Topic: worried about cancer spreading - please advise

hi, i have posted on this site before and i would firstly like to thank you for organising such a useful resource.

my dad is 61, diagnosed with cc july 05 - had resection in autumn of last year and we were told that all the cancer had gone.  my dad has just had a ct scan this wk which picked up enlarged lymph glands (not around primary site but elsewhere as lymph nodes around primary site were removed).  they think this could be due to an infection - my dad has a raised temp and so has been prescribed anti biotics, however there appears to be some concern that the swelling could be due to cancer cells in the glands.  I am so worried.  my dad goes to see the dr on monday to discuss the situation.  I feel plunged back down into a state of despair, i hope that it is just infection however i am worried.  the dr my dad is now seeing is not the surgeon who performed the op as we live too far away to visit him regulary.  the dr he is seeing now is quite negative - he keeps saying things like 'it is highly likely that the cancer will come back' 'you cannot be cured from this type of cancer' and 'if there is anything that you really want to do do not put it off' etc..etc..

has anybody out there got any experience of problems with the lymph nodes? - what could this mean?  i feel quite strongly that my dad does not need all this negativity from this dr, it is not helping.  Also if he feels so strongly about the likelyhood of the cancer coming back should he not be referring my dad to an oncologist? - he seems to take the attitude that chemo does not work and is not even worth trying.

thanks

jules

2 (edited by ukmember Fri, 20 Jan 2006 04:07:50)

Re: worried about cancer spreading - please advise

I agree that you certainly don't need all this negativity from the doctor. My husband is very much against knowing the statistics of this case. He takes the view that he is an individual and not a statistic. when we saw the oncologist this week I asked my husband -Do you to know the difference between survival rates with or without chemo? and he said No.

I have read that when there is a resection there is often follow-up treatment of chemo to make sure that the wound margins are completely free of any residues of the disease.

Several things I have found helpful:

The current view is the no cancer is cureable, the objective is to manage it so that the individual can live a relatively normal life. In that respect it is like AIDS. no -one recovers but many people live 'normal' lives and keep the disease under control. All of us know people who are living with cancer and in fact everyday on the street we pass people who are living with the disease and don't even know it.

Secondly if the survival rate is from x to y on average that means that some people will be on the extremes. Some people will die withing days/weeks of diagnosis and others will live way beyond the upper limit. That's the nature of averages. We believe that by taking a strong active approach, my husband can be on the upper end of the average and we are working in our lives to achieve that.

I can strongly recommend a book by Rosy Daniel who used to be the head of the Bristol Cancer Centre; it's called the Cancer Directory. She sets out all the resources that are available within the UK, both orthodox and complementary. She places great emphasis on 'health creation' once the orthodox medics have completed their job, e.g.  counselling, nutritition, relaxation etc and we are now starting down this route.

The most important thing is to be in control and not feel you and your dad are at the mercy of others; take control & take responsibility - that alone is a step in the right direction. Ask for another opinion, your GP will refer you to another doctor if you ask.

What I have found is that we have experienced ups and downs but we try throughout to see it as our responsibility. When we heard the info about the chemo my husband's response was - 'Well that confirms what we thought, we have to beat this ourselves!'

To paraphrase a poster my daughter used to have on her bedroom door (My room, my mess, my business!) 
MY CANCER, MY BODY, MY BUSINESS

All the best to you and your father,
Patricia

Re: worried about cancer spreading - please advise

patricia,

thankyou for your advice. You are right - i know, the only way to face this and get through the days and weeks ahead is to adopt a positive frame of mind and to confront it head on.  yesterday was a low day - i feel a bit better today.  I think you are right about the statistics - the drs just don't know - all patients have various strengths and it is impossible to generalise.  Your husband sounds like a strong person, i admire his approach, and i think my daughter would empathise with your daughter regarding her poster!

How is your husband? have you sought a second opinion? what is his current treatment? - I have come across the book you mentioned, it is very good, I agree and I would love for my Dad to take an interest in complimentary therapies, at the moment he is dismissive and has faith in the conventional route, I am working on it.

with best wishes

jules

Re: worried about cancer spreading - please advise

I found this website after looking at a short bio of Stephen Jay Gould, the evolutionary biologist who dies a few years back of lung cancer but after surviving adenocarcinoma for over twenty years. He has Patricia's attitude: the statistics are numbers in the aggregate. They don't apply to INDIVIDUALS. Look up Gould in Wikipedia and you will find a reference to his article on the subject.

Re: worried about cancer spreading - please advise

I looked up the reference to Stephen Jay Gould and Iam posting it below since it is such a positive message :
In July 1982 Gould was diagnosed with abdominal mesothelioma. He later published a column in Discover titled "The Median Isn't the Message," in which he discusses his discovery that mesothelioma patients had only a median lifespan of eight months after diagnosis. He then describes the research he uncovered behind this number, and his relief upon the realization that statistics are not prophecy. After his diagnosis and receiving an experimental treatment, Gould continued to live for nearly twenty years, until his death from another, unrelated type of cancer; a metastatic adenocarcinoma of the lung. The column has been a source of comfort for many cancer patients.