Seeking advice on having adjuvant chemotherapy or just regular scans

Hi BruceMc welcome to the group, but sorry you find yourself here. 

What a decision to make! I hate it when the doctors do this, I would rather they said what I needed rather than give me options.  I haven't had chemo myself, but maybe one of the other people in the group can share their experience with you which may help you to decide. 

Take care 

Hello BruceMc, I also had 2A non small cell Adenocarcinoma and had my right lung removed in 2014, the total removal was necessary because of the location of the tumour in the lung. I was told adjuvant chemo would give me an additional 5 percentage points to long term survival (no idea what the starting rate was) and so far I'm still OK over 7 years later despite an unrelated prostate cancer dealt with in 2016.

I decided to take all I the chances I could get to increase my survival prospects and figured that if I didn't like it or if the effects of chemo were too harsh to put up with I could always stop treatment at any time. I wanted to at least give it a try and not be full of regret later if the cancer came back and I had declined the treatment. Fortunately I completed the course and haven't looked back since. It's a very personal decision and needs careful thought but unfortunately you don't have too much time to decide. 

If you want any more info just ask.

All the best, Derek.

Hi Derek

Thanks for sharing your history. I had a cancerous prostate removed 3 years ago, so another thing we have in common. I spent most of my career dealing with statistics and when I saw that the advantage from adjuvant chemo was more like 3-4% rather than 5%, I thought I would give chemo a miss. I was also concerned that the cases I was reading were from people who were receiving treatment and those who had their tumour removed and lived happily ever after were missing.

Last few days I started to change my mind. I could see the nastiness of lung cancer and how it can go from good to bad in a very short period. Like you, I’m beginning to think it’s worth taking the risk with chemo in the hope of buying extra time.

Bruce

Hi Bruce,

Thank you for sharing your experience. This is my first post.

I find myself in a very similar situation to yours over a year ago. I had almost identical tumour size, and recent upper right lobectomy. No nodes affected and margins all good. I have the same decision to make regarding chemotherapy. I wonder what you chose to do in the end, and if there were any factors that were pivotal in arriving at your decision,

All the best,

P

Sorry for the delay in replying, but I was waiting for my latest CT scan. It’s been 18 months since my operation and for the moment I’m all clear.

After I had the operation, my oncologist left it up to me to decide whether to have chemotherapy. I thought I would consult other people and I went online here in Australia, and then in the US and in the UK before I found a handful of people who had a similar condition to me.

I think I was in touch with three people who proceeded with chemo and had positive outcomes and I think I was in touch with two people who were not offered the chemo option and their cancer came back. I also spoke to 2 cancer nurses and they said since I’m in good condition. I should have the chemo.

Because of the low benefit chemo gives I still wasn’t sure whether I should proceed. I have a cousin in Florida who manages a large cancer practice and she put me in touch with one of her doctors who specialises in lung cancer. He went through my history and the chemotherapy that was been proposed, and he said that I was receiving the latest treatment. He said that if I was his patient, he would encourage me to have the chemotherapy. After that I decided to go ahead with it.

The chemotherapy was not the best of experiences, but I manage to get through the four sessions over 12 weeks. I had numerous side-effects and by the end I was an expert on how to deal with them. They reduce the dosage slightly for the last two because of my blood count and I was getting tinnitus. I ended up with permanent tinnitus, but I’ve adjusted to it and it only worries me on occasions. I still have some tingling and numbness in my feet, but other than these problems so far I’m not aware of any other permanent damage. I hope this information helps, and if you have any further questions, let me know. 

B.

Hi Bruce,

really pleased to hear you are going well, and thanks very much for replying.

May I ask what chemo you had? I am intrigued by the cousin in Florida and wonder if I am being offered the same latest treatment here.

Also, in terms of information gathering, I wonder if you can remember if those who were not offered chemo were those it was deemed 'unnecessary' in the sense that if seemed to offer them no statistical benefit as they had perhaps small tumours and 0 affected nodes etc?

All the best,

P

Hello BruceMc, glad to hear you're still clear. I'm now 8.5 years now so still happy with that.

Platonic - I hope you get to the best decision for your personal circumstances.

I do think you may be right about chemo being regarded as "unnecessary" in some circumstances.

I'm in Australia like Bruce and I was not offered chemotherapy following my lobectomy last year.  My tumour was around 2cm (smaller than it appeared on imaging) when removed and histopathology confirmed that it was low grade and that the margins and nodes were clear.

Hi Platonic

 I’ve been away for a few days, so I’m just able to reply now. The treatment I received as part of the 4-session adjuvant chemotherapy was Cisplatin Pemetrexed. Here in Australia for tumours below 4cm they don’t tend to recommend chemotherapy. My tumour was 4.3cm and therefore I was given the option of which side of the line I wanted to be. Given my age and medical history, the doctors were not taking any chances and decided to remove the lobe and the cyst glands. Like Derek the Excavator, I also decided on the chemo, to give an extra few percentages of benefit. At the same time the chemo can also cause damage. I’m looking forward to being in the same position as Derek the Excavator and reporting that I’m 8.5 years free of cancer.

 A friend of mine was diagnosed the same week with a 1.7cm tumour, which was removed and he was advised that he didn’t need chemo. The two people who I came across, who wished they had been given the option, had tumours between 3 and 3.5cm, if I remember correctly.

 Unfortunately, everyone’s cancer has some unique characteristics and when combined with other variables, such as your demographics and medical history, it becomes difficult to compare specific cases. My late wife survived an inoperable brain tumour for 15 years, that kills most people in a few years. She had more than 80 MRIs during that time, probably a world record. So, in making a decision on what treatment you have, you need to be guided by your specialists and what you feel comfortable undertaking.  

 B.

That's great! Keep it going. I hope I have the same success.