no primary and post treatment worries

[#1]

My diagnosis in August 2007 was a metastatic undifferentiated non-small cell carcinoma of unknown primary, although it is assumed the primary was in the lung and has now gone.  A secondary decided to take up residence in the trachea, wrapped around the vocal chords.  Surgery was not possible, so I had 6 weeks radiotherapy and 12 of chemo.  Originally I was told that the outlook was not good as the tumour was very aggressive. I finished teatment at end 2007 and scans show the tumour has been dramatically reduced - one oncologist said it had been killed but others do not go that far. I am now scared the tumour will come back very quickly (as it went very quickly), but there are no follow-ups scheduled for 6 months.  I am having trouble getting a positive attitude while all this is in my head.  I really want to get back to normal but find I'm very tired.Have others had similar experience?  How do I stop worrying about "how long I've got" so I can get on with life?  How do I know if it has gone altogether and what are the odds of that happening?Mark

[Gabe]

Hi Mark, You will find my details under Welcome to Head and Neck Forum. Can you please clarify when you say - "one oncologist said it had been killed but others do not go that far". Who are the others? At which hospital where you treated.  Can't you ring the head nurse in oncology to see if you can get an earlier appointment or perhaps your GP can do it for you? Cheers Gabe

[rarbie]

Hi Mark, I am new in the cancer game too. Had my surgery and radiotherapy which finished ~ 3 months ago. People have offered me tacet advice such as "no-one knows how long they have, you could be hit by a bus tomorrow etc" but this can sound cheap and unhelpful and can invalidate my fear of not being around to see my friends kids grow up or if I have kids, the same fear. Cancer and survival is tough. I am coping by travelling around Oz with my partner for 4 months(distraction from cancer stuff), but I am scared of going back home for the first post Treatment scans and oncology appt. Try to fill up your life again with fun,work, stuff you did before cancer. Counselling is also helpful-as is meeting other people going thru a similar experience if adjusting to the post treatment phase. Take Care, Rarbie

[Raven]

Hello Mark, Although our cancers were quite different, mine was less aggressively spreading, I equate the after experience as living with a gun to my head on a daily basis!  How much time and energy I choose to give that concept is up to me though; it's one of the few things I can control! I agree with rarbie that others' well intentioned comments about facing our own mortality are often rather obtuse, but again they're just trying to be helpful, so thank them and then continue on your own course! I've found that intentionally focusing on other thoughts and activities is helpful, not necessarily escapism.  I've  used meditation, guided imagery, Tai Chi and Yoga to help alleviate the stress and refocus my priorities mentally with great success! Not only do I believe that it's true that worrying won't add even one second more to my life,  I also believe that it might take away some of my life time.  So I try to 'live for today, plan for tomorrow'.  Best of living to you!

[Raven]

Hi Mark, Just me again with a quick note!  How do you feel about alternative ideas with dealing with cancer?  Just wondering whether you're aware that some research has concluded that cancer cells literally feed on sugars, particularly simple processed sugars.  Eliminating these may be of help in slowing down or stopping the growth of your tumour. Also, have you heard of Cassiac herbal tea?  If you put any stock in this kind of thing, it might be worth your while to check it out.  Raven

[rarbie]

Hi Mark and fellow head and neck cancer survivors. I just wanted to lt you know that I have been back from my runaway from cancer trip around australia' and have had 2 clear cat scans since my return! Hoorah!!!!!! All the meditating, organic vegetarian food (with the occasional KFC zinger burger-I am human!!) must be helping my immune system. I have a lousy chest infection at the moment-but am using the time in bed to re-listen to my meditation CD's I bought during my post surgery recovery and radiotherapy endurance event of 39 fractions in Feb-April this year. I just want to thank this site for existing and helping us survivors share how we make it thru this tough patch in our lives. I am back working part time and starting a meditation and massage business to share the insights I have learned from my Cancer experience with the healthy and sick. If people spent more time focussing on eating well, meditating, having fun with friends and exercising this may very well stop them from geting cancer in the first place-or if they do get it-they will be better placed to beat/fight it. I only wish that I had counted my vitamin and stress reduction intake rather than calories in food before  I got cancer!!!  Now I see what health and wellbeing is about and its not aiming for a size 12! All the best to you all,  hugs rarbie  

[tizz]

Congratulations Rarbie, good to see a positive attitude!Cheers!Tizz (5  years since diagnosis and still here!)

[admin_one]

Hi Rarbie,Thank you for your comments about the site. I am glad you found it helpful during your journey.Very best,Totocol

[rarbie]

Hi fellow survivors!It's about a year since I discovered this site when I was a 'cancer virgin'! -initially I posted in the skin cancer room as my cancer was a localised SCC before it turned into an aggressive little bastard (sorry to swear!) and metastasised into my neck lymph nodes.A year ago I was recovering in hospital from a 9 hour operation and i got out on christmas eve. I remember walking my border collie to the river on Xmas day so she could go for a swim. Its been a big year-after cancer Rx I travelled around Australia for 5 months, got married in a beach in Qld and came back to face the fear of followup scans which have so far been clear! YEAH!May I wish everyone a good christmas-revell in the pleasure of the good things in life. I am lucky to be here and feeling a whole lot better than this time last year. I am off to my job this am and so glad to be back working-even if its not a career oriented job like I was in a year ago. I am rebuilding my life and career and hope next year to get back into professional, well paid work-but for now I am happy to be at work-being productive and spreading the news to people tat cancer can be survived and that being healthy is not as hard as I used to think.Thanks guys for your support, especially Gaffo in the skin cancer room who was my first cancer e-pal!Hugs and all the best for living and getting the most life out of today that is available to you.Rarbie 🙂

[tizz]

Seasons greetings to all! And Rarbie, I was also "released" from hospital on Xmas Eve, know the feeling 🙂 Life gets better (except for this rainy stuff we're having in Sydney at this moment!Cheers!Tizz