The Roy Castle Lung Cancer Foundation
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Thinking of saying no to chemotherapy

Hi, I have recently (4 weeks ago) had a lobectomy to remove the upper right lobe of my lung all done through keyhole surgery. The biopsy came back with positive removal of the tumour (4.7 cm) and the surrounding lymph nodes were totally clear of any cancer which is absolutely brilliant and I am so grateful. However I have been offered chemotherapy - 3 cycles - and I am really struggling to see the benefit of what appears to be a purely precautionary measure. I would welcome thoughts/comments from anyone else who has been in a similar situation and considered refusing chemotherapy. Thanks Karen

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Hi, I'm so glad everything went well for you with your op.

I was in a similar position earlier this year, removal of right upper lobe, tumour size 5 cm. Like you I was given the option of having chemo. When I met with the oncologist he said that people in my position who had chemo were 7% less likely to have a recurrence than those who had no chemo. This isn't a huge difference but it's 7 in 100 and I decided to go ahead with chemo in the hope of being in that small but significant number. My thought was that if the cancer did recur I wanted to think 'oh $*!%', not 'oh $*!% I wish I'd have gone for chemo'.

I had 4 rounds of gemcarbo, finished at the beginning of July. None of the side effects were terrible. On the first round, the worst thing was the constipation caused by the anti-nausea medication. On subsequent rounds I knew what to expect and Lactulose became my friend!

On the third round I was sick and felt low for a week, lost around half a stone. However, I think this could have been triggered by a bug or something I ate, as I was fine on the fourth and final round.

The other significant effect was fatigue, but this was off and on, plus occasional nausea. I was signed off work (still am, have a wonderful insurance scheme in place) but I think if I'd have been able to sit quietly in a corner somewhere doing something simple I could have kept going. Oh, and my hair has thinned but I still have enough not to worry about a wig.

A week after my last round of chemo I felt terribly tired and breathless, had blood tests which revealed haemoglobin was 8.4 (normal starts at 12.1) and platelets were around 28 (normal over 100). There was some debate about a blood transfusion but in the end they gave me a course of iron tablets. My bloods improved over the next few days.

Now I feel very well. Walking my dogs regularly (continued to do this through most of chemo) and am rushing around helping my daughter with her newborn and toddler. When I was first diagnosed I remember looking at the older one and wondering if I'd ever see him walk, now he's racing around all over the place. I am very grateful to have come this far.

During chemo I lived as normally as possible, meals out, dogwalking, keeping up with charity work etc. I started back at my weekly exercise class 4 weeks ago. I could probably go back to my part-time job now but the insurance company aren't reviewing me until mid-November and work have told me I'd be mad to come back before I have to, so I'm not rushing.

Sorry to have rambled on, and I know you were looking for people who'd decided not to go with chemo, but I thought it important to show that chemo isn't always debilitating and you don't necessarily have to put your whole life on hold while you're having it.

My view is that chemo is not like a mobile phone contract or a gym membership - you can get out of it if you don't want to continue!

Best of luck to you with whatever decision you make.

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Thank you so much for taking the time to reply to my dilemma which I am still deliberating over - it is still quiet early days and I can commence the treatment up to 8 weeks after surgery. I am so pleased all worked out for you and I wish you every happiness for the future. Karen x

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I had lower right lobectomy 9 weeks ago and currently going through a cycle of 4 chemotherapy. My surgeon told me that 10 years ago they would have just sent me home but the recurrence in such cases was high enough for them now to recommend chemo and radio to kill off any threats. I certainly wanted chemo - I want every chance to live as long as possible. For me - life is too precious to take a chance and the 'belt and braces' of chemo makes me feel more secure. Yes, it is tough and I'm tired but this type of chemo is not as aggressive as those that actually fight a cancer tumour. I have no regrets whatsoever and only time will tell on it's success. I am just grateful for the expertise and the care I am getting.

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Thank you for your response and I completely understand where you are coming from. I am still considering the options since at the moment I don't feel quite strong enough to go through anything else - I am only 4 weeks post surgery and have a colonoscopy scheduled for this week so I feel I need a little break to gather my strength when I know the decision I make will be the right one for me. Kindest regards to you. Karen

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I also had an upper right lobectomy nearly five months ago but it had also spread to the hilar lymph node so I was offered adjuvent chemo to kill any cancer 'seedlings' (sounds so innocuous doesn't it) that were in my circulatory or lymphatic system. Based on the size of the tumour (over 4cm), the fact that it started to spread and the oncologist telling me the treatment was proven to increase my chances of non-recurrence by 10% I decided to go with the four cycles of cisplatin/vinorelbine which I finished three days ago.

I found the anticipation of waiting for it to start much worse than the actual treatment. I suffered occasional mild nausea at first but no sickness and apart from the fatigue, which is cumulative, the whole process was tolerable so I'm glad I went through with it so that I can feel reassured that I've done everything I can at this stage to fight the disease.

One thing I would recommend for anyone who gets put on steroids for sickness control is to ask the oncologist for an extra supply so that you can reduce the dose gradually rather than stopping dead as I found the withdrawal symptoms brutal but once that was sorted out it was all fine.

Once I had completed my first cycle I went back to work though mostly I have been able to work from home and avoid the commute (and commuters with their germs!) and now all I have to deal with is the tiredness which will hopefully start to diminish with time.

I'm lucky to have a great team of doctors and only time will tell how it all works out but I have no regrets about doing the chemo and it was nowhere near as bad as I had anticipated.

Good luck with whatever treatment you decide to go with

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Thank you so much for taking the time to reply with so much detail which is very much appreciated and will go a long way in helping me make my final decision. Much happiness to you. Karen x

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Hi Karen. In 2015 I had 2/3 of my left lung removed for adenocarcinoma. There was one node involved, so I was offered chemotherapy. I was 73 years old at the time and after reading the literature and talking to the chemo nurse, I decided to decline. Two years later, I am doing well. This is an individual decision. Here in the U.S.A, they do not offer chemo unless a node is involved and in one clinic more than three nodes are involved. Do whatever you feel most comfortable with. I do not regret my decision, even if this nasty disease comes back. I wish you the best in whatever decision you make.

Jean

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Hi Jean

I am so pleased for you and glad that everything is going well. I am still considering what to do for the best - if I am really honest with myself I don't want to go for the chemotherapy but am feeling quite pressured by my family which makes the decision harder - hey ho - I will get there. Kindest regards. Karen x

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Karen, you must carefully consider the pros and cons of having chemo. It is different for each of us. Fortunately, my family agreed with my decision and even if they didn't, the decision would have been the same. If you are leaning away from chemo out of fear, discuss it thoroughly with you doctor's before deciding. In my case, I was dealing with two separate cancers, breast cancer then lung cancer 3 months later. The proposed chemo would have been for the lung cancer only and by lowering my resistance, might have encouraged any stray breast cancer cells to grow. Also, the chemo proposed would have increased my chances of a 5 year survival by 8%. Fortunately things are going well for now. I take an estrogen blocker for the breast cancer and so far so good. I decided if I must do battle with this nasty disease, I did not want to fight a two front war. One was more than enough.

I hope this is helpful for you. Treatments have improved dramatically in two years, so there are now more options. Also, each of our circumstances is different. I wish you well in making this most difficult decision. Thoughts and prayers are with you.

Jean

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Hi Karen

I had a left upper lobectomy in Dec 2010 and diagnosis of adenocarcinoma 7cm in Jan 2011. I was told that there was little evidence that chemo worked in the specific type of tumour I had (BAC now reclassified as AIS) so to 'go home and get on with my life'.

I have done so and apart from chest infections (several of which were investigated for suspected recurrence but so far, so good) I'm fine. I'm fitter now than before surgery and have swum further in the years since than before. I work full time and travel. I returned to work 4 months after surgery. (which was traditional thoracotomy not keyhole). I was told they had taken all the margins and that lymph nodes were clear.

I've met others who had chemo for other cancers who have lived with side effects and continue to live with side effects. However in recent years, newer regimes have been developed or different combinations that seem to be less ravaging than previously.

My follow up treatment has been 'vigilance/watchful waiting' which can be stressful especially on the lead up to the annual checks. The steroids mentioned are often prescribed anyway for the repeated chest infections and they have side effects but overall, I'm glad to be still here and able to experience life with all its ups and downs.

Ask your clinician about your specific tumour, size, location, pathology as one thing I've learnt in getting involved in lung cancer research in recent years is that everyone's situation is different so it's important to get specific information about your own situation. I recognise the value of learning from others but overall health, tumour type, smoking status or exposure to other carcinogens, age, general fitness and mobility etc may differ from yours. Good luck whatever you decide.

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Thank you so much for your positive reply and the details provided which I know will help me with my eventual decision. Best wishes - Karen x

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Hello karenl55,

welcome to the Roy Castle forum, I am sorry to hear that you have been diagnosed with lung cancer, you will be relieved that your surgery is over and that your surrounding lymph nodes are free from cancer. It is understanable that you will be anxious and have questions about any further treament this is a good place to get first hand advice from people who have been through similar treatment, as you have seen some others have shared their experance of having chemotherapy after surgey.

If you get back in touch with the team responsible for your care they will be able to support you with any questions you still have to help you make the best decision.

If you wish you can call us on our free nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

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Thank you for your support which is much appreciated. Kind regards. Karen

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It can be really difficult to make decisions when feeling pressured from friends and family who may mean well but don't always think what the patient themselves may be experiencing/fretting about/feeling. Good to use a helpline or other sounding board or specifically the CNS who will have your file notes specifically rather than generalising. good luck whatever you decide and best wishes as your start your recovery from this bout of treatment...

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