Update: Postponing treatment and choosing RT or Surgery

[ColleenRae]

Hello!

I learned in Dec 2016 that I had a suspicious nodule in my left upper lung. It was a watch 'n wait until October 2018. I had VATS to remove the entire left upper lobe. The tumor was still small, around 9 mm, but had progressively gotten more dense. Post-surgical biopsy confirmed it was NSCLC. Stage 1. No lymph node involvement. I felt very fortunate that surgery was the only treatment I required.  Since then, I have been getting regular lung CT's as follow-up. My surgeon had told me after surgery that I was "cured". I did not ever quite believe that and felt he was a little too optimistic.  Fast forward two years, and he started talking to me about "another small spot" on my upper left lung. He said "we" had been following this since my lobectomy - but he had never mentioned it to me back in 2018. 

I decided to get a second opinion this past year at Seattle Cancer Care Alliance (w/ Univ of WA Med Ctr). (Finally! So many of you advised me to get / asked me why I didn't have an "oncologist"; my surgeon never referred me to an oncologist). The oncologist has been great!!! Wonderful "middle man"; just what I needed!

I was advised this is likely cancer just like the last one and that it is growing slow. It has not changed much in size in the past year and the dense portion is very very small. Around 8-9mm. The oncologist ran this past the tumor board. The radiation oncologist and the surgeon both felt they could treat this when I am ready. The oncologist was trying to assist in helping me decide which treatment would work best for my personal situation (live out-of-the area; single parent of adult disabled child). I was told the "efficacy" of either treatment is about the same.  I had a consult with the radiation oncologist and he would use SBRT - 4 or 5 sessions every other day. We discussed some of the risks, side effects, issues going forward if I choose RT.  I have now asked for a consult with the surgeon as well. I would just like to know more about the impact of both treatments on my future lung function, not just efficacy.  I am a bit concerned about "hazy" scans in the future as a result of RT. If I have surgery, the oncologist advised they would need to remove approximately 1/4 of my left upper lobe.  So, I'd lose that in addition to the RUL that was previously removed.  and the recommendation was to not treat it at this time - as long as I could deal with that emotionally.  I felt I could. I just adopted the mindset that cancer - my cancer - is likely going to be a chronic condition. Given my relatively young age (they say!) and past smoking history, I stand a good chance of developing more tumors as I continue to age.

I was going to move forward - before the surgical consult - and just proceed with SBRT. But then, life changed, again... We've been wanting / trying to buy a home for a long time. We were buying one last Fall and I backed out after my last scan, due to my fears about another lung cancer. We regretted that decision, as we let a great house go and I ended up not even having any treatment. We just learned of another home and have an accepted offer.  I have to find stable, sustainable housing for my son and this is a great opportunity. We don't have to move out of the area. Ticked off the whole checklist. We've been told it will likely take at least 60 days to close (terrible wait for appraisals). I don't see how I could get SBRT - and even less, surgery - before we close and get moved.  I know I need to put my health before something material like a house, but I feel I need to take a gamble with this. Housing is  an important issue for us and has been very difficult to obtain in our Pacific NW market. Both the oncologist and the radiation oncologist I spoke with said they believe this should not change too much if I wait to get another scan in January 2022, but they can't guarantee it won't see explosive growth or metastasize if I put this off, which I understand.  I have never been a gambler, so this is a really tough decision for me to make.  They have all said they'd like to put this off for as long as possible, to delay any impact on my quality of life. They said this is not likely to kill me, unless I completely ignore it. So... Am I foolish for not dealing with it now? I have considered just going ahead with the RT but it will cost me a bit to stay in Seattle for approximately 10 days.  It would only be about 4-5 hours driving RT each day, but I'm concerned I might get too tired if I drove down each day - plus I can't drive at night (cataracts; I need surgery which I'm postponing due to COVID). So, I think I'd need to stay in a hotel while getting tx. 

I honestly don't know which treatment option I want. SBRT sounds "easy" compared to having surgery again. I also don't relish the idea of being in the hospital with the COVID surge.  I have good lung function right now - according to tests - but I have definitely felt a decrease in my lung capacity since the lobectomy.  I also have nerve damage / numbness and hypertrophic scarring (keloid scar) and pain where the incision was made and where the drain tube had been from surgery. Those are additional reasons why I'd lean towards SBRT.

I wish I could get SBRT closer to home (there is a hospital affiliated with the cancer center about 45 minutes away that I'd love to go to, but the oncologist said he'd prefer I come to Seattle). I'm concerned about trying to move / close on the house in the event I have any kind of surprise side effects.  I also don't want to be run down prior to either treatment I choose.  Weather is also an issue. It would be much better to go for treatment now, versus the chance of snow/ice in January. Why couldn't this be easier?!!!

Mentally, I'm just fine holding off on this until January. I love being in denial and forgetful (at times) that cancer is even a part of my life!   I just hope I'm not foolish in delaying treatment. I'd love to hear from others... If you chose between surgery or SBRT, how scans are for you following SBRT, lung function following either procedure, etc.  I really just want to be able to live several more years in good health. I want to be able to enjoy this (hopefully) new home with my son and to know I've done what I can to take care of him. That's why I can't let this house go this time. I just hope my "luck" in watching and waiting on this tumor will continue at least until January.   Thanks for "listening"... Love and best wishes to all!

[LexieCat]

Hey, Colleen,

I think if it were me, I'd go with the radiation, rather than lose more lung tissue. That's what I was hoping for, before they found the met to my sacrum (and several lymph nodes) that made me Stage IV. From what I hear (and pros like Tom can fill you in better than I can), SBRT is relatively quick and has fewer side effects than the regular, fractional radiation that goes on for weeks at a time.

Do you know how long it would be before they could start radiation treatment? and how long does it go on for? You said every other day, but over what period of time? Is it the 10 days you were talking about? 

Everybody would weigh this stuff differently and nobody has a crystal ball to know how it will all ultimately shake out. If it were me, I think I'd have the RT now. Guess that's colored by my experience with a sudden shift from A-OK to Stage IV. That wouldn't necessarily happen in your case--some people do fine for a long time with indolent cancer (incidentally, have you had a PET-CT to check for FDG uptake in the nodule or anywhere else?). 

Good luck with your decision, and tell the kiddo hi for me.

[ColleenRae]

Thank you, Lexie.  I really appreciate your two-bits! I will say hello to my son as well! How nice of you! He is familiar with your name as I've shared with him over the years (!) all of the information and support you and others have provided. 

I just need to converse with others like yourself right now about this.  I'm stressed over cancer and stressed over buying a home. Keep thinking I'm crazy to even consider buying. So afraid I'll leave my son with a mess. I want this to be a joyful and hopeful transition for us.

Yeah - I'm really leaning toward SBRT for same reason; to save lung tissue.   Radiation oncologist said likely 5 sessions, so M, W, F and then M, W the following week. I am sure / would expect I could drive home over the weekend versus staying in Seattle.  There would also be the appt prior to tx to calibrate everything.

My son could go with me (he wants to), which would help so I'm not worried about leaving him at home. He does qualify for respite assistance / individual provider care, but we would have to locate someone to provide it who could stay at our home or at least come by - not easy to do with COVID and he's adamant he does not want someone else coming to the house at this time. I have to agree with him.

I didn't want to plunk down cash on a hotel at this time due to mortgage application, but I would do that versus putting any of it on credit. I believe I have enough to cover costs on home purchase and medical / hotel costs, but just didn't want to answer any questions re: bank balance dropping in case the lender asks. The last thing I want to do is let them know I have cancer.

I already have a second round of RT I need to complete for a benign foot condition the second week of October. That is another reason why I'm wondering how I can do all of this within the next 60 days... and complete the sale on the house. When it rains, it pours, huh?!  I really can't delay the RT for the feet by much.

That is a good question re: PET-CT. No, I have not had one this time around. Last time - prior to lobectomy - my small tumor lit up to 3.6 if I remember correctly.  I asked the oncologist about a PET, but he said they are all in agreement that this is likely another slow-growing adenocarcinoma, so they didn't feel it was necessary.  I sent some questions to his office today. I know he can't predict, but maybe he can give me some advice on whether it's relatively safe to hold off on this or to do it asap.  If I am going to do this, I'd better get moving on it now. Just so concerned if there are any side effects or issues physically that might impact my ability to get us moved. Excited about the house, but not about moving our belongings or packing up. I get tired just thinking about it. My son is so excited. He will help where he can but I know what I'm in for...!

[ColleenRae]

Lexie,

I'm sorry... I am so distracted right now (!), I didn't answer your question. I don't know when they can start radiation. I actually sent a message to the RO today asking this, letting him know my schedule and asking if he thinks I can pull this all off - foot radiation for one week, then SBRT appointments and closing, packing and moving. When I had my consult with the RO he was very accommodating, saying he could do my treatments in consecutive days, but he'd prefer not to. I agreed. He said to just contact his staff when I am ready to do this. He did not indicate how long the wait might be or that there might be any problem. I did express concern about waiting until next January, in the event COVID is worse after the holidays.  He did not seem to be concerned about that. In the meantime, he encouraged me to get my flu shot and COVID booster (which I was able to get both this past Wednesday).

I said earlier I am fine in waiting, but maybe I'm not. I keep telling myself that if I can't address the lung cancer until January that it will be fine.  But I know that can change so quickly. I think of your situation all the time and realize that is something I will always need to be prepared for. Just wish I was as brave and energetic as you are!

I wish I was super woman and could do it all!

[LexieCat]

I may be brave, but energetic? Nah. 

Hopefully you can come up with a plan you're comfortable with. Maybe others here will have some good suggestions.

 

[ColleenRae]

Energetic because you seem to have boundless energy in giving to others - here in this forum.  I can't even keep up checking in once in while. You're my hero.

 

[Rower Michelle]

Hi Colleen Rae!

Good to hear from you!   You’re facing a treatment decision even physicians are struggling with today which I suppose is a “good” problem to have but doesn’t make your life any easier.  
You might want to contact the cancer center social worker to find out what type of financial assistance is available for lodging- In KS we have people come from hours away too and there is a free treatment housing option at a nearby hotel available through the cancer center and the American Cancer Society.  It’s worth asking about.  

As for Covid concerns during treatment, your doctor is right… please don’t let this get in the way of your treatment options.  The media is still Covid, Covid, Covid full court press, but the reality is the medical community has come a long way in the last year and as my doctor indicated, the odds of getting Covid when precautions are taken is statistically pretty low. Last year at this time, all the LC patients were still in lockdown and this year we’re masked up out and about.  In fact at the LiveStrong program at the YMCA, the LC patients outnumber the group for the first time ever.  I couldn’t imagine going to a gym last year at this time yet here I am with my doctors signed blessing.  My onc says we need to learn to live with Covid and not in fear of it.   We have two at home test kits in the house now for rapid testing.   We haven’t had to use them but it brings me peace of mind.  I’m very careful out there but everyone has to find their own comfort level.  
 

Even though I have stage IV disease, we’ve had a hypothetical discussion with my onc as surgery could be an option as well as RT.   
Given what we know about recurrence rates in LC, I’d have to agree with Lexie too.  Surgery may not be considered curative treatment, RT with equal effectiveness seems to be far better tolerated.  I can’t remember this but have you ever had biomarker testing before?   Even in early stages this is important for assessing the risk of recurrence.  
 

Good luck on the house-we’re in our fifth one- not a fun process— but worth all the hassles in the long run!  
 

Michelle

[ColleenRae]

Hi Michelle! Good to hear from you, too!  Another "hero" here that I look up to!

Thank you for your message and great suggestions, reassurances, etc.  There is a type of hotel set-up that's associated with the cancer center that offers reduced rates for patients. Personally, I still think it's expensive (close to $100/night), but they do offer financial assistance if needed. Right now I'm okay, but good to know for the future. They are currently full but said that changes daily. They can recommend other hotels in the area that offer a medical rate. Great idea to connect with a social worker and obtain American Cancer Society info for the area as well. 

My concerns re: COVID were more that I might have trouble even accessing treatment after the holidays if things get shut-down or slowed down due to staff shortages again. RO does not foresee that being a problem.  I think it's fantastic that you are attending LiveStrong at the Y.  I went to our local program several months after my surgery and really enjoyed it. Unfortunately, they moved the program to a different location out of the area and then COVID hit. I'd love to enroll in that program again. Great people and very humbling to see what other people have been through and what they can achieve.  Good for you!   We aren't doing as much as we were pre-COVID but we do get outdoors quite a bit. Fortunate that we live where we can choose from a lot of different activities and stay distanced. We thought about getting some home test kits as well - for the same reason: Peace of mind (just in case). 

Biomarker testing... No, I have never been tested. None after lobectomy. I have asked the surgical oncologist and the medical oncologist about this. I really don't understand why, but they do not feel it is necessary for biomarker testing. I keep reading - as you have pointed out - that it is important for assessing the risk of recurrence and to have an idea as to what treatment could be used.  Every time I've asked I feel like my concern is dismissed. I'm not sure why or what the reason is for this. The conversation is stopped when I ask. It's already on my list of questions to ask again.  That was one of my concerns about SBRT as it doesn't allow for any testing of the tissue. It will be zapped and destroyed. Medical Oncologist did not seem concerned about that.  I can't figure out why none of the providers (and these are both well-known cancer centers with world-renowned cancer doc's) aren't pursuing this. When I've asked, the conversation seems to get derailed and then I forget to go back to it and get my answer!

I've been doing a LOT of thinking since my first post here and I've decided I will choose SBRT over surgery. Now the question is when.  The RO I had the consult with said the scans showed the tumor had not changed much; very minimal growth in over a year with minimal solid component (5mm). He said the longer I can avoid treatment, the better and that he'd be very surprised if this increased in size much by January - should I decide to wait.  IF I can physically and mentally juggle the house stuff and medical needs, I'll try to squeeze this in as soon as possible. If not, I'll just have to get scanned again in January and go from there.  If I have this done now, I just pray it won't affect my ability to move us. New house has an upstairs... Hoping that's not going to be an issue for me. I'm fine with stairs now. My son is always willing to help but he's got some motor skill delay. He's a skinny kid but getting stronger!  I haven't owned a home since 2007. I sold our last one when we lived in another state - right before the housing bubble burst. When we moved to WA we couldn't decide what part of the state to live in. When we did, housing prices were just booming and they haven't stopped. We've got a great opportunity with this place. So odd, because I actually drove by this home years ago when we were considering moving here and told my son "Now that's exactly the type of home I would love to find for us!"  Eight years later and here we are, actually buying that same home.  The Universe has got to have some part in this   I am determined that neither cancer nor COVID are going to interfere with this opportunity! This will be my 4th home purchase - but such a different focus this time as I hope it will be a place my son can remain in long after I'm gone. He is sooooooooo excited about this one. The location is perfect for someone who doesn't drive.

Thanks for the good wishes, Michelle. You sound like you are doing great and that is so nice to hear / know. Like LexieCat, you have been a real inspiration and more helpful than you can realize. Have a good rest of your weekend.

[Rower Michelle]

You can always ask for a blood/liquid biopsy.  The technology is just as good if not more accurate and faster than a tissue biopsy.  I get the push back from the docs since this is a new approach and you need to consider pushing back on this issue.  The Lungevity help line and Go2Foundation have advocates to assist.  I’d recommend taking another shot at the biomarker testing, particularly in the event there’s a mutation.  Starting targeted therapy in early stages is becoming more common.  

[Tom Galli]

ColleenRae,

Good to hear from you again! 

I think you've made a good choice with SBRT versus surgery. And I am very happy you are not allowing cancer or COVID to interfere with life. After all, life is what we get (hope to get) when we choose treatment. Congratulations on the house!

SBRT is a simple and relatively quick process. There will likely be one, maybe two, periods of mapping scans where they locate your tumor in 3 axial planes. Then there will be a short delay while the radiation oncologist and physicist plot the movement and dose of the radiation to be delivered. They will use a computer to do the plotting and once determined, this plot will be loaded into the radiation device as your unique treatment program. The scanning mechanism is a CT scan and depending on the type of SBRT used, you may find yourself encased in a gelatin mold or strapped to an orientation on a fixture board. This is necessary to ensure you present the same orientation each time you are treated. My SBRT was 3 consecutive days of 15-minute sessions. It will be relatively quick, painless, and effective, and you'll quickly be off to enjoying your new home. About 3 months after treatment, we will celebrate your NED scan!

Stay the course.

Tom

[BridgetO]

Hi ColleenRae!

I'm glad to hear from you again, but sorry to hear about your nodule.  SBRT sounds like a good decision, given the concerns you have. The idea  is a good one about checking with the American Cancer Society and the hospital social worker about free/reduced price options for housing near the cancer center. No use spending money on it if you can get a decent place to stay for free! About buying a house, a psychiatrist I know once said that the only time he'd prescribe benzodiazapine tranquilizers was if someone  was getting married or buying a house. What dtoes that tell you? It can be a hair-raising process. Things often go "wrong" (usually just delayed) at the last minute. So if you feel stressed about the purchase, it's normal. You might want to start preparing your son for the expected stressors of the purchase and moving, if you haven't already done that.

About the "cure" issue. I was also "cured" by my surgery and fortunately I'm still NED. But after looking at some stats -- I confess to consulting Dr Google-- it seemed to me that "cured" for lung cancer was similar to  a poor prognosis for the stage 3 gynecologic cancr I previously had. BTW, I'm NED on that one, too, 10 years now. I think the issue for LC is the high risk of recurrence. That's why we get the CTs regularly. In any event, a small slow growing tumor is highly treatable. probably "curable" and you have every prospect of living a long, good quality life.

Keep us up to date and ask questions, both here and of the doctors.

All the best, 

Bridget O

[ColleenRae]

On 9/25/2021 at 6:53 PM, Rower Michelle said:

You can always ask for a blood/liquid biopsy.  The technology is just as good if not more accurate and faster than a tissue biopsy.  I get the push back from the docs since this is a new approach and you need to consider pushing back on this issue.  The Lungevity help line and Go2Foundation have advocates to assist.  I’d recommend taking another shot at the biomarker testing, particularly in the event there’s a mutation.  Starting targeted therapy in early stages is becoming more common.  

Thanks for such good advice, Michelle! My apologies for responding so late. This is really good "ammo" to have   I had never heard of a liquid/blood biopsy to test. Fantastic! That was one issue that concerned me about RT over surgery. You've provided a solution to that problem.  I'll let you know how it

 

[ColleenRae]

On 9/26/2021 at 9:12 AM, Tom Galli said:

ColleenRae,

Good to hear from you again! 

I think you've made a good choice with SBRT versus surgery. And I am very happy you are not allowing cancer or COVID to interfere with life. After all, life is what we get (hope to get) when we choose treatment. Congratulations on the house!

SBRT is a simple and relatively quick process. There will likely be one, maybe two, periods of mapping scans where they locate your tumor in 3 axial planes. Then there will be a short delay while the radiation oncologist and physicist plot the movement and dose of the radiation to be delivered. They will use a computer to do the plotting and once determined, this plot will be loaded into the radiation device as your unique treatment program. The scanning mechanism is a CT scan and depending on the type of SBRT used, you may find yourself encased in a gelatin mold or strapped to an orientation on a fixture board. This is necessary to ensure you present the same orientation each time you are treated. My SBRT was 3 consecutive days of 15-minute sessions. It will be relatively quick, painless, and effective, and you'll quickly be off to enjoying your new home. About 3 months after treatment, we will celebrate your NED scan!

Stay the course.

Tom

Hello Tom!

Good to hear from you as well!

Yes, I am going forward with SBRT.  I was offered the surgical consult (that I requested), however, I decided to not schedule it. I do think SBRT is the best option for me to take.   Your description of the process was very helpful - thank you!  The radiation oncologist did not do nearly as good a job as you in describing what to expect

I heard from both the RO and the med oncologist this week. Neither anticipates any problem in holding off on SBRT until after the first of the year. So, that is my plan at this time. We are moving forward with the home purchase, so I can at least get this out of the way without disrupting the radiation schedule due to real estate delays.  If we can close earlier than anticipated, I might try to get the RT earlier.

Thank you, Tom, for providing a great description as to what I can expect.  Your encouragement means a lot!

Colleen

[ColleenRae]

On 9/26/2021 at 1:13 PM, BridgetO said:

Hi ColleenRae!

I'm glad to hear from you again, but sorry to hear about your nodule.  SBRT sounds like a good decision, given the concerns you have. The idea  is a good one about checking with the American Cancer Society and the hospital social worker about free/reduced price options for housing near the cancer center. No use spending money on it if you can get a decent place to stay for free! About buying a house, a psychiatrist I know once said that the only time he'd prescribe benzodiazapine tranquilizers was if someone  was getting married or buying a house. What dtoes that tell you? It can be a hair-raising process. Things often go "wrong" (usually just delayed) at the last minute. So if you feel stressed about the purchase, it's normal. You might want to start preparing your son for the expected stressors of the purchase and moving, if you haven't already done that.

About the "cure" issue. I was also "cured" by my surgery and fortunately I'm still NED. But after looking at some stats -- I confess to consulting Dr Google-- it seemed to me that "cured" for lung cancer was similar to  a poor prognosis for the stage 3 gynecologic cancr I previously had. BTW, I'm NED on that one, too, 10 years now. I think the issue for LC is the high risk of recurrence. That's why we get the CTs regularly. In any event, a small slow growing tumor is highly treatable. probably "curable" and you have every prospect of living a long, good quality life.

Keep us up to date and ask questions, both here and of the doctors.

All the best, 

Bridget O

Hello Bridge O.

Thank you for your reply! I am slow in responding here - my apologies!

Thank you for your suggestions. I could likely get SBRT a little closer to home and not have to deal with the cost of a hotel stay. However,  I had asked the RO about the possibility of doing so, and he said he'd prefer if I came to Seattle versus Bellingham or Mount Vernon, WA.  I'm really not sure why. I hope it's not just for territorial reasons. He did say something about the quality of their equipment, which I am sure is top-notch in Seattle.  Those were good suggestions on who to contact regarding this.  I've got $ set aside for this (knew I'd need to do this again at some point!), but you are right - no use spending this kind of money if I can help it.

I can see why the psychiatrist said what he did about buying a home... Completely agree!  Seriously, we have been through this so many times in the past few years (at least as far as making offers and/or backing out of offers), that we're a bit numb to the process. But this time is different. We feel very calm about our decision (knowing this is a good choice for us) but the anxiety is still there. Patience is definitely a virtue to cultivate...ha!  Surprisingly, my son is handling things very maturely and with extraordinary confidence.  He has said, however, that he will feel devastated if this does not pan out - but he won't give up hope that there will be another home again. So, I'm happy that he is maintaining this attitude. Thank you, Bridget, for recognize his needs and how I might need to address them

Your last paragraph... I succumbed to "Dr. Google" stats recently as well. Not very encouraging. But your personal stats are very encouraging. You have battled cancer more than once and your NED record offers hope to all of us.  I want this to continue for you for many years to come.

I'm trying to maintain the outlook that I "have every prospect of living a long, good quality of life" as you've stated. The doctors have made similar statements. This is why I'm going through with a home purchase this time; no backing out of fear that I will be dead from cancer. I realize I wasted time since my first lung CT in 2016 (when nodules were discovered) worrying about dying. I'm choosing not to think that way now. To be prepared; yes. But not to let that fear rule every day. I will miss out on too much.

I am very grateful that my initial LC was found and treated early and - even though I still have cancer - I continue to receive regular scans to stay on top of it.  I do not know what I would have done three years ago without the camaraderie, advice, support and examples set by of all of you here on Lungevity.  I REALLY need to join one of the Zoom meetings each week... make that a priority. I'd love to meet all of you "in-person"!

Thank you, Bridget.  You take care!

 

[BridgetO]

Hi ColleenRae,

It sounds like you're in a good frame of mind about this. I can really notice the difference in your tone from the way you wrote about your first diagnosis three years ago and your concerns about your son.  Hope is now shining through! I'm glad that we at Lungevity have been a help to you. Keep us up to date. 

Bridget O 

[Susanrae]

Hi ColleenRae, As you move forward with your house and healthcare decisions, good luck to you.  You and your son are in our thought and prayers, rooting for you both!  Susanrae

[ColleenRae]

3 hours ago, Susanrae said:

Hi ColleenRae, As you move forward with your house and healthcare decisions, good luck to you.  You and your son are in our thought and prayers, rooting for you both!  Susanrae

Thank you, Susanrae, for taking the time to post such a nice message. Means a lot. So very nice to "see" you here and hoping you are doing well!