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New & Ignorant


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Hi! Like so many other non-smokers, I have been diagnosed with adenocarcinoma.  I was diagnosed in Nov 2017 after a biopsy punctured my lung and I was hospitalized for pneumothorax and subsequently pneumonia.  It was a rough 3 weeks and rough recovery, then I had to start chemo right away...  I call myself ignorant because I chose not to find out my staging.  Both my parents passed from cancer (mom - breast, dad - lung) so I've been to this rodeo before.  My mom's onc told us she had 6 months.  I told him not to tell her and she lived another 13 years!  So, this is why I choose to be ignorant of my full diagnosis and staging.  My husband and I decided it wouldn't change my course of treatment anyway.  I've completed 6 rounds of Alimta + Carboplatin + Keytruda and am now only on Keytruda by itself.  I wasn't ready to drop the other 2 chemos, ( I was supposed to get 8 treatments) but was forced by our insurance company.  My oncologist feels pretty good about it though, because he said he's seen a lot of positive results in his patients with Keytruda alone.  I'm actually doing and feeling pretty well overall - considering my new normal.  

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Hi and welcome! I'm sorry to hear about your diagonsis and that your parents died from cancer. My mom also died from breast cancer. I too am a non-smoker who has had lung cancer. All that's needed to have lung cancer is lungs. Your mom is a good example of the irrelevance of statistics to indiviuals with cancer. They are only valid, if at all, for large groups of people (which none of us is.)Something to be aware of with lung cancer (you probably know this already since you're on Keytruda): New treatments are coming out all the time. New ones are approved reqularly and many others are in clinical trials, which are no longer a last resort, but in mny cases are a choice of treatment earlier in the illness. Since changes are so rapid, statistics (which often are based on 5 year survival rates ) aren't even valid for groups, because of all the new options we have.

I'm glad to hear you're feeling pretty well.

Bridget O

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Hi, Elke.  Glad you found us.  I was diagnosed with adenocarcinoma in 2016 and have had a couple of rounds of chemo, but none of the targeted therapies like Keytruda because I don't have any of the markers.  Are you having any issues with side effects from your treatment?  Hopefully we can provide information and support to you.  Let us know how we can help.

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Hi, Elke, and welcome!  Count me as another one who lost a mom to metastatic breast cancer.  It really sucks--I lost her at age 30, right when my kids were being born, and I miss her to this day.

I echo what the others have said about the meaninglessness of survival statistics as they relate to individual cases of cancer.  Every person, and every cancer, is different.  That said, I think it really is useful to know details about one's cancer.  The type of cancer and staging really can determine what treatments will be most helpful, and without educating yourself, you are basically handing your treatment decisions entirely over to your doctors.  And as great and as dedicated as most doctors are, it's not their life.  

Here's an example.  I was staged as "maybe" a Ib for my lung cancer (my surgeon felt there had been no invasion of the pleura, while the pathologist believed that there had been).  Now, studies have shown that for Stage Ia cancer, adjuvant chemotherapy is likely to do more harm than good.  For Stage II or higher, chemo or other drug therapy is almost universally recommended.  I'm in a weird stage, though--the relative benefits of chemo are still not clear-cut.  There's some evidence that chemo might provide a small statistical (that word again) benefit--for maybe five percent of Stage Ib patients it might improve the chances of survival.  OTOH, there's a good chance that the surgery alone would cure the cancer.  

So my surgeon and my oncologist both discussed the probabilities and pros and cons with me, and I decided I did not want to have to subject myself to chemo for the very small statistical likelihood it would do me any good whatsoever.  My doctors were supportive of that decision, though they would have been fine if I'd gone the other route, too.  

In addition, knowing what kinds of mutations your tumor might be expressing could affect the choice of other drugs that might be tried, perhaps down the line if there is a recurrence, or if new drugs are developed that don't currently exist.  As everyone has noted, cancer treatment and knowledge is evolving all the time.

So of course it really IS your choice if you don't want to know anything about the cancer, but at some point you might want to have some input into how you want to respond to your disease.

Glad you're here--this is a great place for support.

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Thank you everyone for the warm welcome!  I'm glad I came across this site.  I wanted to clarify that although I do not know what my stage is, my husband does and he is my advocate.  He filters/edits my info for me so that I can just focus on resting and getting well.

Susan - I do have some side effects from Keytruda - mainly tiredness and skin problems.  And I think  my kidneys are inflamed. My onc told me that side effects usually come along about 4-6 months into the treatment which is about now.  In general, I've been very blessed to have minimal side effects from all the chemo I've had.

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Hi, Elke,

Welcome to LCSC. I'm glad that you've already connected with some of our members. This community is a great place to ask questions, find information and hope, and share your experience. Please feel free to explore the discussion boards, ask questions, and join in on any conversations that resonate with you. I am also happy to provide you with additional information about LUNGevity's support and education resources if you'd like. Know that we are here for you!

With gratitude,

Digital Community Manager
LUNGevity Foundation

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