jenkaz Posted May 10, 2006 Share Posted May 10, 2006 My name is jim i live in the u.k after having chest pains mostly after i drank alcohol i went to the doctors who referred me to my local hopsital in march of this year. After a chest x-ray which showed a shadow on my right lung i was sent for a Ct scan ( which showed a growth in the right lung and a (spot)in the left lung ) which they said could be due to scarring)The consultant who did not mention cancer said at my appointment its not looking good to which my wife asked could this be benign to which she relied no!!My wife then asked would the CT scan show any other areas that were affected she said yes. i told i had NSCC ardenocarcinoma of the right lung, the tumor being 3.5cm and attched to the thorax. The suggested treatment plan chemotherapy and possible radiotherapy as it is (localised) I even suggested Cryotherapy( Freeze therapy) we contacted a Hospital in middlesex who said i was an ideal candidate and there was no waiting list. ( joy) we had mentiond this to the consultant who said all we needed was a referral from my local hospital which was not a problem, BUt i needed to go down Mainstream treatment first as there was a remote chance that the chemotherapy would shrink the tumor and hopefully pull itself away from the thorax making surgery possible(This conversation took place early April)after the CT scan.( Operation not an option if secondary cancer detected) She then sent me for a Bronchoscopy of the right lung, results sweep of the right lung (clear) and thorax (clear) She informed that were was one part which they could not get to with the Bronchcosopy she then told me i would need to go for mediastinoscopy results (Stage 4L cancer of the right lung , lymph node clear( the one they biopsied). I then returned to the hospital for a further consultation to which they then delivered the hammer blow to which they informed me that i had multiple nodules in the left lung and tumors in the centre of my chest (in the glands they had not carried out a Biopsy on) So all this is based on a CT scan which had been carried out 4 weeks prior to the bronchoscopy and mediastinoscopy My problem is how could i have had a Ct scan, bronchoscopy, mediastinoscopy then have a completley different diagnosis one week to the next it seems as though they are discussing a different patient. they are now basing this diagnosis on the Ct scan? Surely the tumours would have shown i know i have cancer but i think there is a blunder somewhere. Any advice on this would be greatly appreciated thanks jim Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted May 10, 2006 Share Posted May 10, 2006 hi Jim. A hammered blow is a good way to describe what you have been through, for sure. Listen, do you have a primary care physician? Do you have ONE doctor who can get ahold of all of the notes from the specialists that you have been seeing? If so, he/she may be able to explain what has been going on and how they arrived at that conclusion. Another alternative would be that you get copies of all the reports and pour over them inch by inch to see what the chronology of events are. There were a few tests I had that I didn't see you mention. I had a brain MRI, a bone scan, and a PET scan. All of these were done to check for distant mets. Nothing about this is easy, Jim, but it is doable. Whatever the stage, no matter what, lc is scary. But, after time, the fright minimizes and for many will go away. You will be having some sort of treatment for your lc. Once you get started on doing something to get rid of the critters, you will feel better. There are treatments that can help. I wish you well in finding the right combination for your situation. We are have other Brits who post here frequently. Perhaps they can point you to good facilities? Keep up the fighting attitude. It will serve you well! Cindi o'h Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted May 10, 2006 Share Posted May 10, 2006 Hello Jim and welcome. Although I am sorry you had to find this board, you are in a great place to get advice and answers to your questions, as well as tons of support. I must agree with what Cindi is saying. It sounds as if you certainly need to get all of your test results and paperwork, etc to ONE doctor who can go through it all with you and get you on track for the best and proper line of treatment. I wish you all the best in this and shall keep you in my thoughts and prayers. Please keep us posted... Quote Link to comment Share on other sites More sharing options...
j ross Posted May 10, 2006 Share Posted May 10, 2006 Hi from a fellow Brit. There was also confusion with diagnosis. Is was not until they operated that they were able to see the full extend of Barry's spread. We have been around the block with the NHS but two years later we are so far in pretty good shape. Jennie Quote Link to comment Share on other sites More sharing options...
Kasey Posted May 10, 2006 Share Posted May 10, 2006 Welcome Jim, I'm confused also as to how all this came about! It appears to me that it would be a good idea to get all scans and reports in order and have someone else take a look..........you know.........a second opinion. Once all this confusion is cleared up you can get on with your tx plan and fighting this disease. Hope you get to that point real soon. Kasey Quote Link to comment Share on other sites More sharing options...
jenkaz Posted May 10, 2006 Author Share Posted May 10, 2006 HI I would like to thank you for your kind and very reassuring replies,We have asked for copies of all letters , scans reports, biopsy`s etc. I start my chemotherapy tomorrow so looking forward to getting on with it and hopefully getting this awful thing under control. The plot thickens a little,When i went for my mediastinoscopy there was also another patient who had been diagnosed with lung cancer mass ( right lung) we got on talking they told him he was to go to he hospital next morning at 6.45am as he was in theatre first. i was told to go at 7.15am to be prepped for theatre Second patient. As it turns out they took me down first, and dave second? He was to have a mediastinoscopy and a bronchoscopy.! I have told you my results. After many telephone calls to have his results he was told his no cancer in his lymph and left lung, whereas we had my results faxed through to my local hospital and we were told that i had nodules in my left lung, the lymph they tesed clear but tumors in my chest??All this from a Cat scan??So Confusing!! I will of course keep you all informed of the progress and i send my kind regards to you all and hope all of your treatments go well and wish you all a speedy recovery regards jim Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted May 10, 2006 Share Posted May 10, 2006 Jim Will be thinking of you as you begin the Chemo.. best of luck to you.. Hugs and prayers, Quote Link to comment Share on other sites More sharing options...
Maryanne Posted May 11, 2006 Share Posted May 11, 2006 Hi Jim Just wanted to welcome you and wish you luck with your Chemo. Keep us posted and know that we are always here for you if you have questions or need support. Just one question, I am not familiar with the term theatre in the UK, here in the US it means a place you go to see a movie. Didn't make sense when I read it in your post. Take care Maryanne Maryanne Quote Link to comment Share on other sites More sharing options...
karenl Posted May 11, 2006 Share Posted May 11, 2006 Maryanne, we use the term 'theatre' here also - meaning operating theatre. I presume the term relates to the viewing area in some hospitals where students and medical professionals can watch the surgery.....what do you call them in the States?? Quote Link to comment Share on other sites More sharing options...
jenkaz Posted May 11, 2006 Author Share Posted May 11, 2006 yes maryann karenl is right it is a operating theatre what do they call it in the usa. well had my first chemo today went better than i thought but it is early days yet, but i am smiling and focused on the future. Had a little better news today the small nodules in my left lung they now say that they cannot confirm it is lc or not. same as my lymph nodes.They have said that the tumours they can see in my mediastinum they cannot confirm yet if they are cancerous. i will however have a further Ct scan after my 3rd chemo treatment and if the spots in my left lung do not change then it is scarring, the tumours in the mediastinum i am not sure how they will determine those, and finally and more importantly the tumour on my right lung starts to shrink that will be the best news, i am going to sit on the fence with this so i can see both sides of the outcome. it is no good hiding away from what i may not what to hear BUT that is me!! well bye for now and once again thank you for your replies jim Quote Link to comment Share on other sites More sharing options...
ma's kid Posted May 11, 2006 Share Posted May 11, 2006 Welcome, Jim You have come to a wonderful place for support. Good luck with your current regimen and I really do agree with what Cindy wrote...get all your reports together and have one doc go over them with you. Many prayers, Jim Libby Quote Link to comment Share on other sites More sharing options...
Kaffie Posted May 12, 2006 Share Posted May 12, 2006 Welcome Jim, Wish you luck with your chemo, keep us informed how you are doing. Kathy Quote Link to comment Share on other sites More sharing options...
jenkaz Posted May 12, 2006 Author Share Posted May 12, 2006 Hi Ma`s Kid & Kaffie Thank you for your replies this is a real good support site and i am so glas i found it. reading some of the stories on here make me feel so positive, the strengh and will of the members is amazing i wish them all the best for their future treatments and i will be following progress of all members. do you have a section on here where i can find out the Acronyns. How do i upload a photo as a avatar. Mas KId Your mum seems to be going through the mill, BUt it sounds as though she is a spirited lady and will continu her fight against her condition i wish her all the best and a speedy recovery with with your love and support i sure will be soon. I will follow her progress. Regards jim Quote Link to comment Share on other sites More sharing options...
RandyW Posted May 12, 2006 Share Posted May 12, 2006 I believe that your theatre is called our Gallery for starters. WE don't have an acronym list but if you need anything just ask and 3rd to upload a avatar just email a jpeg file and note to KatieB@lchelp.com and either Katie Or Rick will do that for you. Welcome to the site if I have not said hello yet. My fave piecce of advice for newcomers is to get a smaall organizer/pocket Calender book in which to write appointments, Medication Lists, questions for Onc Dr. and test results. I used to write down everything in this book. Great to have. Good luck and again welcome to the community. Quote Link to comment Share on other sites More sharing options...
Carleen Posted May 17, 2006 Share Posted May 17, 2006 Hi Jim, I'm late to the welcoming party, but I just wanted to say Hi and welcome to the group. So sorry for all you've been through already, boy what a confusing mess. I hope your chemo is going well, and being tolerated well. I will say lots of prayers for it's successfully killing those cancer cells. I look forward to getting to know you more and will be on the boards more in the days ahead to offer my support and help. God Bless, Carleen PS. Love the picture of you and jenkazmrs Quote Link to comment Share on other sites More sharing options...
Don M Posted May 18, 2006 Share Posted May 18, 2006 Hi Jim: I am a late welcomer too. I think you should get a PET scan or a PET/CT scan to get better information on the masses seen in the ct scan. I would want better information on what is going on in my chest if I were you. I hope the chemo gives you significant reductions in your tumor(s) and that yu will be able to do surgery. don M Quote Link to comment Share on other sites More sharing options...
jenkaz Posted May 18, 2006 Author Share Posted May 18, 2006 Hi dom M Thanky you for yuur post, well i am due a Ct scan after my 3rd round of chemo but this is where it is the controversy starts, first of all i was diagnosed with 1 3.5cm tumour in my right lung, bronchoscopy of the lung and thorax Result( clear) Mediastinoscopy Result ( tumor in right lung 3.5cm Thorax (clear) Mediastinum(clear) so i am diagnosed with localized ardenacarcinoma of the right lung stage 4L whatever that is and i can find no reference anywhere about it.The following week i go to see the oncologist who informs that following a further look of the Ct scan ( which he had for (6 weeks) prior to the bronchoscopy & mediastinoscopy which showed nothing as i said he now says i ha mets in the left lung and some tumours in my mediastinum?? they did a biopsy on one of my nodes which came back clear also. So all of this is based on a (CT scan) my problem is how can they diagnose anything from a ct scan and without a biopsy i have now requested my medical records and i am asking for a meeting with the hospital for a meeting ( what do you think) thanks jim Quote Link to comment Share on other sites More sharing options...
Patty Posted May 19, 2006 Share Posted May 19, 2006 Welcome, Jim and wish you the best. Can you get a PET Scan? I was also told I probably had cancer in my right lung, in between and a small spot in my left lung, until I had a PET Scan which showed cancer only in my right lung. The PET Scan is supposed to "light up" active cancer spots. The CT Scan shows structure. Ask lots of questions until you are satisfied. Patty Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted May 22, 2006 Share Posted May 22, 2006 Welcome Jim. Rich Quote Link to comment Share on other sites More sharing options...
tatlyn Posted May 22, 2006 Share Posted May 22, 2006 Welcome Jim. All the best to you. Lynda Quote Link to comment Share on other sites More sharing options...
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