Curative intent vs controlling the cancer

[catlady91]

My mum spoke to her doctor who manages her immunotherapy over the phone as she had some more questions. He said that she showed an excellent response to treatment. I asked if it's possible that the cancer will go away for good. He said there are no guarantees and my mum will have to have life long check ups and that because my mum didn't have surgery it wouldn't have gotten rid of all of the cancer cells.

My mum's oncologist said that they're aiming to cure my mum but her immunotherapy doctor sees it more as managing the cancer and checking it to see if anything grows and treating any progression as early as possible. 

Why do some doctors have different views when it comes to curing cancer and managing cancer?

[LexieCat]

I'm not sure it's having different views of what is likely/possible to happen so much as it is a difference in how they express it to patients. I'd bet both doctors hope the cancer won't recur but acknowledge the possibility that it will. The one doctor's statements are more aspirational--this is what we're hoping will happen--while the other doctor is more forthcoming about what might happen and how they will deal with it if it does. "Curative" treatment represents a goal, not a guarantee.

Remember, my "curative" surgery didn't cure me. It was my best shot at a cure but in my case it didn't work out that way.

 

[catlady91]

Well put LexieCat. I hope that you are doing well. Have you started treatment yet?

It seems that some doctors aren't in agreement about "curing" cancer. Some people say once you have cancer you're never really cured. I think for everyone who has had cancer there's always a chance it will come back. My brother says that his friend who had skin cancer 15 years ago still has check-ups even though he hasn't had a recurrence since. My neighbor who had breast cancer and had a lumpectomy has to take tablets. 

The immunotherapy doctor implied that surgery equals a cure, but like you said and from your own experience, surgery doesn't always equal a cure. 

The immunotherapy doctor still told my mum that this is news worth celebrating because her response to treatment was excellent. 

[catlady91]

Unfortunately we won't be able to get a cat until my mum finishes treatment as the doctor said my mum's immune system will still be weakened and getting a kitten at the moment isn't a good idea because they carry germs and bacteria.

[Steff]

Boo to waiting on getting a kitten!!!  🥴  But I guess I can understand what the doc is saying 😩 Maybe since she has to wait to get a kitten, she should get two when she is allowed!

I know it's hard not to get caught up in cure vs. controlling cancer, but I think it's important to just accept that there is no official "cure" for lung cancer.  I was heart broken when my mom had her lobectomy and the the surgeon came out to say that there was more cancer than scans showed and despite his best effort, he was unable to remove it all.  I was sold on the idea that she would be "cured" after her lobectomy (so I was told by docs).  I feel that the idea of being cured of something can make us complacent.  Maybe we wouldn't go in for scans as regularly or our docs may not prescribe scans as often.  Regular, follow-up scans have saved so many people's lives because their lung cancer recurrence was caught sooner rather than later, as in the case with my mom.  So, although your mom may not be "cured", her lung cancer may very well be controlled, just like so many other chronic conditions.  Yes the treatments, many times, are not fun, but it allows our loved ones to LIVE their LIFE (and get kittens!)

[catlady91]

Steff how long ago was your mum diagnosed with lung cancer? Can people with cancer that cannot be "cured" live just as long as people whose cancer can be "cured"? I guess it's better that the doctors do regular check-ups and spot any recurrence early rather than declare someone cured and withdraw them from regular care and check-ups and the cancer come back and be found too late. 

[LexieCat]

I think you can only declare someone "cured" when they've died of something else without there having been any signs of recurrence.

And even then you can't say there weren't cancer cells floating around somewhere.

Look, diabetes doesn't get cured and people live with that for decades--or they can die of it. Same thing with heart disease and other chronic illnesses. You can die of it or you can be treated and live with it. Could it eventually contribute to your death? Sure. My dad had a pacemaker after suffering a massive heart attack over 20 years before he died--at age 88 after aspirating vomit when he had a stomach bug. He was never cured of his heart disease, but he lived a good, long life.

 

[Sabacat]

Well said!

[LUNGevityKristin]

There is a term "No Evidence of Disease" (NED).  If lung cancer can never be cured, NED is the next best thing.  People can go years as NED but they still get scans and stay in contact with their team of doctors to make sure if something new pops up, they are on top of it.

[Steff]

catlady91-

My mom's original diagnosis will be 5 years ago in November, her recurrence was about 4 years ago.  She was originally diagnosed as NSCLC stage 1a and we were told a lobectomy would successfully remove the cancerous nodules and ultimately "cure" her, although periodic scans would be needed to ensure the cancer did not return.  Unfortunately, there were cancerous lymphnodes that were unseen in any scans and despite the surgeon's best efforts and 8 hours of surgery, he could not remove 1 of the lymphnodes.  So her staging went from 1a to 3a in a matter of hours and there was no possibility of a "cure".  I was hung up on the concept of "cure".  The more I came to understand lung cancer, I began to view it as a chronic condition rather than something that can just be cured.  My mom has lived with other chronic conditions too - rheumatoid arthritis, diabetes, and chronic pain.  All are monitored and treated as needed - just like her lung cancer.  I think I was so caught up with the idea of a "cure" because I feared that my mom would die from lung cancer complications.  Although I cannot foretell the future, lung cancer is the least of my mom's concerns when it comes to her health.  She continues with regular, 4 month scans and if something comes up, she will address it then.  

In what I have seen in the past 5 years, people can live just as long as those who have been "cured" as those who are just considered NED (no evidence of disease) or those whose cancer is controlled by treatment.  Many of us have had to revise what our perceived idea of what beating cancer means.  For me, it has changed drastically - I thought that since my mom was not "cured" she would surely die of lung cancer and that is not the case these days.  But now we celebrate no evidence of disease and the idea of a cure is long behind us.  I have often said this - Gone are the days that lung cancer is an automatic death sentence.  I lost 3 loved ones in the days where lung cancer was a likely death sentence and have seen how outcomes for those diagnosed with lung cancer have changed dramatically.  

Please, don't get caught up in cure vs. NED, vs. controlled.  At the end of the day, all that matters is that your mom is living her life (and that includes getting a kitty 😁).

[catlady91]

Thanks for your answers everyone. It's hard at the moment as my mum feels disappointed that the doctor hasn't said that she's NED yet. The whole tumour is gone but there's an extremely small remainder left behind which the doc says could be inflammation or cancer cells. I've heard that even when someone is deemed "cured", cancer cells can be left behind even if they're dormant. The doctor said that immunotherapy should take care of any cancer cells left behind and help switch them off. 

It's a stressful time despite good news. Cancer is such an emotional journey. I'm so glad that I've found this group full of positive people; it's so hard to find groups like this in the UK. I feel like there's so much hope for lung cancer and the fact that cancer can be seen as a chronic disease like diabetes is incredible. I guess health is chronic anyway. Sometimes you feel well, other times you don't. My mum has had diabetes type 2 for many years and it's extremely well controlled so if there's hope for diabetes, there's hope for lung cancer. 

I would love a cat so bad 😢. Life without pets for me is like a life without friends. For the time being the neighbors cats are my temporary pets. There's this lovely ginger cat who is like a dog and follows me everywhere and loves to roll around by my feet. There's another black cat who is very stuck up and acts like a king. He'll let me pet him for a bit and then he'll let me know that I'm dismissed.