor is inoperable............palliate!!!!

[SILLY]

I am so sorry to read about your mum's experience. I have no experience with where this occurred but had the impression from somewhere that it is a top cancer treatment place. It is surprising that no MRI was done beforehand or some other testing. What kind of cancer is it that surgery and radiation makes it more aggressive?If it is at the stage where treatment and /or care is palliative ,does that mean it was fairly advanced even before surgery took place? This must have been devastating for your mum. And for you.

[mariannefaithfu]

We kept on being told that mum had verrucous carcinoma and not to worry as it is slow growing and Not aggressive! What a load of rubbish that turned out to be!!!!!When the first surgery took place it was localised to the mouth with 3mm bony erosion of mandible. T3N0M0!that was the end of November! By Feb.....Palliate!!! No hurry for surgery said the surgeons....its a slow growing tumor!!!!

[SILLY]

I looked up what you said the cancer was and it also said it is slow growing and not aggressive. It also said that surgery followed by radiation is best ,but radiation can effect quality of life. It looks as though your mum's case is unusual. Was there a delay before surgery? Did it recur after surgery? I have a rare head and neck cancer ,adenoid cystic carcinoma. It is usually slow growing . It was 2 months between diagnosis and final surgery .This was because of PET /ct scan ,further biopsies of suspicious areas and debate of aspects of surgery. I am ok 2 years later . With my cancer there are some cases where it can be very aggressive. It can be slow ,then speed up. Still usually slow . I am sorry about your situation.

[mariannefaithfu]

Hi, I hope you are well. Regarding previous entry, mum was diagnosed with cancer 29 November 2011, after the first op. Palliated 8 March while waiting for sugery!

[SILLY]

I am so sorry that this happened this way. No wonder you were shocked and devastated. Your mum must feel that way and she must be experiencing a whole range of different emotions as well. No doubt you will be a big support for her. I realise you are in need of support too and this site will be some help.

[lynnibear07]

Hi, i am so sorry that the drs have let you and your family down. On 26 aug 2011 i discovered a lump on my neck at the front, first word "cancer" sprung into our mind. we were away for the weekend and so we decided to try and not stress as i couldn't see my gp till the sunday night. on going to see her she metnioned something to do with the thyroid, so off i went for a ultrasound to discover a 5cm multinodular goitre pressing on my trachea.(this making it feel like i was being choked 24/7). i was sent for blood tests which came back clear,and a radioactive xray to check for thyroid being active or not active, which it was not. I was then reffered to a specialist, and while waiting for an appointment i was told i could be waiting a while and that i i was sick to go to the ed. i told the recepionist i would not be doing that as i was not sick, just couldn't breath very well. I wrote a letter to head of endocrinology department of the hospital i was reffered to and i had an appointment within the week :-) he then sent me straight to the endocirne surgeon that afternoon as that was the only way to take the pressure off my trachea, as well as ordering ASAP a fine needle biopsi to check for cancer. I saw the specialist who then straightaway put me straight through to the surgeon, who told me that there would be a 90 day wait due to public health system however she said that if i got worse then i was to ring her back and she would get me back for reassestment. 2 weeks later i was back seeing her and the ear nose throat surgeon and the following week i was in having the surgery done. right side thyroid removed and lump which turned out to be follicular thyroid cancer 😞 this was devestating news as the biopsi came back clear, and i was told that there was a 80% chance of it not being cancer and 20% it could be, but wouldn't know until the lump was taken. This was just before xmas, i then had to have second round of surgery as a precautionary measure to have the rest of my thyroid out, the left side. my lovely surgeon has been really great and told me that we were so lucky i came back to her. I am now on thyroid medication for the rest of my life and am currently waiting on a date for my radioactive iodine treatment which will blast any thyroid cells. anyway my thoughts are with you guys and i hope that you can fight this. take care Lynne xx

[MOJO1014]

Yes, I just finished 35 radiation treatments 4 weeks ago, stage II vocal chord cancer. I understand that once they start treatment, they do not like to stop unless they have to, as the cancer is aware that it is being attacked, and will get more aggressive. So unless it is extremely serious, they will continue to radiate you. Thank God this did not happen in my case. I hope I am cured, but will not know for sure for at least 5 years, in the meantime, I will have checkups and scopes every 6 months to have a look. I went to the doctor for a problem with hoarseness, that I had for 6 months, and found out about this cancer. Never in a million years did I even think of this diagnosis. I have no taste buds, and no saliva right now, and the doctor told me it can take up to a year to restore this, if at all. I cannot tolerate food right now, and I am drinking Ensures to maintain my health. To date, I have lost 30 pounds, and hope that is all. I just want to be able to eat like normal again, and hope this is not the new normal, as it is quite depressing.