New on here and in need of support

[catlady91]

Hi there, in February of this year my mum was diagnosed with stage 3B squamous cell non-small cell lung cancer. It's been an emotional roller coaster. The doctors have been very positive about my mum. She was given aggressive chemo and radiation which she completed 2 months ago and recently started on immunotherapy. Her scan shortly after finishing radiotherapy showed a reduction in the tumour by 22mm (almost half). The doctor said that it's excellent news. The doctors also seem so surprised that my mum looks so well for her age and is in such good shape (she turns 71 on Sunday).

My mum is doing really well. She's got her energy and zest for life back. She's very positive and is determined to beat the cancer. I was positive as well, but I'm scared to be too positive. I'm scared what if the immunotherapy doesn't work and if it does, the effects won't be permanent.

The doctors said that they're aiming to cure my mum, which is incredible as typically stage 3B lung cancer cannot be cured. I've been reading a lot on the internet about lung cancer and it's made me feel very anxious. A lot of the articles contradict themselves; some say stage 3B lung cancer can't be cured, others say it can. Others say squamous cell doesn't have as good a prognosis as other cell types, others don't really point out that there's a difference between adecarcinoma and squamous cell. Other sites say that there's been big advances in treating lung cancer especially at an advanced stages, whilst others say that the outcomes are still poor.

This makes me feel more anxious. Would they offer my mum immunotherapy if they didn't think that her cell type was compatible? The immunotherapy they are giving her is part of the treatment plan and isn't experimental.

I want my mum to live for as long as possible. We joke that she'll live to 102. I really hope that she does (obviously as long as she's not in any pain or suffering). If the doctors are aiming to cure her, does this mean that they hope that she'll be cancer-free and it won't come back? I love my mum so much; she's all I have. My beloved dad died when I was young and my brother and sister in-law don't really care about me. I don't have much family. I have some friends, but most of them don't understand.

[catlady91]

Just to note that I am from the UK. I hope that this doesn't matter. I know the US is more advanced in treatments. My mum is being treated at a cancer hospital that has an extremely good reputation and is one of the top specialist hospitals for cancer.

[Tom Galli]

Catlady,

Glad you found us and now relax. We've got lots of experience with lung cancer treatments and collectively, we've had them all.

First, let me ease your mind. Immunotherapy is a very new form of lung cancer treatment. It is also curative and therefore effective. It can produce no evidence of disease or NED, our treatment goal. We use NED rather than a cure because lung cancer often recurs after successful treatment. Various types have higher recurrence rates but all lung cancer is prone to recur. That is why I still see a medical oncologist 2 times a year after 16 years of surviving Stage IIIB non small cell lung cancer (NSCLC), subtype squamous cell. In my treatment history, there are 4 recurrences after "successful" treatments. 

To answer your question about the offer of immunotherapy: no they would not offer immunotherapy as a treatment method unless your mom's cancer biopsy displayed certain levels of PDL-1. Here is more information on immunotherapy and lung cancer. Immunotherapy is a new and very effective treatment for lung cancer. When it works, it can result in NED. Unfortunately, even with the right tumor markers indicating suitability for immunotherapy, it does not always work in everyone.

Part of our mission is to assist caregivers and many of our members perform that important role. I'm sure they will chime in with tips and tricks on helping your mom with treatment. More questions? Fire away!

Stay the course.

Tom

[catlady91]

Dear Tom,

Thank you so much for your reply; it has given me a lot of hope. It is incredible that you have survived the exact same lung cancer that my mum has. My mum's doctors seem very hopeful.

The only thing that concerns me is the recurrence of the cancer. Do you mean to say that you had 4 recurrences? How did the doctors treat your recurrences and what was the interval between the recurrences? Do you know the likelihood of lung cancer occurrence in general? Also when you were first diagnosed what kind of prognosis were you given and what made you beat it? My mum is extremely positive that she can beat the cancer.

Sorry for all the questions.

Monica 

[catlady91]

Also I saw on one of the posts that you had part of your lung removed. My mum isn't eligible for surgery. Is long term survival possible even if you don't have surgery?

[Tom Galli]

Monica,

In three of the four recurrences, I was treated with the only drug available in 2004 through 2007: Taxol and Carboplatin. The fourth recurrence was treated with a newly approved stereotactic body radiation therapy or SBRT. There are different trade names for SBRT and mine was called CyberKnife. This was in March 2007 and it finally arrested my cancer. 

The recurrence interval was about 6 months after each treatment ended. So I’d have a clean scan after 6 infusions of chemo (3 weeks between each infusion), a couple of clean scans, and then a recurrence. 

Recurrence probabilities vary from person to person and type and subtype of lung cancer. For example, small cell lung cancer nearly always recurs.  NSCLC probabilities are about 33% for adenocarcinoma and squamous cell diagnosed at stages I through IIB. Stage IIIA & B have about a 66% probability of recurrence. These percentages are from a National Cancer Institute study published about 4 years ago. I’ve not seen anything more current and this points to the problem about citing statistics (recurrence and survivor) in lung cancer. Our situation has vastly improved with the introduction of new drugs and treatment measures. 

What made me “beat it”. Luck and God’s will I suppose. My doctors kept me alive long enough for a therapy to emerge that finally worked. 

I once had a prognosis of about 6 months of life. I’m not trying to market my book but Amazon has it in the Kindle Store. It is called Scanziety and it covers my entire treatment history and life after. But my survival journey will be vastly different than your mom’s. As I said, much has changed in treatments and successes. 

Last you asked if long term survival is possible without surgery. Yes and many of us experience long and near normal lives after non surgical treatment. I’m sure some willl sign on and share their story. 

Stay the course. 

Tom

[catlady91]

Thank you so much for your support and comforting words. Your journey is incredible and I will check out your book. I just have one more question. At which point did you have surgery? Usually surgery is not an option for stage 3B lung cancer and sometimes not even stage 3A.

Monica

[MarieE]

My husband was diagnosed with squamous NSCLC last fall and had an upper left lobectomy. At that point he was diagnosed as Stage 2b. His scans were clean in January but by spring the cancer was back in additional areas. He has been having a series of Truebeam radiation sessions to target a mass on his chest wall and the original plan was for chemo and immunotherapy for systemic treatment. That changed with the recent approval of Trabecta to target the cancer based on a particular mutation present with his cancer (i.e., a mutation that leads to MET exon 14 skipping). He is now on his third day of taking the medication.

Health and age-wise, my husband sounds similar to your mum. Hang in there. I know how stressful it is as the caregiver, especially nowadays. On the plus side, there are more and more encouraging developments in the treatment of advanced lung cancer.

[catlady91]

Thanks for your reply Marie. Did your husband have an operation to remove the cancer when it came back?

It seems like a lot of new treatments are coming out. I got an update that keytruda have been approved for squamous cell lung cancer. There seem to be a lot of options and hopefully there will be more and more.

Wishing you and your husband all the best.

[Babs]

Monica,

I was diagnosed in August 2019, stage 3b NSCLC squamous cell and not eligible for surgery.  I did 6 weeks of chemo/radiation and am now going to my 16th treatment of Durvalumab next week.  My Oncologist said 2 scans ago that the original tumor (which was 6.5 cm) is now just scar tissue with no cancer cells present, so I guess NED ( no evidence of disease).  I feel pretty good physically with minor side effects from the treatments. I know there is a high chance of recurrence, but I will face that fight again when and if that happens.  You’re Mom has the right attitude and there is every reason to believe you have many years together ahead of you.  Chin up,

Babs

[MarieE]

My husband did not have surgery when the cancer came back as it had spread too much. Also, the mass on his chest is large, and the surgeon felt there would be no way to get clean margins. If the other treatments don't help with the discomfort from it, we plan to follow up with the surgeon again. We realize the goal wouldn't be to eliminate the cancer, but we hope it could make it less painful.

And yes, it seems that new treatments are being approved frequently these days! If not for the Trabecta, the plan was for carboplatin and Keytruda.

[catlady91]

That's great news Babs; I hope that your success continues. I like your positive attitude. It seems like there are a lot of treatment options even if the cancer does return. It's hard to find exact statistics of recurrence likelihood. Stats only seem available for ovarian cancer (where the recurrence rate is very high; a lot higher than lung cancer) and breast cancer. Anyhow despite recurrence there seem like a lot of options. My mum knows a lady who has stage 4 lung cancer; she's had it for 8 years with many recurrences and is still alive and doing really well. I hope that these advances keep on coming. I hope that this will be the era of breakthrough in treating cancer, like with AIDS. 

My mum had her scan only 3 weeks after finishing radiotherapy and the tumour shrunk by half; the doctor said that it's excellent news. She's started immunotherapy as well. She has her next scan at the end of July which I'm nervous for; however we're aware of pseudo-progression where the tumour may appear to have grown, but it really hasn't- the immune system has produced an inflammatory response. All these scans and appointments fill me with such dread. 

[catlady91]

Marie I hope that your husband will do well. Has the cancer only spread within the lung or gone to distant parts? I hope that the treatment works and that the cancer, even if it can't be cured, can be kept under control for a long time.

[MarieE]

I know it's in several lymph nodes but it didn't seem like they could fully determine the breadth of the spread from the PET scan. That said, they said there was no evidence that it had spread to the bones and the brain MRI came back clean.

[catlady91]

Hi Marie, it's good that at least it hasn't spread beyond the lung. There's still a chance of getting rid of the cancer. My mum is stage 3B and the doctors said that they're aiming to cure her. If the cancer is contained in the lungs only, the cancer will hopefully be easier to control and maybe even get rid off. Hopefully the treatment your husband gets will work.

[MarieE]

That is our hope. It's confusing since his oncologist said he was now Stage 4. Hopefully we will get a better understanding of the situation with his next scan.

[catlady91]

Staging can be really confusing. My mum's tumour wasn't that big (a bit less than 4cm) but it was still classified as T4, N2, M0.  I thought that stage 4 is when the cancer spreads outside the lungs. Hopefully the doctors will give you a better idea of the staging and they still have lots of treatment options for your husband.

[MarieE]

Agreed! Not sure if they classified it that way due to the tumor that is protruding on his chest wall or due to something else they saw on the scan. Either way, I'm glad that it doesn't appear to have spread to bone or brain at this point. And I'm very encouraged by all the recent advances in targeted therapy.

[catlady91]

Keep positive! Please keep me updated on how your husband is doing. 

[BridgetO]

Hi catlady and welcome. I had a lobectomy and was diagnosed with stage 1a adenocarcinoma in November 2016 and I'm NED on that one. I'm also NED on breast cancer (stage 1a) from 2008 and on endometrial (stage 3 and aggressive) from 2011. 

In looking at statistics about survival and recurrence, there are two things to keep in mind. First, everybody's different. Statistics deal with a whole group of people but each of us is a case of one. My doctor described my prognosis for my endometrial cancer as "dire", but here I am today after 8 years NED and with no recurrences. Second,  by the time we see statistics, they are out of date. Many statistics are based on 5 year survival or recurrence figures, which means that the people they're counting were diagnosed at leat 5 years ago. In the last few years there have been a whole lot of new treatments approved,r for lung cancerm so we don't have the figures yet on them, but undoubtedly people on average will be surviving longer and some much longer. So you have every reason to be hopeful for your mom.

Bridget O

 

[catlady91]

Thank you for your reply BridgetO. It's amazing to hear these incredible stories. They give me hope. I try not to be too get my hopes up too much and be realistic, but it's always important to have hope, no matter how big or small. Without hope nothing in life would ever be achieved.

I still have a lot of worries especially as statistically lung cancer doesn't have such a good outcome compared to other cancers. I try not to get too hung up on statistics as I know that some of them are outdated or just estimates based on previous data of how patients in the past fared with a particular cancer. I want my mum to live so bad; she has so much life in her, at least another 20 years! The doctors treating her seem hopeful. My mum asked the oncologist if it's true that lung cancer is one of the hardest cancers to treat and she said that it isn't. She said that they're aiming to cure my mum; I really hope so! I'm scared, but I don't want to lose hope. My mum is so positive.