Small Cell Lung Cancer Extensive

I was diagnosed with SCLC in November 2019, I started treatment in March 2020 and had 8 sessions of chemo, in November my treatment was stopped but some medication continued steroids, anti sick tablets, After a PET scan in February this year I was told my lung was clear but they were concerned about a presence in one tonsil and would be sent for more tests, up to now nothing, I see the consultant in June, I do have Ataxia which has been affected by the cancer leaving me almost unable to walk, the point is I feel like a cheat as it has all seemed too simple, one minute I had it the next it's gone yet you read so much of the suffering by some people, I am almost embarrassed when somebody asks about my wellbeing, am I being harsh on myself?

Hi Laura

So very sorry that you have cause to be on here.

I was 53 when I was diagnose with SCLC back in 2011. Mine was classed as 'extensive but limited': i.e a lot of it but only in the one lung.  Cancer aside, I too was very fit and healthy and a total 'hospital virgin'. Although it didn't feel like it at the time, this put me in good stead to get through the treatment plan, I didn't feel hopeless or scared; however when on my own I did have periods of mourning the planned life I wasn't going to have  regardless of the outcome of the treatment.  Like you I was determined to take all the treatments offered to me.. Sheer bloody minded stubbornness was my go-to approach.

As a former competitive athlete you will know what it takes to dig deep within yourself to  get through training/competition.. So, you need to again dig deep to get through this. 

Don't be afraid to ask your cancer team about the possibility of joining a trial or other treatments.

Myself and others on here will gladly answer any questions you may have about getting through this. 

Try to stay positive.

Kegsy x

Hi Athywhite,

Thank you so much for telling me your story. It helps to talk to others who have gone through similar experiences. I hope that your meeting with your consultant in June brings good news regarding your current condition and that you continue to feel well and don't be harsh on yourself, as I'm sure you deserve some good feeling and luck.

Laura

Hi Kegsy,

Thank you so much for telling me your story. I wish my cancer had been limited and at the moment I feel like it is just exploding all round my body. There is certainly some truth to this, but my mind is in overdrive! I keep feeling like nothing is happening treatment-wise fast enough, then time is of the essence, which throws me into panic mode. From being a cynic regarding mindfulness in the past, I find I'm looking into it much more and trying to find strategies to calm me down, when panic sets in. 

I feel as though the sheer blood minded stubbornness approach can be my only approach, but I am so scared too. I would do anything just to live longer.  I'm due to start chemo and immunotherapy soon. Could I please ask, how did you feel during chemo? Did you lose your hair and if so, did you choose a wig? Do you have any advice about wigs?

Laura x

Hi Laura

Treatment never seems to start soon enough when you have been diagnosed with cancer; everyone on here will have had those same feelings of frustration. Please take some comfort that there is a need to do all the testng, scans etc in order to put together the best treatment options for you.

Back in 2011 there were no immunotherapy options for SCLC, so  my treatment was chemo alongside high dose radiotherapy. My chemo was the standard for SCLC i.e the cisplatin and etoposide combo. Each cycles was 3 days, with each cycles being every 3 weeks. The 33 days of radiotherapy started on the first day of the 2nd chemo cycle.  I found the chemo relatively easy in as much as no sickness or upset tummies etc. It did however  have a negative impact on both my red and white cell counts. Both my 2nd and 3rd cycles were delayed by a week due the blood counts.  This is quite normal and does not impact on the overall effectiveness of the chemo.  After cycles 3 &  4 I did have to blood transfusions; 2 units each. Not a problem and the benefits are instant.

Yes, my Onc warned me that on the chemo combo the hair loss would be 100% top to toe, and would happen after the 2nd cycle. So in the week before cycle 2, my hairdresser/friend cut my longish hair to approx 1.5 inches long. This was ideal as when the hair loss started, every time i went to the bathroom I ran my fingers through my hair and what came out was quickly dispatched to the bathroom bin. If you have been told you will lose your hair, please don't get it shaved off as if it is too short it doesn't come out easily and can become quite uncomfortable.

Yes I did go down the wig route. I was fortunate that my specialist cancer hospital had a wig dept, so I got kitted out after one of my many pre-treatment tests.. Ask your Onc  (or GP) for a wig prescription. You are entitled to one free wig on the NHS. I chose a wig that I knew my hairdresser would be able to style to mirror my natural hair style, so the switch to the wig was fairly seamless.. Make sure you also buy the wig shampoo and conditioner plus the wig fibre oil if you choose a synthetic wig. Don't bother wig brushes as they are useless. I bought a couple of the smaller Tangle Tease  brushes, which I still use on my own hair.. The choice is yours; wig or no wig, same style or different style/colour. Have some fun with it!

 Hope this helps a bit.

Kegsy x

Hi Kegsy,

Thank you so much for all this information. I can't tell you how much I appreciate it . The chemo experience is good to hear about and the wig tips will help me a lot soon, when the time comes.

I wondered if you also had any advice/ knowledge regarding trials or natural interactive therapies to pursue alongside the conventional drugs? I'm worried about deviating from any treatment plan devised for me by the Oncologist, to follow either of the above.  I have to have a brain scan tomorrow, so am feeling incredibly scared today! Sorry to ask so many questions!

Laura x

Hi Laura

Ask away, although I can't promise to be able to answer everything!

Access to cancer trials has to come via your cancer team, as there are very strict protocols attached to approved trials. Not sure what you mean regarding natural interactive therapies, however you are right not deviate from the treatment plan without the OK from your cancer team. At The Christie (my cancer hospital) they have a Complimentary Therapy team who  help patients develop coping strategies to deal with the stress/phobias that going through the treatments can magnify. My cancer caused nerve damage in my limbs, made worse by the chemo. Once I had built up my post treatment immune system, I had months of weekly acupuncture which was provided by the Complimentary Therapy team.  Check to see if your hospital has a similar team.

Brain scans for a SCLC diagnosis is the norm, I had one as part of my pre-treatment plan testing. I guess that your brain scan will be an MRI scan?  If yes, then this is different from a CT scan. It will take  a bit longer and is a lot noisier. If it is the thought of the scan that scares you, please do let the staff know beforehand and they will be extra attentive/re-assuring.  

As always, hope this helps a bit.  Good luck with the scan; just close your eyes and focus on a happy place or memory.

Kegsy x

Hi Kegsy,

Thank you for your reply.  Again, so incredibly helpful.  I had my brain scan on Sunday and yes, it was an MRI. This time I found slow breathing  and as you said, imagining that I was going to sleep, eyes shut, definitely seemed to help with the claustrophobic feelings I experienced last time.

I'm dreading Thursday's discussion with the oncologist, but I know I have to get on with treatment as soon as possible, so I just have to dig deep, as you already said. I will bear all you have told me in mind and thank you again for your wig tips as I look into that next!

I hope you won't mind if I get in touch again soon as I go through the next stage. I find it so helpful.

Laura x

Good luck Laura, you are in the best hands possible, head up and stay strong, everything crossed for you

Ricky

Hi Laura

God luck for Thursday. I know it seems daunting but hopefully getting a treatment plan at this appt will help you to focus on going forward.

Of course you get back in touch; I will try to help in any way I can.

Kegsy x