Mum has Lung Cancer...Help please

[Clarry69]

Hi all

We had the devastating news on Tuesday that my 'young' 71 year old mum has lung cancer. I've always lived within a mile of my parents who have been happily married for 51 years and I've never had to visit either in hospital as neither has ever had more than a cold/minor ailment. I am a 47 year old happily married man with 2 adult children (25 and 21...both still at home) and live in Essex, England.:      

My parents being very independent went for the final results of the numerous tests she had had after suffering with a constant cough for weeks  - CT scans, Lung capacity, Biopsy etc without any of us with them and gave us a what seemed very little information other than it is terminal lung cancer.

I managed to get her actual hospital letter with the results and they read as follows:

T4 Invasion possible Mediatinum,      Squamous Cell Carcinoma,      T4 N2 M1b 

I know Google can be a wonderful thing but I'm sure its not too clever for things like this. I understand the meanings behind the T4 N2 M1b but have a few questions I hope you can help me with.

Is this totally untreatable? when my parents told me it seemed like it was a death sentence for my mum that would be very quick, of course we all are totally devastated.

The Oncologist has not arranged a treatment plan but this is urgent so has to be completed within 2 weeks, surely if this is terminal should the treatment, if any, begin asap or does cancer not work this way?

Can you give me any advice or guidance on what to expect, how to act, the best way of supporting mum and dad?

What is going to happen now?

I know there are no miracles, and to be honest i am not a very strong person but i understand i have to be there for them whatever the future holds.

TBH I am struggling.

Thanks in advance for reading this and any input you can give. (please do not come back with religious things as that is definately not my thing, thanks)

 

[Susan Cornett]

Good morning. I'm sorry about your mom's diagnosis.  It's never easy to hear either as the patient or the family member.  First question would be to ask if there has been any genetic testing to look for mutations.  Targeted immunotherapy can be effective when there is a mutation. There may be treatment options available but if your mom's doctor isn't pushing any of those treatments, ask why.  Treatment can be any number of options or combinations thereof: surgery, chemotherapy, radiation.  There are a lot of people on this board who have lived with late stage cancer diagnoses for years, well beyond the "norm" for the diagnosis.  That said, please understand that cancer treatment is tough, physically and mentally, on the patient, the caregiver, the family.  It is a battle best fought by all involved. 

Have you encouraged your mom to get a second opinion?  It's always a good idea and might give a different perspective.  

I hope you find some answers on this board and within the responses.  Please keep us posted on her progress.

[Tom Galli]

Clarry,

Your mom has stage IV, non-small cell (NSC) Squamous cell, lung cancer (LC).  To your questions:

It is not "totally untreatable."  It can be treated with conventional chemotherapy and that is often successful in extending life.  Moreover, as Susan indicated, there are immunotherapy advances that are just emerging from research that are proving useful in treating Squamous cell NSCLC.  Here is information on Squamous cell LC, and here is information on immunotherapy.  Your mom's age and general health may be complicating factors and her doctors are likely aware of that complication.

Two weeks or longer is not an unusual wait time for a treatment plan.  I'm not familiar with the UK medical system but it took about a month for me to navigate the diagnostic phase of my disease.  After a successful treatment that resulted in "no evidence of disease" (NED), we scheduled an extensive and expensive celebratory vacation.  Shortly before vacation day, a scan showed a recurrence and my oncologist advised we enjoy our trip forecasting no problem with a month delay in addressing the recurrence.  So, I'd say a month to no more than 6 weeks to start treatment is a US norm.  Again, I don't know about the UK medical system, but I don't think "first line standard of care" (the treatment administered to most all stage IV, NSC Squamous cell LC patients) will be hard to arrange.  One exception, however, is complicating medical conditions.

Advice.  Your mom will almost certainly receive chemotherapy as a treatment.  Understand that chemotherapy often extends life.  Help her to enjoy the extension. No one knows how long of an extension lasts.  Many of us were exactly where your mother is and we are still living the extension.  I've found in lung cancer, that persistence is required.  I had four unsuccessful treatments in the course of 3 years until the fifth yielded NED.  I wasted a lot of time fretting during that 3 year period when I could have been living.  Help your mom enjoy life.  

Guidance.  Read into the disease.  Once treatment is administered, there will be side effects to deal with.  Fortunately these are cyclic and will appear about the same time after each infusion.  Help your mom chart the onset of side effects.  My doctors advised starting my nausea medication shortly before the onset of nausea.  I did and I didn't experience nausea.  So, help your mom by creating her "cancer calendar".  Record her treatment days, post treatment scheduled tests (blood work), diagnostics (scans in treatment) and date and time of each side effect presentation.  Cancer treatment is a scheduling exercise.  Help her create and maintain a schedule.

More guidance.  Read steps four through ten.

There are miracles.  These are events where cancer stops growing without medical intervention.  They are rare and unexplainable.  There are no miracle cures so avoid falling into that pitfall.  But hope is not a miracle cure but I believe it essential to successful treatment.  This explains my belief of the importance of hope in lung cancer treatment.

We wish the best for your mother.  You'll likely have future questions and this is a good place to ask them.  And, to reinforce the importance of hope, if I can live, so can your mom.

Stay the course.

Tom

[Clarry69]

Thanks for the prompt replies Sarah and Tom.

My mum has her first treatment appointment on Thursday with the Oncologist. Luckily I've been able to reschedule work so I can go along and ask questions and take notes.

I will take your advice and read more into the disease even though I keep coming across words I've never seen before let alone know the meaning.

Any more advice or suggestions are more than welcome.

Thanks again ?

[Clarry69]

Hi again

We've now seen the Oncologist for a treatment plan and the various options were discussed for moving forward.

The first course of treatment will be 2 x 5 day sessions of targeted radiotherapy, the first starting next Monday through to Friday. Mum's been and had another CT scan and had the area(s) that need doing tattooed for the treatment.

They have said that Chemotherapy is another option but didn't go into detail. They also said that Immunology was not something that would be used at this stage although it could be used later, especially if in a 'trial' form.

She has been prescribed CoCodomol, Low dose Morphine that she can use if required, Steroids for use during the Radiotherapy and a Laxative to counter the CoCodomol.

Luckily Ive been able to schedule work again so I can transport her to the appointments. I'm just hoping its not too bad for her, what ive read it seems the side affects are not terrible.

Onwards and upwards.

John

 

[Donna G]

Thanks for the update John.  Glad your Mom has a treatment plan and gets started Monday !

Tatoos are very popular here in the states.  I never thought of getting one but like your Mom I did also to aim

the radiation.  Mine are only a few blue dots.    When I got radiation I also started 2 chemo drugs so my side affects

were from all 3 at the same time.

Keep us posted.  Best wishes.

Donna G

 

 

[AudreyCastle]

This is a devastating news hearing that someone we love has cancer. You need to be courageous now to support the family. My grandmother too had lung cancer. I was very small when she was diagnosed. I remember visiting her in the hospital when she was undergoing treatment by the radiation doctor New York from London to New York in weekends. Surgery can be another option for treatment.