I'm new here, aged 60 and a never smoker (excepting for one instance of smoking a hookah/shisha as a 60th birthday lark in a Moroccan nightclub 8 months ago which the clinicians insist is not relevant - although I am not so sure given the timing). As a lifelong non-smoker I always assumed lung cancer was one cancer I would never have to worry about! Last month, I had a bottom right lobectomy for stage 2a lung cancer (at Papworth hospital). Its a double whammy as 18 years ago I had radiation and chemo following a lumpectomy for breast cancer. This new primary lung cancer together with infection developed in lung tissue right below the breast cancer radiation area. The clinicians think there may be a link. If so, my then GP and I were unaware of that risk and spent two months on two antibiotics and three x-rays before a referral. I'm keen to hear others views/experiences/knowledge of this potential link. Connecting to the very effective breast cancer support machine to ensure breast cancer survivors are aware of their long term lung cancer risk might help raise awareness, concern, sympathy and resources for lung cancer perhaps?? I am discovering that my assumption that, as a lung cancer sufferer, I would be offered the same or similar support and counselling as I was as a breast cancer sufferer is proving very misplaced! Thank goodness for the Roy Castle Lung Foundation!
Breast cancer radiation as a long ter... - The Roy Castle Lu...
Breast cancer radiation as a long term cause of primary lung cancer?
Sorry that you are on this journey too. As you are a non smoker it’s definitely worth asking to be checked for mutations eg EGFR, ALK, ROS1 as it might be a mutation which might be causing your lung cancer. If so there are targetted treatments available. Roy Castle to a booklet on this, which is worth looking at. There is definitely a difference in support available for breast and lung cancer, Roy Castle being the only one in the U.K. specifically for lung cancer. I think lung cancer is the poor relation. This needs to change and people seem to be working towards it but it’s a hard job. Wishing you the best treatment x
Thank you. Good advice and timely as I am seeing my surgeon today and will ask him. x
Are they checking for a mutation? I have just seen a post from lady in the ALK Positive group and she had breast cancer n radiation in the past. Hope your appointment went well x
Thanks to your tip off I asked the question of my surgeon who said no they haven't and don't do this check until they need to.. when they will still have the tumour in storage to analyse. In the meantime I am to have no further treatment as cancer has seemingly and hopefully all been removed. (phew!)
That’s great news, really pleased for you x
Thank you. Yes I feel a bit kinda guilty - discovering how few are in this fortunate position and I feel incredibly lucky, especially given wrong initial diagnosis and fast growth rate of tumour whilst going through 3-4 weeks of tests and then 3 weeks waiting for surgery. I justify my good luck to myself on basis that I had a huge whack of life changing chemo and - as it turned out - deadly radiation - 18 years ago, so am very thankful to be spared another load. I've got everything x for the future of course...time will tell. It is good to know there may be a line of targeted treatment if I need it. Good luck to you too.
Don’t feel guilty, it’s great that it was found early. That’s how it should be. Wishing you all the best
Absolutely, lung cancer is very badly supported. Many people think it's a smokers disease so have little sympathy for that reason. Sadly you've found out that isn't always the case but everyone deserves care and understanding.
I hope that you do well
Lung Cancer definitely carries a stigma I have Stage 4 non small cell never smoked no symptoms until walking 6 miles noticed I was a little breathless
I am so sorry. I do wish you well and I hope you are getting support. Yes I am discovering the stigma.
Ex Macmillan Nurse! Lots of support from family,Friends & Church Thanks 9 months since diagnosis
Thank you. Yes you are absolutely right.
Hi. Same happened to my mum. She had a lumpectomy and radiotherapy for breast cancer 15 years ago, now has lung cancer, same area of chest, diagnosed 2 years ago.
Thank you for your prompt response. I am so sorry to hear about your mum and I do hope she is making progress. I would be very interested to know if her clinicians told her that her previous radiation might be the cause or a factor? Also, whether your mum was aware of the risk of getting lung cancer having had radiation or whether, like me, she was unaware of it? Very best wishes to you both. x
Welcome to the club of us never smokers who thought lung cancer wouldn't affect us. Not only is there a need for awareness in the general public and medics that this is a growing number especially of women who develop this but there may be other factors at play so focussing all potential screening on smokers will miss many people like us in future. I had read about the link between radiotherapy for breast cancer and lung cancer only recently as conferences I attend automatically attributes the rising number of female lung cancer patients with the societal changes of women taking up smoking later and there being quite a time lag before it develops. Please find enclosed a link to a study about the link to radiotherapy for information. As others have said, many women have mutations for which there are targeted agents either as standard care or clinical trials so ask whether you'd be eligible for any of these too. good luck.
radiologybusiness.com/topic...
Thank you for the link...very interesting. It strikes me that there is lots more scope for research into the link between radiation and primary lung cancer which link I suspect is very underestimated. Yes non-smokers are much more vulnerable than I realised and there is a real need it seems to me for more awareness raising, both in the general public and amongst GP's. I have been very fortunate to have had a good prognosis from my surgeon yesterday and intend to devote some of my time, attention and resources to supporting this 'Cinderella cancer' through the Roy Castle Foundation.
I think there are many other areas to research as well - for example in Europe, there is research into air quality links to lung cancer and exposure to different industrial f substances whereas in the UK, only asbestos is followed up in this way.
Most UK researchers/clinicians focus on smokers - which of course, is the majority of patients so not blaming but there needs to be much more into the increasing number of lung cancers generally as well as more publicity that all treatment modes have improved significantly in the last few years due to concentrated efforts on this globally. However research is still disproportionate to the amount of deaths but we can learn a lot from the breast cancer community with their decades of lobbying and awareness raising.
Great news about your prognosis and fantastic that you'll be able to support Roy Castle - welcome aboard! A friend of mine now has heart failure as a result of her heart not being shielded years ago when she was treated for Non Hodgkins Lymphoma and she's had to give up work but as she's said, if she hadn't had the original treatment, she wouldn't now be here to be having the problem. Although mine was missed originally, I don't blame - rather seek to improve the situation for others especially as I'm still here to do so and many aren't. good luck.
Your positive reply and camaraderie is much appreciated Janette. Yes I wouldn't be here without the treatment of 18 years ago. I am sorry about your friend.
Thank you. Glad to help - for me, doing a lot of what I do sort of rationalises for me a reason why I developed it 'to give something back'. My friend is philosophical and getting on with her 'new normal' as we all do, taking early retirement and trying to do sedentary hobbies by joining classes/clubs - for new friendships too. One thing about cancer I've learnt is that so many people don't know how to react/deal with it especially lung cancer whilst others are 'golden'. 'virtual support' through forums like these can be particularly helpful from others who've trodden this journey before us. good luck.
As you've already experienced, there is a vast difference between how people sympathise (or not) with breast cancer and not lung cancer and the stigma is considerable and very unfounded especially when lifestyle contributes to many cancers and other long term conditions without the stigma of lung cancer. It is also extremely difficult to raise funds for lung cancer so not only are Roy Castle's resources very valuable and much appreciated, the efforts to raise funds to support them take so much more to raise than many appreciate. As you say, where would be without them? good luck with your discussions with your oncologist/medics.
See answer above and to add...I totally agree that seeking to judge suffering according to its causes is a slippery slope as so many illnesses can be attributed to a lifestyle factor somewhere along the line.
Hello, same happened to my mum. She was diagnosed with Breast Cancer 7 years ago and had lumpectomy, chemotherapy and then radiotherapy. I remember at the appointment with the consultant discussing the treatment options he explained that the radiation carries a risk of lung cancer but is more prevalent in patients who have had a mastectomy. He didn’t highlight it as a major risk and so my mum really never gave it a second thought.
Anyway my mum was diagnosed with primary lung cancer in both lungs just under 2 years ago - a primary tumour at the top of one lung and another at the bottom of the other lung which were right in the area of the radiation.
It is apparently quite unusual that my mum had a primary tumour in each lung and not a spread from one lung to the other and she did discuss the possible radiation link with her Oncologist. Sadly my mum contracted sepsis from pneumonia after some post surgical complications and passed away so it was never explored further...
Thank you for making contact and for sharing this with me. It reinforces my sense that the link is underestimated. My surgeon yesterday said it is 'rare' for breast radiation to cause lung cancer, although he also said that radiation is known to be carcinogenic. In the space of 24 hours there are now two other cases like mine brought to my attention through this chat line! I feel so very sad for you and your mum. What rotten bad luck after all she had been through. I hope you both had - and you still have - people around you for support. My heart goes out to you. xx
Thank you for the kind words. I agree with you that the link is somewhat underestimated, I have also read on the American site of other women who have developed lung cancer after breast radiation.
Sending you best wishes xx
I would be interested to know of the American site. I notice that radiation techniques following breast cancer are improving to give lower doses for our daughters at least, to benefit. It's small consolation I know, but perhaps thanks to cases such as your mum, my post surgical infection was taken v seriously by the hospital with readmission for a week of I/v antibios and I (and my daughter) are most grateful for that. xx
Hi sorry I should have said the name of the site! It’s called “Lung Cancer Support” used to be called “free to breathe” xx
Thanks. xx
My diagnosis was 7 years ago too and I was told certain things that have now changed mainly due to an increase in research, research outcomes, clinical trials and new treatments (in every mode - surgery, diagnosis/biopsy taking, radiotherapy, chemo, combinations of both, biologicals and immunotherapy.) The area of lung cancer research and treatment is a fast moving area so what was a given 7 years ago, is now better understood. My actual diagnosis has been reclassified twice in those years by the IASLC who set the standards for reporting them! Quite confusing yet more hopeful than at the time. Sorry to hear about your mum - I also think lung cancer is underdiagnosed as many pass away from pneumonia or other causes so lung cancer would not be the prime cause of death when recorded.
Hello Reflective60,
I am very sorry to hear about your diagnosis, as you can see from the others that have replied it is not unusual to feel a certain stigma when you have lung cancer, you have experienced breast cancer treatment and care and you may well notice a difference in the amount of support offered. Janette57 has included a very interesting link on radiotherapy for breast cancer and developing lung cancer, you should discuss with your oncologist if he thinks there may be a link with the previous radiotherapy. If you would like to talk with someone please give us a call on our nurse led helpline Freephone 0333 3237200
Unfortunately, lung cancer has a stigma attached to it that most will never understand. There are so many never smokers and even very young never smokers, that are being diagnosed with late stage lung cancer every year. Why people think anyone with lung cancer “did this to themselves” is beyond me. When first diagnosed I had a neighbor say “well you were a heavy smoker no?” Um...no. I wasn’t. But if I was fire that mean I got what I deserved? It’s awful. I’m s bad enough people give you that “poor you” look when they hear of your diagnosis.:.but then add to it the shaming that comes along with it and you have a whole new set of hurdles to deal with on top of your cancer. I had brain cancer in 2005. Should I not have been using my brain? It’s a little tidy and a whole lot unfair. I hope you find the support and encouragement you need and remember everyone here has it is directly effected by lung cancer so you’re safe to say whatever you want here. Be well.
Thank you. You are an inspiration - I thought I was really unusual having cancer twice over..but seemingly not alone in that. I was interested to hear on the radio in the night recently the lead singer of BoneyM - I don't recall her name - taking about having survived FIVE cancers, her last one being 8 years ago!
Not so unusual especially as so many people are living longer and cancer develops as cells degenerate which increases with age. Due to awareness raising within the breast cancer community, we're aware that breast cancer happens to younger women (and a few men) yet most breast cancer occurs in the over 70s.
My dad had his first bowel cancer in his 50s (when I was in my 20s) and had a surgical resection then 6 months later, was told it was back (I now know they hadn't removed it all) so had a colostomy. He's had skin cancer several times (probably as a result of ultraviolet treatment he had for acne when a young man) and in 2016 another major bowel cancer (unrelated to the original ones 27 years earlier) so had more radical surgery. he is now 88 and more polyps found in his bowel recently yet he goes on - looking after my 86 year old mum (with alzheimers), takes her dancing once a week, bingo, shops etc yet is all of about 8 stones in weight. He proved to me that not all cancers have a negative outcome and I believe his positive mindset has contributed to his outcome. He doesn't talk about his experiences but I know there are many like him - I have met several in cancer research groups in the UK. good luck.
What a grand and uplifting account - thanks for sharing it with me and I take my hat off to your dad. Its really encouraging to hear that cancer can be beaten off even when treatment hasn't cleared it. You are so right about the positive mind set. I have been very lucky to have had a fair chance of cure both times and I have/am able to hang onto that; I think the real challenge comes to those who have to live with un cleared cancer....which I have read now needs to be viewed as 'chronic' condition - rather than the death sentence it used automatically to be.
Thanks - he's inspirational. I agree about living with cancer - and heartened at the approach to treat as a chronic condition - look at the difference that approach has made to those with HIV/AIDs compared to 2 decades ago. Many lung cancer patients are living with it and new treatments are being developed all the time. This wasn't the case even a few years ago so it's all a step in the right direction even if we'd prefer a faster treatment discovery route. I think many of us live with the shadow of a cancer returning and how we approach that is important but given the latest statistics that 1 in 2 people will be affected by cancer in their lifetime, we need to reduce stigma and show by those affected now, there is hope and continued research will help others too .
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