Going to beat this Neuroendocrine SCLC!

[VirginieTheSurvivor]

Hi everyone,

It has been so refreshing and positive to read many of your stories since I was diagnosed yesterday with the rarest form of inoperable extensive neuroendocrine small cell lung cancer.

I am a 38 year old French woman living in Norway and after 1 month of what was believed to be a pneumonia, they found a 7.5cm tumor in my right lung. Two bronchoscopy and one needle biopsy concluded that my left lung was not affected (yay!) but the PET scan revealed bone METS on my pelvis and hip bone.

I’ll start chemo and immunotherapy on Jan 4th, and even though my doctor seemed to have no hope I would ever recover from this, I’m very positive and grateful for what I have at the moment. I have much less anxiety since the final diagnosis, I keep on reading testimonials of other cancer thrives that have gone into full remission or NED and I’m not going to let statistics and scans determine what my body can or cannot do.

While I’m sure my physician is well intentioned (I asked him bluntly “what’s the point of treating me of you don’t believe I can get better? - He said “I don’t know everything and I can’t know how your body will react to the treatment. I have hope, I just don’t want to tell you it’s going to be easy), I’m also a bit surprised at the lack of holistic approach the medical team has been having so far. All they do is really on imaging and test rests. I asked them if they had any recommendations on what to eat or any lifestyle change, they said “no, just continue doing as you did before. Which they don’t even know! I am a non smoker, don’t drink alcohol, have been vegan for 12 years and am training as a natural bodybuilder but they ignore this since the question never came up.

I have gloomy moments when, despite the fact that I have almost zero symptoms now, I’m sad at the reality of the disease, and others when I feel so hopeful and inspired by your stories (I read Montessa Lee’s story and want to kick cancer’s butt just like she did!)

I hope I’ll get to find support on this page, especially when things will get rough.

V.

[Tom Galli]

Welcome V.

I'm very sorry to learn of your extensive stage small cell lung cancer on this otherwise joyous day.

First a suggestion: ask your oncologist about using precision radiation (SBRT--note link: see in particular information at the right arrow [>] How is radiation therapy administered.) for your bone mets on your pelvis and hip. This can reduce your tumor burden, eliminate future pain, and perhaps for in concert with your immunotherapy (Read the right arrow [>] What is the abscopal effect)to systemically attack your cancer.

On holistic treatments, there is nothing wrong with approaches that help you to feel better in treatment. Many use these methods. But be mindful that holistic approaches will not treat your cancer. Your combination chemotherapy including immunotherapy will. Adding precision radiation increases the probability (my view). Combination chemotherapy including immunotherapy is start of art for small cell lung cancer. It is a game changer.

You are correct in mentioning the limitations of survival statistics. Here is my view.

We all have gloomy moments. I had more than 3 years of intense treatments and many that failed. Bouncing back after failure was very hard for me, especially because I thought I was man enough to power through depression. Pay attention to how you are feeling. Depression is common and if signs surface, seek help quickly. The objective of treatment is increased life. No one can predict how long, but we can control how well. Don't let depression limit the well. I'll end with a hopeful message. I was diagnosed in February 2004, and experienced 5 recurrences after supposedly successful treatments, but I'm still here. If I can live, so can you.

Stay the course.

Tom

 

[LouT]

Hello V.,

I can’t add much to what Tom said but I wanted to welcome you to the forum.  Additionally if you do ever find you need support, please take advantage of what is available.   We all need help at one time or another.   Meanwhile we’ll be here to support you however we can.  

Lou

[Rower Michelle]

Hello from me as well—

I’m sorry you find yourself here, we can understand the duality of shock and relief with this diagnosis. Feeling terrible and at the same time knowing what you’re actually dealing with…

I asked the same question of my oncologist, actually for me it was more of a statement- I didn’t want to do chemo if all it was going to do was extend my life for six months.  That was over three years ago.  I’m not sure how the EU health system is structured however here in the US it’s common to obtain a second opinion.  Given how rare your diagnosis is, its worth considering if it’s an option. 
 

On the matter of holistic care- your experience is pretty common.  At first I didn’t understand why there wasn’t anything mentioned or offered.  Today, there are many people part of my care team and each one has a role.  The oncologist’s primary job is the medical treatment, really nothing more.  There’s too much for them to keep track of with the accelerating science.  In fact my doc just had to take his medical oncology board certification again.  He said even the boards are behind and he would have to answer questions the opposite way of his current clinical practice in order to receive the “correct”’score.  

There is a growing number of Integrative Medicine physicians who specialize in cancer care.  It’s a matter of asking the clinic nurses at the cancer center and finding other patients through social media.  

Many of us participate in acupuncture, meditation, Tai chi/Qi gong and nutrition, nutrition, nutrition.  You might want to start with Andrew Weill’s Anti-Inflammatory Diet.  
 

For Chemo/Immunotherapy: There’s a good cookbook- Rebecca Katz: The Cancer Fighting Kitchen.  It’s geared to American cooking but you might be able to locate a EU equivalent  

Managing stress will be important-take an inventory of your relationships and think about who you find joy with.  Toxic relationships are not helpful in fighting cancer   

We always recommend staying away from Dr Google-the data is old and the information is not helpful. 
 

Please ask us anything—- we will be here for you  

Michelle

 

[Karen_L]

I’ve been interested in writings that discusses the impact of a positive attitude on cancer remission. I spent some time looking for current research about it and ended up writing about it here.

My doctors don’t talk about nutrition, supplements, etc— I asked why and my radiologist said there’s just not enough data for her to feel comfortable recommending or not recommending a particular path. I follow a Mediterranean diet as was recommended by the nutritionist at my cancer center. 

I can relate to feeling gloomy. I see someone each week to talk through this journey. It helps me feel I’m not overly burdening the people who love me. It’s not an easy path, but we can make a meaningful life no matter what. That’s where positivity comes in for me. I think this is the truth, now I’m learning how to feel this in the face of gloom and fear. 

I wish you well. Glad you’ve found this place. 
 

Karen

[VirginieTheSurvivor]

Thank you so much everyone for your heartwarming answers.

I’ve had a second opinion and both confirmed the SCLC neuroendocrine carcinoma, which was shocking to my doctor.

Dr. Google is indeed a killer when it comes to mental health. I can spend a wonderful day, feeling amazing with hardly any cough, exercising and living a normal life, and then I’d research something on SCLC and what is found out there can be quite discouraging…

My medical team has been fantastic and I’m very grateful for how present they are. My assigned nurses have been calling me every day (I haven’t even started the treatment yet) to have a chat and ask me how I am or if I have any questions.

I wish you all a wonderful lively thriving new year!