Hi everyone.
I'm from the UK, and my Dad was diagnosed with LC in mid-April this year. Although his docs had been keeping an eye on a nodule they found in August 2009, it was only in April this year, that they thought a PET scan could give a definitive answer, as the nodule was around 1cmx1cm, but hadn't really grown or changed in 6 months. anyway the PET scan lit up like a beacon and so Dad got his cancer diagnosis on 21st April this year. Dad is 79, ex smoker, not smoked for 17 years now, but worked in the nuclear industry for around 20 years.

No needle biopsy was performed as they felt it was too near his rib to get at. So although we knew it was cancer, we have no idea what kind it is.

Dads was an incidental finding last August during a chest x ray for heart failure, so Dad and his surgeon were reluctant to opt for surgery, with his medical history, age etc. Fortunately Dads oncologist told him he was a great candidate for Stereotactic radiotherapy, to be done at Clatterbridge Centre for Oncology on the Wirral in the UK. Dad had 5 zaps, with no side effects, no skin irritation, he ate well throughout and no more tired than he gets with his heart complaint We are now 8 weeks since treatment, but 4 days ago Dad developed a cough, maybe just a seasonal cold, maybe the radiation, we are not sure. But he seems to be ok, he's still eating well, and at the moment just taking cough medicine.
I thought I would share dads story with you all, and keep you informed of his health over the next few months, he is due to have his first CT scan since treatment around the end of November.
Dad was only the 10th patient to have this treatment at Clatterbridge for LC. mainly in the UK it has been used for brain tumours. But I did do alot of internet research and found it has been used in USA for a couple of years or so

Thanks for listening
MandyB x

Hi Mandy,
Welcome to LCSC,nice to see another Brit on board,I am one of your Northern neighbours.I must say you could not find a better place to be than here for support,the natives all entirely friendly (I think theyve forgiven us for the American Wars of Independance)I have found being here restored me to full physical and mental health(although some here might dispute my claim to full mental health) It it good to meet new friends,looking forward to getting to know you.Enjoy a read through forums,educational and fun,loads of brilliant survival stories here that will give you some encouragement.Talking about encouragement,how about getting dad to join us here also? I am sure he would enjoy a wee tonic.Catch up with you later.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Hi again Mandy. It sounds as though your dad got through the treatment very well ... it is absolutely wonderful that he continued eating well and without fatigue during treatment.

Keep us posted - tell your dad to keep up the good work and thanks for sharing his story.

Wishing your dad great results at the end of November!

Linda

_________________
46 years old at diagnosis
Lucky mom of a 16 year old boy and 15 year old girl

Mar-May 2006-3 CXR's performed; eagle eyed radiologist caught something not quite right-F/U done
May 24, 2006-CT scan-suspicious for lung cancer
June 1, 2006-Went to Vancouver for private PET scan-SUV 1.4; ? bronchioalveolar carcinoma or carcinoid
June 5, 2006-Met with surgeon-thinks 1A-surgery soon
June 20, 2006-Left lower lobectomy via VATS
July 5, 2006-Pathology back-stage 1A, pure non-mucinous bronchioalveolar carcinoma, 1.8 cm, well differentiated
Oct 13, 2006-CXR, good
Jan 16, 2007-CXR, good
April 17, 2007-CXR, good
May 4, 2007-CT scan-good
Sept 18, 2007-CXR, good
Dec 18, 2007-CXR, good
March 18, 2008-CXR, good
May 30, 2008-CT scan-good
Oct 21, 2008-CXR, good-graduated to 6 month visits!
June 5th, 2009-CT scan-good!!!
December 3rd, 2009-CXR-good
May 27, 2010-CT scan-good-moved to once/year CT scan & visit!

4 1/2 years from surgery-so happy to be here!!!

Hello again! It's wonderful to hear your Dad's story. What a positive one! He really came through that radiation quite well, and I hope that in November, that nasty little tumor is gone. Stick with us, we're a fun bunch.

Eric is quite the advocate for LC over the big pond. He is quite hilarious and fun too. Don't know anyone who lives life better than him. Seriously.

I'm so glad I found this place when I did. It was 3 years after my diagnosis, but how nice to find such a great group. And I've learned so much about LC and am so empowered to advocate for it now that I am armed with the facts.

MI Judy

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Thank you everyone for the welcome. Eric its nice to have another Brit to chat to, and your blog is so similar to what Dad went through, with the double whammy of LC and 'maybe' bowel too

I will be back tomorrow and relate in more detail what happened from day of diagnosis.

In the meantime, I am so grateful this forum is here and I will be popping in and out frequently.

MandyB x

Hi again.

Here is Dads story in a little more detail. Please bear with me, it may be long winded, but I feel this is the right place to share my feelings, worries, hopes with you all. I'm an only child, and without brothers and sisters to talk to, confide in, cry with, I know that each and every one of you will relate to some of this. Although each person dealing with the diagnosis reacts diferently, and those closest to them react differently too. I sometimes shocked myself at some of the thoughts running through my mind days after dads diagnosis.

well here goes............... Dad was admitted into hospital with suspected heart failure, in August 2009, he spent 10 days having different tests and so many different scans, he couldn't remember the name of some of them. After about 5 days, he mentioned to Mum and me during visiting hours that a consultant had been to see him and told him they had found a 'module' ( yes, thats what dad called it) in his lung, and it was about the size of a halfpenny 1cmx1cm. That was it, that was all he told us. And to be honest we kind of dismissed it, as his heart was our main concern at the time. ( Little did we know eh?)

Dad was discharged from hospital and over the weeks with the right dose of medication his heart stabled, but he needs to be on about 7 tablets a day now. An appointment card came through the door for a CT scan, we presumed in was for his heart, and only discovered 2 weeks later that we were in the chest clinic and that they would be keeping a close eye on this 'module' for at least 3 years for signs of change.

Well that got the alarm bells ringing, and I started to delve into all things lung related, and it only then hit me that this could be cancer. Dad was a heavy smoker, I think all the pictures of my childhood my Dad is there in the background with one in his hand. He stopped smoking 17 years ago, more because he begrudged paying so much money for a packet, rather than health worries.

Dad was offered a PET scan after the 3rd CT scan showed little if any change, The consultant mentioned scar tissue, oh how wrong could he be? PET scan was performed on 13th April and results were back on 21st April, I knew as we walked into the consultants room that this was not going to be the news we wanted to hear.
Continued underneath.

The consultant explained to Dad that the nodule had lit up during PET scan, and that from now on it would be called a 'tumour'. He didn't say the 'C' word, and I worried that Dad may not have understood what he had just been told. So after that first blow, the consultant mentioned a bit of activity in Dads' bowel and he would be requesting Dad to have a colonoscopy ASAP. Thats when I felt like I had been hit by a ton of bricks, it was the most stomach churning, gut wrenching, buttock clenching experience of my life, I couldn't even look at Dad, We both walked out of the room, and didn't speak, I can't remember much about the drive home, just silence I think, and knowing I had to tell my 83 year Mum who was waiting at home for some news was almost unbearable. Ok, heres a bit of light relief for you all, I was just approaching Mum and Dads home, when Dad asks me to stop at the newsagents so he could pick up some lottery tickets!!!!!!!!!!! I kid you not, I was sat in the car a trembling mess and I could see Dad inside the shop filling his tickets in.

Colonoscopy is scheduled for June 7th, for all of you here that have had one of these, you will know that they make you take a potent medicine the day before to basically purge you of anything that you have eaten. yes you know what I mean, well there's a problem according to Dad, because that day (June 6th ) was voting day in the UK and Dad is determined that he has to go and vote!! I tried to persuade him not to bother, and to stay close to the bathroom at all times that day, but no, he went and voted, luckily the polling station was quite nearby in the local church,but I'm sure it must have been a mad dash just the same!!

Good news one week later. The biopsies were all negative, and all they found was a tiny ulceration in his bowel. one less thing to worry about, it felt like Christmas, seriously even with LC looming over us, we walked out of the hospital in such great spirits that day.

In July we met with the Oncologist, who gave us every available option to Dad regarding treatment, to be honest I didn't want Dad to have any treatment at all, that may sound so selfish, but having never been affected by cancer so closely before, I just thought of the 'horrors' of chemo, and if it would only give Dad a little more time, and that quality of life would be zero for him. I didnt want to see him suffer through treatment only to get a few more weeks with us. I told Dad I would support him in whatever decision he made, I would take him to all hospital appointemts, but I would understand that if he didn't want treatment, I would respect his wishes.

continued underneath

Over the next couple of weeks, Dad started to 'open up' a little to Mum about things, he read all the booklets the oncologist had given him, he still didn't want friends and family to know, but he seemed to be excepting the diagnosis, which was a huge step forward, because we were able to discuss things fully with him and not be frightened of saying the word 'cancer' in front of him. He then made up his mind that he would try radiotherapy, and when we went back to see the Oncologist, he told Dad he was a prime candidate for a fairly new kind of radiotherapy. Stereotactic Radiotherapy, A high dose precise treatment that could be done over 5 sessions. Some people only need 3 zaps, but because this cancer is so close to Dads rib and very near a main nerve, they would spread the dosage out over 5 zaps. I think its very similar to CyberKnife, GammaKnife in the USA.

The treatment would be done at Clatterbridge Centre for Oncology on the Wirral in England (North West UK) Its around a 100 mile round trip and I was concerned for Dad if he needed the 35 conventional radiotherapy Zaps that he would become to fatigued to make the trip every day. But he was very very fortunate to be able to have this fairly new treatment, its given in exactly the same way conventional radiotherapy is given, it just maybe takes a few minutes longer thats all. The first 'zap' day came around, and I was more nervous than Dad, unfortunately the planning team were not quite happy with the scans, x rays, and needed another 6 hours to perfect the treatment plan, so we were told the first treatment would be delayed by one day, But we had the peace of mind of knowing that they wanted to get things 'spot on' before they would even consider starting radiotherapy, when there are only millimetres between tumour and rib, then we were grateful they were being so cautious. The following day we returned and treatment started, it was all over in a flash, all those months of worrying, and Dad is back in the car tucking into cheese and tomato sanwiches and a mars bar!!!

I phoned home every couple of hours to check in on Dad, somehow expecting side effects to 'kick in', but no nothing, even after his 5th and final zap, he was absolutely fine, no skin rash, no redness, no fatigue, no loss of apetite, in fact he gained a little weight during treatment, I think it was all the sandwiches I prepared for the inward and outward journeys!! He continued to go to car boot sales and he goes out metal detecting once a week he takes my mum supermarket shopping, and generally his lifestyle is the same as before treatment. I could never have imagined things could have gone so well for him. Oh and he's still the first person at the Post Office at 9am on a Monday morning to pick up his pension

continued underneath

we are now 8 weeks since treatment, and hopefully the cancer is still getting 'fried' every day. Dads first CT scan is around the end of November and results will be one week later.

At the moment we are keeping positive and trying not to give cancer the time of day, we don't talk about it that much, but its not a taboo subject by any means, not like 6 months ago, when I couldn't even say the word without feeling sad, lonely and depressed. Now when I look at Dad, I look past his illness, where as before I was looking for 'signs' that his health was deteriorating, ( even though it wasn't) I pray that this has been caught in time, and hope to be able to bring you some good news in December. God willing.

Thanks everyone
Mandy xx

Mandy - wow, what a roller coaster ride your family has been on! I laughed out loud about the "module" ... crazy how we have to embrace the humor in this insane cancer world.

I absolutely understand the colonoscopy as I go for testing every 3 years as my mom had colon cancer. I honestly can't imagine having left my house for ANYTHING on the day I drank that horrid solution ... your dad is far braver than I! I can just picture him racing from the polling station to the church What a great relief that the test came back negative.

I gather he didn't win the lottery either the day he picked up the tickets. Who cares about the money ... as long as he wins at "kick cancer butt" he is a winner!

I am so impressed that your dad is so open and honest with you and your mom. So many men keep their feelings bottled up and that makes it so hard for those who love them.

I can tell by your posting how very much you love your dad. He really is truly blessed to have such a wonderful daughter as well and he must be so proud of the woman he raised.

I know you said you have no sibs; however, you can look at us as your online family! We always wish no-one had to join as it really isn't the "it" club to be in...but we're always happy to welcome those that must.

Keep us posted as to the date for your dad's repeat testing at the end of November. It's been nice getting to know you and your family and I look forward to hearing more from you Mandy.

Hugs,

Linda

_________________
46 years old at diagnosis
Lucky mom of a 16 year old boy and 15 year old girl

Mar-May 2006-3 CXR's performed; eagle eyed radiologist caught something not quite right-F/U done
May 24, 2006-CT scan-suspicious for lung cancer
June 1, 2006-Went to Vancouver for private PET scan-SUV 1.4; ? bronchioalveolar carcinoma or carcinoid
June 5, 2006-Met with surgeon-thinks 1A-surgery soon
June 20, 2006-Left lower lobectomy via VATS
July 5, 2006-Pathology back-stage 1A, pure non-mucinous bronchioalveolar carcinoma, 1.8 cm, well differentiated
Oct 13, 2006-CXR, good
Jan 16, 2007-CXR, good
April 17, 2007-CXR, good
May 4, 2007-CT scan-good
Sept 18, 2007-CXR, good
Dec 18, 2007-CXR, good
March 18, 2008-CXR, good
May 30, 2008-CT scan-good
Oct 21, 2008-CXR, good-graduated to 6 month visits!
June 5th, 2009-CT scan-good!!!
December 3rd, 2009-CXR-good
May 27, 2010-CT scan-good-moved to once/year CT scan & visit!

4 1/2 years from surgery-so happy to be here!!!

Mandy,

This was so good to read. Thank you so much for sharing Dad's story which is also your story.

You said this " Now when I look at Dad, I look past his illness, where as before I was looking for 'signs' that his health was deteriorating, ( even though it wasn't) I pray that this has been caught in time, and hope to be able to bring you some good news in December"

I pray for good news in December too, but if it's not, do still try to look at Dad and look past his illness. He will be your Daddy always, ill or not. I made the mistake of obsessing over my Mom's lung cancer, and it was making me nuts. Her story was not a good one in that she died at age 64 of the disease.

I made her miserable for the first 3 months after diagnosis, and then with good advice from one of my brothers, I learned I had to let her still be Mom, and that I was daughter, not the other way around. I could not control her cancer, and I could not control her life either. I had to learn that the hard way, and am thankful I did before it was too late.

We can be your on line family, and you can come here and write whatever thoughts you are having, and we will be here for you. You can bank on that.

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Hi everyone.
Not posted for a while, but I come here most days and read the forums.
My Dad is having his first CT scan tomorrow since stereotatic radiotherapy finished. Results will be with the oncologist next Wednesday (8th Dec).

Dad is feeling fine, with a little fatigue, but no nasty side effects. The Oncologist did tell Dad that the radiotherapy would break one of his ribs, but he didn't say how soon this would happen. Dad has no pain, so I presume his rib is still OK at the moment.
Please would you keep my Dad in your thoughts tomorrow.

Much love to you all
Mandy xx

Hi Mandy,
Still following your "Adventures with Dad" series,what a character he is.Yes I will be thinking of both of you on Wednesday,wishing both of you the best of British for a good feedback session with your oncologist.I am having my revised schedule for a colonoscopy on Thursday,silly me had a bacon roll the day before my last appointment,thinking it was still OK,timewise-wrong they wouldnt take me,I felt so embarrassed,in having wasted everyones time,wont happen again,promise.

_________________
Regards,
Eric Byrne

To read my story, please follow the link : http://lungevity.org/l_community/viewtopic.php?t=43268

Hi, Mandy, welcome, and thanks for the story on your dad. Looking forward to your updates.

I just finished Tony Blair's autobiography, A Journey — checked it out electronically from our public library to read on my Sony device. Fascinating and definitely worth reading, regardless of what one may think about some of the controversies surrounding him. Plenty of those British "turns of phrase" that many of us over here find so entertaining.

Best wishes and Aloha,

Ned

_________________
Ned is just my nickname, though it would be nice to merge it with the other meaning eventually...

Aloha means "Hello, goodbye, love, compassion, welcome, good wishes." It means belonging to others with a common humanity. It's defined better as a feeling in the heart than by words.

Dx NSCLC adenocarcinoma IIIb Sep 2006, now stage IV. Taxol+Carboplatin+Avastin 4 mo., Avastin 8 mo., Tarceva 16 mo., Alimta 12 mo. (sometimes combined with Cisplatin or Carboplatin), Navelbine since Feb 2010, 10 sessions of WBR in March 2011. See My Cancer Journey: viewtopic.php?p=351369#p351369 — UPDATED 03/05/2011.

Above left: Our golden retriever Rosie, who joined the family on 3/5/08 at the playful age of 2.

Below: Hannah, our golden companion 1994-2007.

Hi Mandy,

Your Dad is in my prayers for a good report tomorrow. Thanks for the update. Can't wait to read a good report after his CT scan tomorrow.

Take care,

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Hope everything goes well for the colonoscopy tomorrow Eric, Hope you didn't have a bacon roll today

Mandy xx