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Hello, I'm new here too

4 Jan 2014 15:06

Hello everyone. I am in the middle of the waiting game for a diagnosis and trying to stay positive.  I started out with a visit to the doctor as I had a lumpy neck and I was getting some pain which wouldn't go away.  He put me on antibiotics but said he would refer me to the ENT. Hospital phoned the next day, had a cancellation for the day after - Fri 13th. Consultant examined me, ran through a few possibilities including whether I had cats (yes I do) because there is something called cat scratch disease which can cause infection and neck lumps. Very thorough, took 5 x FNA biopses and organised immediate chest x-ray and blood tests, said that he would also organise a CT scan and said he wanted me to stay on antibiotics but would see me in a fortnight. A week later I returned to the GP as the antibiotics had run their course and there was less pain but it had not gone - further antibiotics given. Then contacted by hospital again, could I go in for ultrasound on 24th, and CT scan on 27th before seeing consultant also on 27th. The ultrasound on my neck showed lumps on both sides. The CT scan then had to be rearranged to 31st as there was a fault with the machine. When I went back to the consultant he told me the chest x-ray was ok, but the cytologist had given an opinion on the biopses showing 95% likelihood of cancer cells present. He said the neck glands would not be the main site of the cancer, and now needed to locate the primary site. Also needed to confirm the biopsy results.  So I had a further 6 core biopses on the neck straightaway and he tried to get a mammogram and the CT scan brought forward to that afternoon. It wasn't possible (in any case the CT scan requires fluids to be taken beforehand).  But hats off to the hospital, they phoned me at 8.50am on 30th and booked me in for a mammogram that afternoon.

After the mammogram I was asked to see the radiologist who then did an ultrasound of my breasts, then said she wanted more pictures from mammography so these were done.  She located a problem area in my left breast, and would have liked to have done biopses there and in the armpit. However, this would have had consequences for the clarity of the CT scan so this was ruled out. I had the rearranged CT scan on 31st.  The next step is to await the results of the core biopses done in ENT as these should inform as to where the cancer is spreading from, at this stage it is not conclusive regarding breast cancer.  I should get news next week as the ENT consultant is right on top of this and says he will see me as soon as he has something to discuss.  By the way this is the much maligned NHS, not private, and I have to say they have been fantastic.

I am trying not to jump to conclusions, although the 95% assessment from the FNA's is pretty awful.  I am concentrating on reading about it (much as the gut reaction is to give this all a wide berth) and as a result I am making "lifestyle changes" - basically means eating more green vegetables and making other changes in what I eat, and trying to up the amount of exercise I do daily.  I have also started to take Pomi-T.  I have so many questions but there won't be real answers till those results are in (and even then it might not be the full picture).  I still have a lot to learn and I obviously have it wrong as I didn't think that cancer lumps were initially painful.

Got to head off for my walk while there is a brief break in the rain here, it also helps me.  I want to say good luck to anyone at this stage as it is pretty difficult, my heart goes out to you.  Hopefully some of us will find out that it isn't as bad as it first seemed.

xx

Re: Hello, I'm new here too

4 Jan 2014 17:25 in response to Boatgirl

Hi Boatgirl and welcome,

The waiting is horrible but it sounds as if you are getting excellent service from the NHS. I started off with a private consultations until cancer was diagnosed in a lymph none and then the NHS hunt began for the primary site - once diagnosed then the NHS was the best place to be.

You're right to be wary about internet research - I found that that just gave me more to worry about. Trouble is that I couldn't help myself, it was always 'I'll just look this up' and the that leads to something else, and it's seldom good news......

This site is the place to be - there is always someone in a similar position and the nurses are superb if you ever feel the need to phone them.

Good luck and stay positive.

Simon xx

Re: Hello, I'm new here too

4 Jan 2014 17:27 in response to Boatgirl

Ho Boatgirl,

Welcome to our online community - none of us ever wanted to join it but I find it helps. Waiting for the diagnosis is probably the hardest phase for anyone going through this.

Good to hear that the NHS has come through for you - despite the appalling press we've been getting recently. Some of it is deserved but most of it is politically motivated (as well as living with cancer, I work for the NHS in the much maligned role as a manager).

Best wishes

Dave

Re: Hello, I'm new here too

4 Jan 2014 17:40 in response to Boatgirl

Hi,

Sorry to hear your news. Waiting for further tests and results, having been told that a lump (in my case)/ lumps (in your case) are very likely to be secondary cancer is just the pits, isn't it? You are doing the right thing in staying positive and paying attention to exercise and diet, because whatever treatment you need it will help if you are as healthy as possible before treatment starts.

I had a diagnosis of "unknown primary" in my head and neck, following surgery which confirmed that the lump in my neck was indeed a secondary cancer - they removed this lump and about 24 other lymph nodes, of which two others had cancer in them. Then followed a wait before a PET scan, which suggested that they biopsed my left tonsil bed again: the primary was located there, but microscopically small, so the first biopsies had just missed it....

All that was in 2009. I honestly didn't think I would live to see a second Christmas but, following treatment, I am now just followed up in clinic every six months and have made a good recovery.

Needless to say, all my treatment was on the NHS and I'm quite sure I owe my life to being born in this country. I'm biased, perhaps, having worked for the NHS for most of my life, but I do think that the NHS is generally good at the serious stuff, like this. Which doesn't mean you shouldn't keep having high expectations, asking questions and making sure you get answers.

Best of luck with whatever this turns out to be,

WIth much love

Bron xx

Re: Hello, I'm new here too

4 Jan 2014 18:56 in response to bron33

Bron, nice to know of successes. I agree with what is said here about NHS. I have long held a strong belief that if you have something serious then the NHS is the best route, but was still concerned it might take longer to get to the point where there is a diagnosis (as compared to private).  As you can see, for me everything has moved on apace and I doubt much more could have been done, especially at Christmas/New Year. 

BTW, the ENT consultant did mention that they would usually deal with secondaries through a chemotherapy/radiotherapy route rather than surgery. But we still do not know what we are dealing with.

Forgot to mention I was diagnosed a Type 2 diabetic in Oct 2012 and have broadly self-managed my sugar levels since then.  I did go off my normal eating pattern in the run up to Christmas and I have no idea what level I went up to because life was very busy.  That was before I got the first lot of results.  Now its all serious stuff and potentially quite a bit of medical intervention to come.  I felt though glucose is something I can deal with, and have now quickly got the sugar levels back to where they should be. Another plus, the weather held off for my walk so I've done about 3 miles this afternoon. Hopefully all this will contribute and will strengthen me to deal with the big C.  More's the point even with the uncertainty there are things that I can do towards my health and that makes me feel better about it.

Re: Hello, I'm new here too

9 Jan 2014 21:27 in response to bron33

I have an update and diagnosis, and it's not too good.  Must first say NHS continue to be fantastic. Saw the ENT consultant today and the nurse from the breast clinic was also there.  The results show that the primary site is the left breast and it has spread to both underarms and also as mentioned before, the lymph nodes in the neck.  Additionally the CT scan report shows that the back bone is potentially affected with "suspicious lesions" so I guess that a bone xray is on the cards.  Cancer has not been detected in the liver, pelvis etc.  Case conference is tomorrow so I will start to know what can and cannot be done.

I am keeping myself together and I think mentally strong.  Done a long walk today again, have already started to rejig my life generally.  Considering more changes to diet, now have blood sugar levels bang to rights helped by a change in the times of day when I am eating - particularly no evening meals.

I am once again trying not to let my imagination get hold.  I am striking for being a cancer survivor rather than a cancer victim after all is said and done, but I have to say this is hard.

We all look for hope...