My Darling Wife after Years Suffering from Lupus was Diagnosed with Limited Stage Small Cell Lung Cancer last November, two tumors 3 cm each, one in her Left Lung and One in her chest. A devastating blow to us all as she has been a Non Smoker for 27 Years. Our Local Hospital were brilliant in picking it up so quickly and within five weeks she'd had her first Chemotherapy Cycle. A week after her third Cycle she had a CT Scan and there was No Evidence of the Disease. Over the months Iv'e read and learned extensively about this disease,I know its not Cured and its a tough one to beat and this is just the first battle in what could be a long war. And I know Limited Stage Small Cell Lung Cancer responds well to Chemotherapy, but is this Total Response and Remission the norm after so few Cycles.
Is No Evidence Of Small Cell Lung Can... - The Roy Castle Lu...
The Roy Castle Lung Cancer Foundation
My mum was also diagnosed with Small Cell Lung Cancer at the end of September last year. It came as a total shock to us, she had been sent for a routine X-ray, totally unrelated, no symptoms and also a non smoker for 24 years.
As with your wife we were lucky that it was detected so early, affecting one lung and the lymph nodes in her chest. Her chemo started very quickly and after her third cycle the cancer was undetectable.
The oncologist decided to end the chemo after 4 cycles and to begin radiotherapy on the lung for three weeks. She's just completed week one yesterday.
Like you, I read everything about SCLC and initially thought the prognosis was quite bleak, the oncologist also gave the worst case scenario but was thrilled with my mums response to the chemo.
She had no side effects at all with the chemo, however, the radiotherapy seems to be affecting her more, she has remained very well up until the end of this week but is feeling very tired, indigestion, dizziness. However, I suppose it's a small price to pay if it's doing its job, it's just difficult to watch someone you love who is normally very active become so drained.
Fingers crossed it doesn't get any worse.
I hope your wife continues to respond well to the treatment, I'm sure, as you pointed out, early detection really helps.
Thinking of you and hoping the treatment has a positive outcome for you both.
Really Really pleased for your Mum, only two more weeks Radiotherapy then a further week I assume of Cranium Radiotherapy.
My wife has had Four Chemotherapy Cycles now and number five of six is scheduled for March 15th. She too has done well with Chemotheraphy and seems to cope better with each one. Probably as a result of dealing with a chronic autoimmune disease for over 30 years.
Our Oncologist who like most doesn't give much away seemed quietly pleased and decided to carry on with Chemotheraphy as in his words he said it's obvious agreeing with you Mrs Moore.
I think having both researched it extensively we both know that there is a long way to go with the disease and We can only Hope and Pray that with both your Mum and My Wife despite it not showing on their CT Scans when detected, it is not there lurking unseen.
But at the minute we must be positive but guarded and can only deal with what is and accept the good response and Remision and not worry about something that may or may not happen in the future.
And I guess that's the nature of Cancer sufferers the World over to accept what is and not what might be.
Best wishes to You and Your Mum from Me and Mrs M.
Very wise words, my motto is One Day At A Time, I think it's the only way to deal with this, or at least the best way.
Like you said, positive but guarded, I just quietly watch for any changes or unusual symptoms, it's become the norm.
The oncologist had planned to do Cranium Radiotherapy initially but when we went to the appointment to discuss the radiotherapy treatment he had decided against it. Whether that will change or not I don't know. He explained it was a preventative treatment and I had read that, however, it isn't currently scheduled. I will ask again at the next appointment.
Both you and Mrs M are in my thoughts and prayers.
I think I have got it wrong and the chance of memory loss is only when heavy doses of Radiotherapy are given to a Brain Tumour and not when giving blanket preventative Cranial Radiotherapy.
Hope everything go's well with your Mums second week of Radiotherapy, all the best from Me and Mrs M.
Thanks for your message, I'm going to have to query why the cranium radiotherapy has been decided against. It is concerning me.
I remember when my mum was first diagnosed the oncologist mentioned she may not be suitable for it as she received radiotherapy on her eye 2 years ago as a result of cancer and that it could cause brain damage.
I think the safest thing I can do is ask if she can or will be suitable for it as it currently isn't scheduled so I would like this explained again.
Tomorrow we begin week two of the chest radiotherapy, thank you for your good wishes with this. I will keep you updated with the progress.
Wishing you and Mrs M all the best with the ongoing treatment.
Many thanks to you.
Likewise, I'll keep you updated on the Progress of Mrs M after we have seen the oncologist on the 14th and she has had Chemotheraphy Cycle Five on the 15th.
Apologies if I have inadvertently given you cause for concern. Best to double check with the Oncologist on the Cranial Radiotherapy treatment and any possible risks.
I seem to think it can be done a few months after the end of Chest Radiotheraphy.
All the very very best with the remaining Radiotherapy.
No need to apologise, it's been on my mind for a couple of weeks. If anything you've confirmed what I believed to be the correct course of treatment.
The first appointment with the oncologist was at the end of September, but I do remember him saying she would not be allowed the cranial radiotherapy after already having it on her eye.
When he decided to stop the chemo after the fourth cycle the cranium radiotherapy was back on the table. I was obviously concerned remembering what he had initially said about this. However, before I got chance to speak to him about this my mum was told she didn't require it.
Unfortunately, my sister took my mum to that appointment and didn't question anything. We are very different, I'm a need to know as much info as possible and I research everything as well as questioning when I feel necessary, whereas my sister listens and accepts.
Therefore, this has been bothering me for a couple of weeks and so the only way forward is to ask. I haven't mentioned it to my mum as I don't wish to worry her and I don't really want to ask in front of her as, again, I don't want to worry her.
Somehow, I'm going to have to get to the bottom of this without causing my mum any concern.
I do know I'm not imagining it though, you have only confirmed something that was already troubling me. I couldn't understand why it wasn't an option, then it was, then it wasn't necessary...doesn't make sense to me from everything I've read, as you are already aware.
I will get to the bottom of it, it's how I do that without worrying my mum.
Many many thanks for your input, it's much appreciated and good to speak to someone who, like myself, has done their research.
Best wishes to you and Mrs M.
Take care, Jacqui
You keep pushing and asking the questions and now like Me forget all the statistics and concentrate on the only statistic that matters in your case your mum, in mine Mrs M.
We both know we are going to have to be extremely lucky for the disease not reoccur, but at least following the No Evidenvce of Disease after Three Chemotheraphy Cycles both your mum and my wife have a fighting chance.
And by you pushing and asking the questions rather than feeling helpless you are fighting for your Mum in the only way you can.
Get her through the Chest Radiotherapy and ask the question on Cranial.
Stay positive and focussed concentrate on the here and now and let's hope and pray Fate will be kind to your Mum and My Wife.
Best Wishes from Me and Mrs M.
I think Chemotheraphy has little effect on the Brain and therefore Cranium Radiotherapy is preventive and given in its place. It is udertaken due to the statistics that if or when SCLC returns without Cranium Radiotherapy it reappears in 50%.,while if given it reduces to 5%. I think some memory loss is a potential side effect but am uncertain if there are any Others. As far as I am aware My wife is due to have Cranium following the Chest Radiotherapy but like you we'll check at the next appointment.
Well I took my mum for her radiotherapy today, her last treatment is tomorrow, and we had an appointment with the oncologist after her radiotherapy session.
I raised the subject of cranium radiotherapy and asked why this had not been scheduled as a follow on treatment after the chest radiotherapy.
He confirmed that as my mum had received radiotherapy on her eye in 2015 the cranium radiotherapy was deemed too risky and could possibly cause brain damage if given. So, at the moment it isn't an option unfortunately.
I fully understand the reasoning and concerns from their point of view, just feel disappointed that it isn't an option as he explained it would normally be given following the chest radiotherapy.
So, after her final radiotherapy treatment tomorrow, we return to clinic in 6 weeks time to see how she's doing, she will have an X-ray and bloods done prior to this appointment. Then in three months she will have a full body scan and any further treatment will depend on the results of that scan.
So that's where we are up to. I hope Mrs M is still coping well with the chemo treatment.
Best wishes, Jacqui.
Good to hear your Mums Radiotherapy is almost at an end. I know its been a trying time for her.
Like Mrs M as your Mums Tumours did not show on the Scan after Three Chemotherapy Cycles, so what areas did the Radiotherapist target the Linear Accelerator too. The Tumours shown on the Original Scan or targeted to a larger or smaller area ??.
It's understandable the Oncologist been wary on the Cranial Radiotherapy, but don't be too downhearted , after the good response to Chemotherapy it probably won't be an issue.
One thing I did press the Oncologist on this week was my original question on the forum, and as you know they are very guarded ( understandably ) and don't give much away. He confirmed that no evidence after three cycles was not the norm but a very very good response.
But we both know that doesn't mean its totally gone or cured, but the best result we could wish or hope for under the circumstances.
Fingers crossed that everything go's well for your Mum in 6 weeks and the Scan in three months. Keep us posted, we would dearly like to know how your She gets on.
Our Oncologist decided to postpone Mrs M's Chemo Cycle a week in order to give her body a bit more of a rest in order for her Blood Counts to recover. A bit like your Mum, disappointing but perfectly understandable as the disease is under control and in remission, and given her liver was a bit tired he thought there was little point in bombarding her body unnecessarily.
Our Oncologist is keen for Mrs M to complete the Six Chemotherapy Cycles, and because of the response he says he may well hold back on the Chest Radiotherapy and hold it in reserve for a later date.
But he hasn't decided yet and will see how things go.
The Cranial Radiotherapy will be over two weeks.
if God willing everything go's to Plan our Ruby Wedding Celebrations in April will be sandwiched between the Chemotherapy and Radiotherapy.
Best Wishes & Kindest Regards to You Both.
Paul and Mrs M
Many thanks for your quick reply.
The original scan showed only one lung affected and the lymph nodes in the centre of the chest but the LA was targeted at the whole chest area.
My mums oncologist confirmed that No Evidence after 3 chemo cycles wasn't what he was expecting, however, he was very very pleased and, as you know, decided to go ahead with cycle 4 but said he didn't feel it necessary to complete the 6 cycles as originally planned. His view was that there was no benefit to my mum pumping more drugs into her than necessary and decided to start the chest radiotherapy instead.
I'm sure Mrs M will benefit from a break with the chemo, it will give her body a chance to get stronger ready for the next round. At least with the brilliant scan results it does give the oncologist the option to be able to offer this which, whilst disappointing, can only benefit Mrs M.
I sincerely hope that she is feeling well enough to enjoy your Ruby Wedding celebrations and that the treatment doesn't interfere too much with this. Congratulations to you both in advance! My husband and I celebrated our Silver Wedding in September last year.
I will keep you updated and would really like to know how Mrs M's treatment is progressing.
Sending my very best wishes to you both.
Hi Again Jacque,
I think it only go's to show what the Lung Nurse told us from the beginning. Forget the statistics everyone is different and everyone can respond in a different way. Put 20 people in a room with the same Cancer and no one would react or respond in the same way to the same treatment.
I'm guessing with you and hubby celebrating your silver wedding anniversary your Mum is a lttle older than Mrs M, who is 60 and may be a factor in his thinking.
Just as I think Mrs M's underlying autoimmune disease of Lupus is a consideration in our Ocologists path.
I think our respective Oncologists are giving your Mum and Mrs M the treatment they think will succeed and is best for them, their disease and their body with a Treatment Plan of Cure.
I think your Mum and Mrs M are both in safe hands with their respective Oncologists abley assisted by You in Your Corner and Me in mine.
What we both need now is a big slice of lady luck and hope that the treatments continue to be successful for your Mum and Mrs M and that the future and fate is kind to us all.
Remain Positive and Strong.
Best Wishes from Me & Mrs M.
It's took me some time to be able to write this message to you. I have been thinking of you and Mrs M often and wondering how her treatment is going.
Sadly, my lovely Mum passed away on 17 May which, as you can imagine, came as a huge shock to us all following her fantastic response to the chemo.
In one of my previous messages I informed you that we had just one chest radiotherapy session to go when we saw the oncologist, at which point he told her that he would see her in 6 weeks time and then again in 3 months. All seemed well and very positive.
Her chest radiotherapy finished on 17 March, the day after her oncology appointment, and we felt so relieved. However, our relief was very short lived when my Mum experienced a short episode of paralysis on one side of her face and down one arm just 4 days later on 21 March. It was my husband's birthday and I'd just returned from collecting his birthday present when she called me. I immediately rang an ambulance and after being admitted to A&E it was felt that she'd merely suffered a mini TIA and was discharged at 2.30 in the morning with a referral to the stroke clinic. The next day I took her for a brain scan organised by the stroke clinic and the news was devastating. The scan showed multiple small metastases in the cerebellum and so was forwarded to her oncologist.
From that point she moved in with me as it was not safe for her to be on her own. She was put on the steroid dexerthermine to reduce the swelling and did undergo one palliative cranium radiotherapy treatment.
I managed to care for her at home which was the most precious time, the hospice nurses were very supportive and visited regularly and she was only taken into the hospice near the end.
She passed away on 17 May, just two months after her treatment ended, I can only presume the metastases on her brain were already present whilst she was receiving the chest radiotherapy.
It was all so sudden and such a huge shock after feeling so positive about her response to the treatment. I am truly devastated, hence it has took me time to update you with such tragic news. My Mum was 77 but so young in her thinking and so beautiful. I miss her dreadfully.
I sincerely hope that Mrs M is doing well with her treatment.
I'm so terribly terribly sorry to hear about your Mum, I don't no what to say, words can't express my sadness for you in this difficult and traumatic time.
When we last spoke Mrs M was due to finish six Chemotherapy Sessions followed by Cranial Radiotherapy and No Chest Radiotherapy. Our Oncologist changed his mind on the Chest and she had 20 treatments to the Chest and 10 to the Brain. The last one was two weeks ago on June 21st.
Mrs M is doing OK albeit its only two weeks but shes really tired and not eating a lot, but things are improving on her swallowing front when eating and drinking. Her hair began growing back nicely before Chemo finished but the Cranial Radiotherapy has ended that, and its now starting again.
We have her first follow up meeting with our Oncologist on August 1st, before which she has to have a Chest x-ray to see how things are looking on her Lung following the Chest Radiotherapy, which was targeted to where the two Tumors had been.
You have knocked the stuffing out of Me with your sad and unexpected news and I only hope and pray Mrs M has no spread to the Brain, as I guess like your Mum she's never had a Brain Scan.
I know your Mum never had Cranial Radiotherapy due to your Oncologist feeling it was too risky due to past treatment to an eye Tumor, and Chemotherapy has no effect due to the Brains protective membrane.
I can only hope and pray that if there were any Tumor cells lurking in my wife's Brain the Radiotherapy as destroyed them, just as I hope & pray the Chemotherapy has done like wise to everywhere else.
I was hopeful that we just might be one of the very very lucky few who manage to beat the evil disease for a few years but after your devastating news I'm beginning to realise its probably a forlorn hope.
I know when we see our oncologist he will only tell us at the moment we are in a good place and cannot give us any comfort or assurances and only time and three monthly CT scans will provide us with the answers.
But it won't stop me from Believing.
Kindest Regards & Best wishes to you and your Family.
Thank you for your kind and understanding message and for your update on Mrs M.
I'm afraid words fail me at the moment as, like you, I always held out hope that my Mum was going to be one of the very few lucky ones and that she would have much more time, especially as our hopes were raised in December with the news that the chemo had been successful in that there was no evidence.
I do believe that not being suitable for the cranium radiotherapy played a big part in the outcome for my Mum. What I have found soul destroying is the fact that every day that I took her for the chest radiotherapy, the cells must have already travelled to her brain for her to collapse just 4 days after her treatment finished.
She was an extremely positive lady with tremendous courage and I just can't help feeling so sad that she endured all of that treatment with such grit and determination to have her hopes dashed so very quickly. It was, and still is, such a gut wrenching shock.
I'm absolutely sure that Mrs M having had the cranium radiotherapy already will stand a much better chance with this dreadful disease. You can only stay positive, continue to support your wife as you have all along and never stop believing.
My mum also had problems with swallowing after the chest radiotherapy, unfortunately that is one of the horrible side effects of that treatment. I sincerely hope that Mrs M continues to improve.
The irony with my Mum was that her lungs remained clear of the disease, sadly her problem was the cancer cells that had spread to her brain.
My Mum was extremely unlucky, her disease was caught very early, noted as Stage 2 with no metastases, her response to chemo was excellent, but as we both know the cranium radiotherapy is vital. Only someone who has trod this path with a loved one can understand the heartache when you've been at their side every step of the way
I will keep you both in my prayers and God willing Mrs M will continue to improve.
Hi again Jacqui,
Please God I hope you are right.
If you recall our Oncologist was considering holding back on the Chest Radiotherapy, due to no evidence of the disease after Chemotherapy and he saw the Cranial Radiotherapy as more important. But I'm only pleased he decided to blast it with everything and maybe that will give us a better chance and outcome than your poor Mum.
I think we both knew from the start the only and best chance we had is if the diseases at Diagnosis despite being classified as Limited had not spread anywhere else that the Scans couldn't detect. And an MRI scan wouldn't pick up any Tumor cells only Tumors in the Brain, just as the CT Scans can only pick up the Same.
I really feel so sad for you & your family at the loss of your Mum especially after her Valiant but in vain fight against this truly evil disease, that you can only begin to understand if you have shared the pain and the journey with a loved one.
I have to and will keep believing that Mrs M at only 60 will stay in remission for a long time, be by my side for many years to come and she will see her three wonderful Grandchildren grow up.
It brings tears to my eyes for know for that to happen we will have to be extremely extremely Lucky.
My Sincerest Good Wishes to You and Your Family
Hi again Paul,
It may sound strange, but I have felt more comfort from your messages than I have from friends around me who, whilst they have offered their sincere condolences, have no idea of the pain and heartache my family has been through. The pain and heartache is not just about the loss of someone so special, so loved and so irreplaceable, being by that persons side throughout their treatment, living with it every day, supporting them every step of the way through the ups and downs, you live the nightmare with them and it takes its own emotional toll on you. As someone who has been through the same ordeal with your wife, you understand that the pain begins from the day you receive that diagnosis.
I hope with all of my heart that your prayers are answered, you will all remain in my prayers too and God willing Mrs M will be by your side enjoying her grandchildren for many more years.
My very best wishes to you both.
Unless you've been there and worn the T Shirt you can never ever understand the pain, the worry, the hope the suffering and now in your case the absolute feeling of devastation and the wonder was it all worth while. And I think the answer to that is YES, while ever there's a chance there's hope, and you have to be with them pick them up when their down and hold in so much of your own knowledge and fears from them and your Children. And the Oncologist can't really give you any comfort because they know there are no certainties only uncertainties with SCLC.
My biggest fear in all of this since the CT scan showing no evidence of the Disease has been Brain or Bone Metastases as we both know and understand that means No Hope.
I'm glad I've been of some comfort to you and I Thank you most sincerely for your best wishes and kind words and hopes for Mrs M to continue in Remission for many years to come as Cure is something you never can expect with SCLC.
I know all to well long term remission is a big ask and virtually impossible unless new cures and treatments presently being tested and developed sooner rather than later are used in everyday treatment.
Mrs M is a thirty plus year sufferer of the Chronic Autoimmune Disease Rheumatoid Arthritis, the Diagnosis being changed to Lupus 7 years ago and who knows if this contributed to her SCLC, or even if its slowed the spread.
Mind by looking at her you would never guess, and I'm hoping and praying that her strength and determination in battling a autoimmune disease since 1983 and refusing to give in to it will give us a fighting chance in beating this one.
And for that we will have to be extremely Lucky.
They say Fortune Favors the Brave and I have one Brave Little Lady,just whether that's enough we will have to wait and see andfor that we are like all Cancer suffers in the Lap of the Gods.
Kindest Regards & Best Wishes
Hello !great to hear the good news . That's making me feel so much more positive that I can live with my sclc . Similar ,never smoked in my 57 years of life ! Got stage 2a but had first chemo session last week with another 3 to go . Thanks for your input .
Hi Goldstar 10,
Good luck with your treatment and stay positive, it's a tough one to beat but " It Can Be Beat ". And yes statistics say it has a reputation more than most to return, but live in the hope that if it does Second line Chemotherapy will be successful again, and it will be buying time before Immunotherapy Treatments presently under development will be available to cure it or at least control it as a Chronic disease. Huge strides are being made every day in Cancer Treatments as one out of two people rising to two out of three will contract some form of cancer by 2020.
And the frightening thing about Lung Cancer is that presently in the U.K. 6000 people out of 45,000 are diagnosed with it each year who are long term non smokers and never smokers. And the majority are " Women ". It's always been assumed to be a smokers cancer which it is in a lot of cases, but I have been shocked by the amount of women in The Chemotherapy Suite who like my wife who is 60 and a 27 year non smoker or similar age never smokers are being treated for Lung Cancer.
I'm sorry to hear of your diagnosis of SCLC but, if my mum is anything to go by, the treatment is very effective with early detection and the results are very positive.
I wish you the very best of luck with your chemotherapy treatment. I'm so pleased that you now feel more positive and hope that my mums response, as well as Mrs M's response to the treatment has given you hope, something we all need at times like this.
Stay positive and good luck.
My very best wishes to you.
In limited-stage disease, the likelihood of responding to chemotherapy and radiation therapy is high, with significant tumor shrinkage noted in 80 to 100 percent of patients, about half of whom have a complete response (no remaining evidence of the cancer by either physical examination or scans).
There is more detailed information available
Hope this helps,
All at the Roy Castle Lung Cancer Helpline
Hi Roy Castle Helpline,
Many thanks for your reply and details of where to find further information on SCLC and its Response to First Line Chemotherapy.
I already have details of the update.com/contents/small website from my detailed research over the last three months.
Keep up the Good Work.
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