Mouth cancer anyone?

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I was diagnosed with oral cancer in February this year and had a partial maxillectomy, neck dissection and free flap reconstruction. I was advised that the cancer had a good margin and recurrence would be bad luck. Unfortunately I have been unlucky and scan in July showed cancer was now in my lower jaw, sinus cavity, etc. I am in the middle of chemotherapy and weekly infusion of Cetuximab and recent scan shows a reduction in the tumour although I don’t know the percentage of reduction and have another scan in December. My treatment is all palliative and I have been trying to focus on the here and now and have asked not to be told too much about progress of disease, timeframe,etc.
however, I am not sure if I should be seeking more clarity and I am trying to seek out a fellow cancer patient who may have been through similar and could offer some insight and/or advice. I did see clinical team at the royal marsden as I had asked my GP to make referral for second opinion and there was agreement that treatment offered was appropriate. As symptoms are not impacting physically in a significant way currently, although I have Trismus and side effects from chemotherapy, I find it hard to imagine dying.
any feedback would be appreciated

ruthjp over 3 years ago

Hi,

you did not say your age or where in the country you are.

I was diagnosed with acc of the submandibular gland in 2009 and have had 3 surgeries and 2 neck dissections

I have metastases in my lungs and more recently a year ago in my brain. It is a slow growing cancer and I have had plenty of time to come to terms with my diagnosis. You are in early stages and will know a bit more after your scan in December. I think they will base any prognosis on your scans. I found it helps to know as much as possible and research all I can. You may be different and not want all the information. Often there are head and head and neck support groups and head and neck Macmillan nurses that work alongside your oncologist. I have a good relationship with my oncologist and now have phone consultations with him and always one after a scan .

Good luck

Ruth

LinziR over 3 years ago

thanks for your reply. I am 54 and live in Hove. I have had support from McMillan nurse although I appreciate that I had previously decided that I did not want to know specific on timeframe and how the disease would progress. Of course before I started the chemotherapy it was also unclear if this could make a difference and what this may mean.
I do have an online appointment with a psychologist next week which is the initial session and I think that this will be helpful as I do feel as though I will burst at times with worry and anger. Once I have had the follow up scan in December I will ask for a face to face appointment as I have a lot too questions which I feel will be better dealt with face to face.
On this site I am surprised by how positive people are and I can see how they are wanting to be hopeful and helpful to fellow cancer patients. However, I am struggling with maintaining positivity and feeling that chemotherapy my have delayed the inevitable while at the same time I want more time.
It’s all so up and down and when I am alone I know my thoughts and feelings are much more intense and distressing. I need to get to a place of resolution so that my turmoil decreases. Certainly don’t want this emotional and psychological state to persist.

LinziR

ruthjp over 3 years ago in reply to LinziR

I understand you are young and that makes it harder. I am 68 on December 5th.

Hove is a lovely place to live. I live in a village on the outskirts of Bristol.

it is very good you will have a psychologist to talk to you and they can give you techniques you can use to help. Getting out for a walk is good if you are able to do that even walking in the garden is good.

I am thinking of you

live Ruth xx

Ruth

FormerMember over 3 years ago in reply to LinziR

Hi I agree it’s hard to be positive with this disease.I wish I could wake up and it would be a dream.But I know that’s Not going going to happen.I am not going to let it take what time I have left bworrying and missing out.So I have to learn how to live with it. Harder said than done but I have to face it and then enjoy the rest of the day hope this makes sense and helps you.

LinziR over 3 years ago in reply to LinziR

thanks for your message. I feel in a better place since posting. It’s helpful to share my thoughts and to know that there are fellow cancer patients listening and wanting to share their experiences and pass on good wishes, I have 4th cycle of chemo tomorrow so I must try and get to bed at a reasonable hour! Weather report promises a dry weekend and I have plans with friend for walks which I look forward to completing. Take good care and keep safe.

LinziR