"Clean up" chemo post "curative" surgery

[alascerca]

Hi all,

I am new here, and have been diagnosed with stage I adenocarcinoma in left upper lung. Lobectomy Oct. 19th. I am very, very, very terrified. This is my third major cancer and if one counts squamous cell and melanoma skin cancers, it is my fifth cancer. I am terrified to have faith in surgery alone, and know that in many cases some chemo (perhaps radiation? I don't know) post surgery is given as a sort of a security measure. My surgeon doesn't feel this is necessary. I am interested  in people's input here. I am so frightened. I work professionally in the cancer world, and know that it is an insidious, traitorous affliction. Your thoughts appreciated! ❤️ Joana

[Judy M2]

Part of your testing post-surgery will--or should--be biomarker testing to determine if you have a gene mutation that is driving your LC. Post-surgery, it's possible you'll be given some chemo to "clean up" any errant microscopic cancer cells. It has also become the standard of care to be treated with a pill if you have a targetable gene mutation. 

I don't want to say that getting LC is good by any means, but it's fortunate they caught yours at Stage I, when it's more treatable. At Stage IIIB, I wasn't a candidate for surgery and instead had chemo and radiation and now take a daily pill for my EGFR mutation. This month is my 2-year cancerversary and I'm finally NED. I consider myself very lucky. 

Don't hesitate to get a second opinion. I know all the folks here will agree with that. There are many others who've had lobectomies and are doing well today. They will be along to offer you some reassurance and tips and tricks. Take care. 

[LexieCat]

I had a lobectomy in 2017--at that point I was Stage Ib and the doctors said it was almost a coin flip as to whether adjuvant chemo would be of any benefit. Given the odds, I passed on the chemo.

Three years later, the cancer recurred in my other lung and at that point was Stage IV, since it had spread to several lymph nodes and a spot on my sacrum. Nobody could tell me whether this was truly a spread/recurrence of the original cancer or a completely new one. Nobody can say whether having the chemo would have made a difference. I've made my peace with it--what's done is done and I just have to deal with things as they now are. I still think I made a reasonable decision. BUT, had I known then what I know now, I think I probably would have gone with the chemo. It's a bit of added insurance and not that terribly burdensome.

[Roz]

I think it really depends on the results of your biomarker testing as Judy suggested. Having chemo after surgery doesn't prevent recurrence. As LexieCat said, her docs can't say whether it would have prevented her recurrence. In my case, I did it because even though I knew statistically it may not prevent recurrence, I didn't want to think that there was something I didn't do that was offered and therefore blame myself if it came back. So, I did do chemo after two surgeries (lower left lobe removed and then upper right lobe removed). The cancer recurred 8 months after that. What I learned from that is that chemo most likely wouldn't work with the kind of cancer that I have (KRAS G12D.) Had I not done the chemo I would have thought, well, if you had only done the chemo this wouldn't have happened. If your lobectomy is done using VATS, your recovery will be easier. Let me know if you have any questions!

 

Best,

Ro

[BridgetO]

Hi alacerca and welcome. i'm a survivor of 3 cancers also. My 3rd was lung adenocarcinoma stage 1a. I had a lower left lobectomy by VATS (video assisted thoracic surgery) in November 2016.  I had no other treatment, but I have had regular CT scans for possible recurrence. I have had No Evidence of Disease (NED) since my surgery. Lobectomy is the gold standard for early stage lung cancers. If your surgery results in clear margins and no affected lymph nodes, you may not need further treatment. 

My VATs surgery was pretty easy, as surgeries go. Lou T has written a post about what to expect and how to prepare for surgery. I'm not good with retrieving posts from thie site,so I hope someone else will send it to you. I think it will be helpful.

After your surgery, you can review with your surgeon his/her recommendations about the need for further treatment. You might want to ask for a referral to an oncologist with lung cancer expertise to review the recommendation. Or you might independently search for an oncologist to give you a second opinion. You don't need to make a decision about it right now. You could spend your pre-surgery time doing things you enjoy and doing any preparation that will help you be most comfortable in the hospital and at home afterwards.

Keep us posted. Ask any questions you may have and let us know how we can support you. 

Bridget O

 

[Tom Galli]

Joana,

Welcome and you've received lots of good insight from other members. I'll link the post written by Lou that has good suggestions for preparing for and recovering from lung surgery. Here it is.

Stay the course.

Tom

[alascerca]

Dear Judy M2, Lexie Cat, Roz, Bridget O, and Tom G:

I am humbled and touched by your thoughtful, and kind answers, that help me tremendously as I face this new challenge. THANK YOU! 

It is a time of great anxiety as I am also facing economic devastation due to illness (second opinions are not a possibility for me, alas), and I am not quite sure how this is going to end for me. I am a counselor for children who have cancer, now work with adults, also and co-facilitate a large cancer support group (I do not work a regular job any longer, but usually take a few cases referred to me).

I mention this because of the irony of now being on the other side of the equation, and having a hard time accessing the many calming and practical things that I, "counselor Joana" share with others. My upset comes from the fact that this is major cancer #3, and well, one wonders how much more one has to give. It is hard to see a promising horizon when soon, we won't be able to pay the rent;  that cruel reality bores itself into my fretting brain relentlessly. We are in the middle of a complicated move (overseas), and I am living among boxes and mess.

I am frantically working on ideas to help us financially, and of course there will be some type of funding efforts realized. I thought about trying to do regular work again, but it's clear that I am not up to the task. Alas. I have compiled a huge list of entities that offer financial help to patients, and will soon get going on familiarizing myself with those. Please pardon my broaching the touchy subject of finances. I thought about omitting it, but it is something that vastly colors my spirit and outlook, and as such is a significant part of my battle story. I am not soliciting funds here, and would never do such a thing! Should this mention violate posting standards please advise, and I will gladly delete. 

I am being as philosophical as I can about it all. One question looms ever pertinent: Who do I want to be as I proceed with this fight? We all entertain an idea of the person we would like to be, and I am looking at that as I near the proverbial gauntlet. I desire the gift that so many  cancer-stricken children boast: a grace and resignation to what IS, and an honest battle rendered. I do not feel that grace...not yet. I am squirmy and bratty still, like a spoiled child, wanting to simply crumple in a comfy brat corner and wail, "Wahhhhhhhhhh!" Time doesn't allow it, however, and I stumble forth. On a fun note, I found several writing contests, and am going to submit a few pieces. You never know, do you!? One of them is a poetry contest covering the theme of pain. Interestingly, they ask for something "amusing," or self-effacing.  Hmmmmm. Interesting take on pain, and that will be fun to mess around with.

One thing that I always tell patients is that hope is NEVER lost. I have seen the most severe, daunting cases of cancer turn themselves around unexpectedly. I have seen "miraculous" healings and joyous, puzzling returns to "NED" status. I have seen the awe-striking, surprising, and sometimes confounding ability -- and success-- of our amazing bodies to work for us as hard as they can for us. Now, I work to assimilate this truth that I often address with others. To me, a huge factor in this fight is one's philosophical standpoint...the carving-out our "illness personas," if you will, and (I believe that) the choices we make around who that person is going to be directly influence our odds and progress. It can be a delicate path to walk, as simultaneously, we are not to feel "guilty" for not healing. I am aiming at self-compassion (I am merciless with myself) and yearned-for faith, buoyed by kindnesses such as your generous offerings to me, of encouragement and help. 

Haha -- I am going to ask one favor, and that is that I am very computer-challenged, and I am not sure how to access THIS page again. Silly one that I am, I have purposely not closed the webpage, as I am afraid that I will not find it again! Is there a mail portal that apprises us of when there is a response to us? I want to make sure that I remain "plugged in" top you here! I will copy this link and cruise a bit to see if I can figure it out, but I can be pretty thick vis-a-vis computer stuff!

With huge appreciation, I bid you all a lovely rest of your weekends, and look forward to continuing this conversation. ❤️ joana

[LexieCat]

Your thread is under Treatment Forums and then Chemotherapy. Here's a bookmark--you might try that if you're worried about losing your thread: https://forums.lungevity.org/topic/48788-clean-up-chemo-post-curative-surgery/

Once you are logged into the forums, at each visit to the home page (https://forums.lungevity.org), you will see any forums with unread content highlighted in bold print. If you click the forum, the threads with unread content will be bolded. That's the way I normally read the forums--I can tell at a glance what's been posted since last time I looked. 

 

[BridgetO]

 Hi joana,

First, let me reassure you that talking about your financial issues isn't a violation of our guidelines. You'll find that it's a common issue since cancer isn't a cheap illness to have.

One thing that's really helped me in dealing with cancer is talking about it -- both to myself and to others-- as "dealing with" rather than "fighting". For me, violent language of fighting and battle isn't really comfortable. I don't like reading obituaries that say things like "she lost her battle with cancer, which to me implies that she could have lived forever, if only she had fought harder. And fighting takes a lot of energy that I'd rather spend living. 

For a lot of people, the "fighting" language comes naturally and helps them keep going and keep up hope and I have no quarrel with them at all.  I'm probably doing most of  of the same things the fighters are doing in making treatment decisions, living their life day by day in the best possible way and so forth.  I say if something works, don't fix it!  I just have an alternate way of talking about it.

 I've also approached cancer with curiousity.  So, for example, I've had 3 primary cancers and 3 surgeries, plus radiation and chemo. Prior to my first cancer,I hadn't been in the hospital since I was a small child.  I felt like I was in a foreign country-- they do things differently there!  So I was interested in how they do things and at times that helped me feel less fearful. 

Enough of my philosophizing! Hang in there and you'll get through this. I love that you are working to use for yourself what you have told others-- all good advice!

 

 

[chinvi]

Some of the members on here who opted for early chemo have had amazing results. Some have continued working throughout and not many have had horrendous side effects. Presumably if you started chemo and found it too tough you could call a halt. Perhaps worth checking with the specialist. You can always use one of the cancer apps  to get information.

[LUNGevityKristin]

Hi Joana,

For financial resources, you can go here: https://www.lungevity.org/for-patients-caregivers/survivor-resource-center/additional-resources-for-survivors

The Lung Cancer HELPLine can give additional resources 844-360-5864

And also drug manufacturers may have programs for free or reduced costs.

Please do not hesitate to reach out to the Lung Cancer HELPLine, that's what they are here for!

[Roz]

Hi Joana,

I just wanted to let you know that after I read what you wrote, I was so impressed with the level of your introspection and the philosophical questions you are asking.

As Bridget so beautifully stated, many of us do not see cancer as a "fight." I, personally, see it as a process. Each step in the process brings me closer to an awareness of who I am now that I have this disease. My outlook is to move forward each day, in whatever way that I can accomplish that.

As I am also from a profession (retired Speech-Language Pathologist) that requires patience, understanding and kindness, I try to extend that to myself. It's in my nature to believe and hope not just for myself but for all who have lung cancer. 

Best, 

Ro

[Tom Galli]

Joana,

Several of us were recently discussing financial solutions to pay for lung cancer treatment. Here are three simple things you may try to lesson the cost burden.

• Ask hospitals and physicians for pro bono treatment. It can't hurt to ask and I know more than a few that benefited from this extended kindness.
• If you know a physician or have family connections with a physician, ask the physician to solicit pro bono treatment. I know this approach works.
• If you don't have health insurance, ask your treatment cost be billed at the Medicare contract rate. There is a substantial difference between the Medicare billed cost and the Medicare paid cost.

It never hurts to ask.

Stay the course.

Tom