Colorectal Cancer in Lungs

Harrisburg_Rob

Hello all, I'm reaching out to this community to provide support and to share the story of my girlfriend, Heather.    

We live in the central PA area.  Heather is 44 and was initially diagnosed with early stage 2 C/R cancer in February 2020.  The cancer seemed limited to a single, small tumor in the colon, but the surgeon planning the removal procedure reached out to us to say the scans taken for surgery showed additional cancer in the lower lobes of both lungs. We had the cancer in the lungs biopsied and it was C/R. Apparently, it had spread directly to the lungs and skipped everything in between.  We saw a lung surgeon from Penn State Hershey who said the cancer in the lungs could be removed after the source tumor in the colon had been removed.  Heather completed her first round of chemo in six months and her follow up PET scan showed activity was significantly decreased in the colon and mildly decreased in the lungs.  We followed up with Johns Hopkins during her chemo treatments to determine if there was additional removal options.  Hopkins was optimistic because of Heather's age, she has tolerated the chemo well, and the fact she has no symptoms from the cancer.  However, after sending Hopkins copies of her scans they changed their position and recommended maintenance chemo rather than removal.  Hopkins found several nodules in the lungs that didn't register any activity on the PET.  After Hopkins shared their findings with her surgeon at PSU Hershey, the surgeons at PSU agreed as well.  We are obviously disappointed and have looked into proton therapy, but that too doesn't seem like it is viable for stage 4.  

We’re devastated to hear removal doesn’t seem like an option, especially after it was presented as one before the start of chemo.  We believed the good results with chemo would make removal easier.  Everything has seemed to turn upside down now. I have not been able to find any cases that are similar to ours.  Heather is still asymptomatic and outwardly healthy.  We feel like time is of the essence.  It is all we think and talk about. 

Is there anyone out there who can provide insight into our situation? 

Best wishes to all.

Rob

abita

I am not similar as I was

I am not similar as I was stage 4 on diagnosis, mets to liver. I had a recurrence almost immediately after mop up chemo in liver, then, a few months later, a nodule on my lung that had been there since the beginning, but had never lit up on pet scan, became cancerous. I am currently on erbutix/irinotecan. The liver mets went away, and the lung mets are "stable". Oh, I have 3 or 4 as there was so much time between seeing them, switching doctors, and starting treatment, that a couple more popped up. I am not a candidate for surgery.

Trubrit

Welcome to the forum

I am sorry that you find yourself here, on behalf of your girlfriend. 

While I can't offer anything other than a welcome, I know we have several on the forum who are dealing with, have dealt with lung mets.  One of our members, NewHere, has multiple lung mets. I do so hope he pops in and sees your thread, as I am sure he will have wonderful things to tell you. 

A Cancer diagnosis can be all-consuming. Try your best to widdle a little time in the day, where it is the last thing on your mind. It may still be on your mind, but not at the forefront. Even for an hour.  Some good music, a long walk, anything that will give you both some respite from the 'What if's'.

Folks pop in often, though not always on a daily basis; so hang in there and check back with us often. 

Tru

Harrisburg_Rob

Thanks for sharing

Thank you very much for sharing.  It is encouraging to hear about the successes people have experienced with their treatments.  We have only been talking to doctors and their approach has been more clinical and matter of fact.  Thanks again for sharing.

 

NewHere

Trubrit said:

Welcome to the forum

I am sorry that you find yourself here, on behalf of your girlfriend. 

While I can't offer anything other than a welcome, I know we have several on the forum who are dealing with, have dealt with lung mets.  One of our members, NewHere, has multiple lung mets. I do so hope he pops in and sees your thread, as I am sure he will have wonderful things to tell you. 

A Cancer diagnosis can be all-consuming. Try your best to widdle a little time in the day, where it is the last thing on your mind. It may still be on your mind, but not at the forefront. Even for an hour.  Some good music, a long walk, anything that will give you both some respite from the 'What if's'.

Folks pop in often, though not always on a daily basis; so hang in there and check back with us often. 

Tru

CHuffed

Tru I saw an interview with the Mayor of London yesterday.  He said chuffed.  Interviewer did not know what it mean.  I did 

 

Trubrit

NewHere said:

CHuffed

Tru I saw an interview with the Mayor of London yesterday.  He said chuffed.  Interviewer did not know what it mean.  I did 

 

Oh, New...

I'm chuffed you knew what chuffed meant   .

 

Tom M.

Friend from Pa.

I also have shown small lung nodules. I came through great with my colon resect at Wayne Memorial in Honesdale. Mets to liver. did 22 rounds of chemo and my liver surgeon at Geisinger keep telling me that she didn't see anything in there so she never really did any surgery for my liver. I have a friend that refered me to Hershey so I went in early Oct. Hershey did a CT of chest and liver MRI. The liver surgeon that I met told me that a liver resection would clear my liver of the cancer however the lung nodules that showed on the CT scan put a damper on that. I am back on chemo to see if we can clear the lung nodules. I will be rescaned at Hershey Jan.8th Hoping and praying. Geisinger missed their window. I really can't do anything about it now except for what I'm doing. Hope everything works out for you.

Annabelle41415

Sorry

I'm sorry you had to join regarding your girlfriend.  It sounds like she is very lucky to have you as a caregiver which can sometimes be harder than the patient dealing with the disease itself.\

I'm not able to offer you any advice other than what you have received, but remember that there is always hope and she is young with no side effects from the treatment so far.  As long as she can still tolerate treatment, she should continue on the path that her doctors have set for her.

It seems like you have already gotten a second opinion, but a third is still optional.  Wishing her, and you, the best and come back here anytime you need support or help getting through this.

Kim

NewHere

80 lung mets, part of lung removed, tumors in spine & everywhere

As Tru said, that is me

Please check this link, a recent update from August

https://csn.cancer.org/node/322051

Look into getting genetic testing now and start keeping an eye out for trials and developments.  

Do not give up hope.  The 5 year survival rate for me was 10%.  I am about to start my 6th year since this started.  3 years since my cancer came back everywhere, inoperable and not curable.  Part of the issue was some were too close to the spine, too risky of bleeing out or paralyzed.  And with the involvement with both lungs when it came back, was not really an option.  Kind of like playing whack-a-mole.  They would not even due ablation.  Too many tumors and they preferred not to put me through things that were not going to really work.  (They were considering radiaiton earlier this year for a tumor that was closing my airway, they don't know how I did not have problems breathing, the exercise I mention later.  )  Which may be the issue of what is happening with Heather.  If she is responding to chemo, keeping things at bay that way may be the prudent course of action.  When my cancer came back the third time, they actually waited a year to put me back on my second chemo.  The things were small enough that there was no symptoms.  I was still asymptomatic a year later, but they had grown enough that there was no longer a choice.  (The ones in my spine did begin to cause some pain.)  Something to consider and remember - when I was diagnosed almost 6 years ago, Lonsurf was not used for colon cancer.  As of two months ago, it is shrinking my cancer.  

More details on my situation https://csn.cancer.org/user/237551  Please take a couple of minutes to go through it.  Basically I started exercising a lot three years ago when it came back the thrid time in three years.  Swim Bike Run (Triathlon)  Though my wife says I act like a 5 year old, I am 15 years older than Heather.  I am not a natural athlete and loathe running.  But instead of being on a couch hooked up to oxygen, I swim, bike, run.  Even did a 1/2 Ironman while on chemo.  (I am very slow though )  

I do some keto 16:8, eat generally well (not a specific diet, but generally eat vegatables, fruit, and non-red meat, though will have red meat occasionally and dessert when out for dinner). I would add exercise as one thing for sure - my cardio has compensated for the cancer the doctors are pretty sure.  Look at some low cost/risk supplements.  Vitamins and stuff.  Make sure they are cleared by your oncologist if on chemo, some can conflict.  

I had a scan today and bloodwork.  Saw one of the tumor markers (CEA change) and took a look at the scan.  I have gotten better at them, but still not perfect.  Will find out later this week and will post back.

Feel free to ask me any questions, DM if you like.  Try not make sure not to get too down.  It does happen during this, but shaking it off as quick as possible helps.  (Seeing Alex Trebeck passing away the other day kind of hit me, like whan anyone famous passes from cancer.)

Sorry the above is a little bouncing around, but saw your post and wanted to get some thoughts in, have something I need to get to shortly, but wanted to tune in.

 

Harrisburg_Rob

NewHere said:

80 lung mets, part of lung removed, tumors in spine & everywhere

As Tru said, that is me

Please check this link, a recent update from August

https://csn.cancer.org/node/322051

Look into getting genetic testing now and start keeping an eye out for trials and developments.  

Do not give up hope.  The 5 year survival rate for me was 10%.  I am about to start my 6th year since this started.  3 years since my cancer came back everywhere, inoperable and not curable.  Part of the issue was some were too close to the spine, too risky of bleeing out or paralyzed.  And with the involvement with both lungs when it came back, was not really an option.  Kind of like playing whack-a-mole.  They would not even due ablation.  Too many tumors and they preferred not to put me through things that were not going to really work.  (They were considering radiaiton earlier this year for a tumor that was closing my airway, they don't know how I did not have problems breathing, the exercise I mention later.  )  Which may be the issue of what is happening with Heather.  If she is responding to chemo, keeping things at bay that way may be the prudent course of action.  When my cancer came back the third time, they actually waited a year to put me back on my second chemo.  The things were small enough that there was no symptoms.  I was still asymptomatic a year later, but they had grown enough that there was no longer a choice.  (The ones in my spine did begin to cause some pain.)  Something to consider and remember - when I was diagnosed almost 6 years ago, Lonsurf was not used for colon cancer.  As of two months ago, it is shrinking my cancer.  

More details on my situation https://csn.cancer.org/user/237551  Please take a couple of minutes to go through it.  Basically I started exercising a lot three years ago when it came back the thrid time in three years.  Swim Bike Run (Triathlon)  Though my wife says I act like a 5 year old, I am 15 years older than Heather.  I am not a natural athlete and loathe running.  But instead of being on a couch hooked up to oxygen, I swim, bike, run.  Even did a 1/2 Ironman while on chemo.  (I am very slow though )  

I do some keto 16:8, eat generally well (not a specific diet, but generally eat vegatables, fruit, and non-red meat, though will have red meat occasionally and dessert when out for dinner). I would add exercise as one thing for sure - my cardio has compensated for the cancer the doctors are pretty sure.  Look at some low cost/risk supplements.  Vitamins and stuff.  Make sure they are cleared by your oncologist if on chemo, some can conflict.  

I had a scan today and bloodwork.  Saw one of the tumor markers (CEA change) and took a look at the scan.  I have gotten better at them, but still not perfect.  Will find out later this week and will post back.

Feel free to ask me any questions, DM if you like.  Try not make sure not to get too down.  It does happen during this, but shaking it off as quick as possible helps.  (Seeing Alex Trebeck passing away the other day kind of hit me, like whan anyone famous passes from cancer.)

Sorry the above is a little bouncing around, but saw your post and wanted to get some thoughts in, have something I need to get to shortly, but wanted to tune in.

 

Perseverance

Perseverance is the word that comes to my mind reading after reading your comment.  Your determination is impressive.  It definitely provides a sense of hope.  Nutrition and fitness are important to me and it’s been something I’ve been trying to stress the importance of with her.  I'm passing the stories and information this group is providing along to her as well.  Thanks for sharing.  

Harrisburg_Rob

Tom M. said:

Friend from Pa.

I also have shown small lung nodules. I came through great with my colon resect at Wayne Memorial in Honesdale. Mets to liver. did 22 rounds of chemo and my liver surgeon at Geisinger keep telling me that she didn't see anything in there so she never really did any surgery for my liver. I have a friend that refered me to Hershey so I went in early Oct. Hershey did a CT of chest and liver MRI. The liver surgeon that I met told me that a liver resection would clear my liver of the cancer however the lung nodules that showed on the CT scan put a damper on that. I am back on chemo to see if we can clear the lung nodules. I will be rescaned at Hershey Jan.8th Hoping and praying. Geisinger missed their window. I really can't do anything about it now except for what I'm doing. Hope everything works out for you.

PA friend

We met with our UPMC colon surgeon yesterday and although the tumor is small and could be easily removed he doesn’t recommend removal because of the length of time she would need to be off chemo (2 – 3 months). Chemo has seemed to stabilized the nodules in the lungs, there are 6-7 between .5 and 1.5 cm.  Only 3 register metabolic activity in the pet scan. Oddly, there isn’t evidence of anything in the liver, but the doctors are constantly reminding us that it has probably spread.  I have to point out the successes since chemo started in March 2020 (activity in colon tumor reduced by 50%, activity reduced in one nodule, and the other nodules stabilized) because, for whatever reasons, her doctors don’t do that very well. Hershey had a plan for removing the nodules, but source tumor removal is a prerequirement for that.  We find ourselves in the same boat that you're in (for the moment).  I hope you receive positive scan results!     

Tom M.

Harrisburg Rob

For a surgery they want you off chemo 6-8 weeks.  The chemo works. I get good results from it. I was off for 7 months before I ended up at Hershey. Geisinger keep telling me the didn't see anything on the scans. By going to Hershey I found out that they use a more detailed contrast dye for scans. We're all in a up and down roller coaster ride with what we have. I will remember you and your GF in my prayers. The treatments are good, they work. Keep the faith and stay positive.

Harrisburg_Rob

Tom M. said:

Harrisburg Rob

For a surgery they want you off chemo 6-8 weeks.  The chemo works. I get good results from it. I was off for 7 months before I ended up at Hershey. Geisinger keep telling me the didn't see anything on the scans. By going to Hershey I found out that they use a more detailed contrast dye for scans. We're all in a up and down roller coaster ride with what we have. I will remember you and your GF in my prayers. The treatments are good, they work. Keep the faith and stay positive.

Thanks Tom

Hello Tom.  We've had a few people tell us to use UPMC or Penn State Hershey as providers in the local area.  Technology has helped us expand beyond the confines of central PA.  We were able to have a remote consultation with Johns Hopkins within a week of making the request and sending them the scans. Thanks for the words of kindness and prayers.  

Harrisburg_Rob

Annabelle41415 said:

Sorry

I'm sorry you had to join regarding your girlfriend.  It sounds like she is very lucky to have you as a caregiver which can sometimes be harder than the patient dealing with the disease itself.\

I'm not able to offer you any advice other than what you have received, but remember that there is always hope and she is young with no side effects from the treatment so far.  As long as she can still tolerate treatment, she should continue on the path that her doctors have set for her.

It seems like you have already gotten a second opinion, but a third is still optional.  Wishing her, and you, the best and come back here anytime you need support or help getting through this.

Kim

Thanks

Thanks for your kind words and support Annabelle!