Any Pancoast survivors/stories?

[huj123]

Hi All,

After a CT Scan, the doctors found a mass that is about 5cm in the upper lobe of my mom's left lung. They mentioned that the cancer may have also spread to the shoulder joint (my mom has been experiencing some shoulder pain over the last few weeks so I guess this explains it). Doing some research, it seems this is what is known as a pancoast tumor in the lungs. It seems to be pretty rare, but was wondering if anyone has dealt with this before? There's a lot of outdated statistics online and I don't really see too many stories of how people handled treatment options (or perhaps it's similar to other non-small cell lung cancers). Would appreciate it if anyone has any information or tips to share.

Also - if the tumor has spread to the shoulder, does that mean it's metastatic cancer? Or that the tumor has just gotten so large that it's putting pressure on the nerves/bones in that area? Mom is doing a biopsy along with other imaging work this week (stupid holidays really delayed us by a few days!).

This totally caught us off-guard! My mom is 64, exercises regularly, eats very well, never smoked...really blown away by this.

I also just want to say thank you to everybody who is willing to share their stories. I've learned so much about treatments offered and love the hope and optimism that everyone carries. Thank you all!

[GaryG]

Hi huj123: Thank you for joining us and sorry for your Mom's diagnoses.  Unfortunately many of us were young,  healthy and active prior to being diagnosed. Lung cancer does not discriminate.  While you were told she has Pancoast tumor, I suggest that you wait for the biopsy results. Make sure they also do the biomarker tests to see if a mutation may be present.

The answer to your second question is yes when cancer spreads out of the lung (in this case) it is called metastatic cancer and usually labeled as stage 4. However you still need to wait for the results of the biopsy to make sure. I wish you the best.

[Donna G]

Hello huj123.    Yes I am one of those Pancoast tumor survivors !   

I had shoulder pain that went down my arm and chest pain .  I had just moved back to 

Minnesota so I thought it was due to lifting and unpacking everything. I called the Dr for an  

appointment and they said " You are 50 , it could be a heart attack come to ER now !

Normal EKG and blood work but luckily an x  ray done showed a tumor in my upper lobe pressing on

nerves going down my arm and on my chest wall.  If you want my whole story go below to my story. It is posted.

Please keep us posted on how she is doing and the treatment plan . 

Donna G 

[BridgetO]

Hi and welcome. I'm glad to see that you've heard from Donna.

Here's what I know (or think I know!) about Pancoast tumors. They are by definition tumors occurring in the very top part of the lung. Because of the location, they can press on nerves and other structures and cause pain and other symptoms. They can be either small cell or nnn-small cell cancers and if non small cell(which they usually are) can be any of the kinds that NSCLC can be. That's why it's important to have biomarker testing--to see if the cancer has mutations for which a targeted therapy or immunotherapy is effective;

Here is  information about biomarker testing: https://lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer

Best wishes to you and your mom. Please keep posting and let us know what other questions you may have.

Bridget O

 

[huj123]

@GaryG @Donna G @BridgetO

Thank you all for the extremely helpful responses, details, and stories! I am holding onto hope and will update everyone once I learn more. I will absolutely make sure doctors test for biomarkers - this seems very critical!

One last question: is there any concern with the radiation of receiving the CT-guided needle biopsy? I would rather the pulmonologist perform a bronchoscopy or an ultrasound guided needle biopsy, but obviously, I think the most important thing here is choosing a procedure that removes enough tissue for accurate bio-marker testing. Curious what you all think about this?

Thank you all and God bless!

[GaryG]

Hello huj123:  I had a bronchoscopy  first to extract tissue and liquid on the inside. However my oncologist ordered a biopsy  as well. I would not worry about CT-guided needle biopsy because they can zero in on a very small area.

Make sure they take  enough tissue to perform more than one bio-marker test. Some members here had false readings on the first one and the second test found mutation. Best of luck!

[LexieCat]

Over the course of diagnosing/treating lung cancer, most of us have literally dozens and dozens of CT scans. The risk of radiation from these is far less than the risk from the cancer if it's not properly assessed and treated. I wouldn't worry at all about that. The type of biopsy most often depends on the size/location of the tumor and any lymph nodes or other sites they want to sample. When I was first diagnosed back in 2017 with my Stage Ib cancer, the nodule was too small to even biopsy. My upper lobe was removed based on its suspicious appearance and sure enough, it turned out to be adenocarcinoma. 

This time, I had a bronchoscopy to sample a much larger tumor and lymph nodes. It all depends on individual characteristics.

[Jennedy]

@huj123

I was 61 when diagnosed with Stage IV nsclc this past June. I had started going to physical therapy for shoulder pain. I had had an xray and MRI of my shoulder and neck and was told it was my neck causing the pain. In the middle of ame back inconclusive. The second was EBUS, which is a broncoscopy guided by ultrasound. We knew it was adenocarcinoma after that. I had a PET scan and that is when it was determined to be in my shoulder blade as well.

While we waited for the biomarker results, I had 10 radiation treatments to the main lung tumor and my shoulder. It helped immensely with my shoulder pain. And my lung as well. But I did end up with difficulty swallowing and radiation pneumonitis (kind of like pneumonia but caused by the radiation). Those side effects depend on the location of the tumor in your lung. And minecwas in the right lower lobe. 

It totally caught us off guard too. 

Will be thinking of you and your mom.

Jenny

[huj123]

@GaryGThat's really good to know! The doctors mentioned they will be testing for biomarkers, and their goal is to extract a very large sample of the tissue. Hoping we don't have to do this a second time

@LexieCat: that makes sense! That context really helps out. Agree with both you and @GaryG - at this point diagnosis is most important - shouldn't be concerned about the type of biopsy. I have relayed this to my mom.

@JennedyThank you for sharing your story. I honestly wish there were some kind of diagnostic blood test that would be a part of an annual physical that would show whether the lungs are doing ok. How are you doing now? Have your post radiation symptoms improved?

Just as an update for everyone: because of COVID, the doctors are requiring that patients take a COVID test 4 days prior to the scheduled biopsy appointment (really frustrated this wasn't communicated until today!). Unfortunately, due to availability of the doctors, this means the biopsy can't be performed until next Wednesday, with a PET scan to follow if biopsy returns positive for cancer...I guess I just have to try to be patient over the next 2 weeks....



 

[Jennedy]

@huj123 The side effects from the radiation are gone now. It took several weeks on steroids. I also wish there was some way other than a scan to see whether or not the therapy is working.

Patience has never been my strong suit. I am trying to work on that. 

Keep us posted!

[huj123]

Hi All,

Hope everyone is doing well. Just wanted to provide an update: mom completed the biopsy earlier this week, and doctor called back today saying that it is non-small cell adenocarcinoma. MRI and PET Scan are upcoming in the next two weeks to determine staging, so I will share more results then. Doctors mentioned that the results from the biomarker testing will be available later this week, so will share some more detail soon. 

Thank you all for the support!

[GaryG]

Thanks for the update and sorry your Mom has cancer. Once the staging and Biomarker tests are complete it will be clear what type of drugs/regimen she will be on. We will be here to help you navigate through the ups and down should you need help. Stay strong.

[Tom Galli]

Pass this along to your mother!

Stay the course.

Tom

[huj123]

Thank you @Tom Galli! I met with her last weekend and walked through the steps together! We are both trying to maintain a very positive attitude!

Thank you @GaryG - really appreciate the kindness - I actually may need your advice (update below):

Update: Mom had an MRI of her brain, which did not find cancer. She just took a PET Scan on Thursday. Seems like there was hypermetabolic activity in my mom's lymph nodes (SUV Max 9.5), and in her lungs (SUV Max 9.8). The organs were fortunately clear. However, in the bones, the PET Scan recorded metabolic activity in the spine (different areas had SUV Max of 4.5 and 5.7 respectively) and humerus (SUV Max of 5.0). The tricky thing is that my mom has arthritis in these areas (so perhaps that's why the PET Scan lighted up), but she mentioned that the shoulder pain has gotten worse over the course of the last year, which I thought was originally because of the spread of cancer. 

The doctors came back (after the PET Scan) and said that it doesn't seem like the cancer has spread to the bones (even though the PET Scan seems to indicate there's some activity there), and they would like to be aggressive and would like to perform a surgery to remove the lung tumor  (mom will have a lymph node biopsy before to see if lymph nodes can be removed as well). We asked about the metabolic activity shown in her spine on the PET Scan, and they said that they could not definitively state it wasn't cancer (so it could actually be cancer), but that they would still like to proceed with surgery first because it presents an opportunity for a cure. They said they most likely won't know until they open my mom up during surgery, whether the spine indeed has bone mets, and so they would end up treating her bone mets after surgery with targeted therapies if necessary. We asked if we could do a spine biopsy before the surgery and they said it could delay the surgery (I feel like surgery won't happen for another minimum 3-4 weeks, so I feel like there's time?)

Does this seem right to you all? It feels backwards? I feel like the doctors should be checking to make sure the cancer hasn't spread first before recommending surgery? Otherwise surgery feels like an unnecessary risk...I'm surprised they're moving towards the more invasive procedure without knowing if there's bone metastases because I would think you would want to stop the spread first. Unless their logic is that they think there's still a shot that this hasn't spread yet, and would like to do surgery ASAP.

I also don't believe they've tested for biomarkers yet even though initially they said they would (although this is still unclear, perhaps they have and they have not communicated results).

Planning to get a second opinion but would love everyone else's thoughts.  

 

[BridgetO]

I think a second opinion is a fine idea!

[GaryG]

Hi again: After my PT scan I met with a PA to learn the results. To my surprise she informed me that the PT scan shows activities in the lung as well as the prostate. She proceeded to say that the cancer may have started in the prostate and spread to the lung. It just happens that I had a procedure to remove excessive tissue from the prostate 3 months prior so I rejected her theory.  Bottom line PT scans can produce false alarms.

Even though as Bridget said, second opinions are beneficial, it seems that your medical team is on the right track by wanting to do surgery on the lung. Not only can they remove the cancer but they can also examine any other areas of concern and extract more tissue for biopsy.  My opinion would have been different if a treatment other than surgery was recommended. In that case I would prefer a biopsy on the spine first to eliminate the possibility of secondary cancer. 

This situation is one of the reasons I prefer treatment in an establishment where there is a cancer board. You get the opinion of many experts at the same time.  Best of luck and please post again as you go through the process.

[Tom Galli]

Interpreting PET results for metastasis versus inflammation is tricky. Read this for insight into PET results.

Stay the course.

Tom

[genor]

On 1/4/2021 at 1:23 AM, huj123 said:

Hi All,

After a CT Scan, the doctors found a mass that is about 5cm in the upper lobe of my mom's left lung. They mentioned that the cancer may have also spread to the shoulder joint (my mom has been experiencing some shoulder pain over the last few weeks so I guess this explains it). Doing some research, it seems this is what is known as a pancoast tumor in the lungs. It seems to be pretty rare, but was wondering if anyone has dealt with this before? There's a lot of outdated statistics online and I don't really see too many stories of how people handled treatment options (or perhaps it's similar to other non-small cell lung cancers). Would appreciate it if anyone has any information or tips to share.

Also - if the tumor has spread to the shoulder, does that mean it's metastatic cancer? Or that the tumor has just gotten so large that it's putting pressure on the nerves/bones in that area? Mom is doing a biopsy along with other imaging work this week (stupid holidays really delayed us by a few days!).

This totally caught us off-guard! My mom is 64, exercises regularly, eats very well, never smoked...really blown away by this.

I also just want to say thank you to everybody who is willing to share their stories. I've learned so much about treatments offered and love the hope and optimism that everyone carries. Thank you all!

 

[Donna G]

genor              I am a Pancoast tumor survivor ! 

I had pain in my shoulder and arm and chest and thought it was muscular .

It was a tumor pressing on a nerve going down my arm and on my chest wall .  Thank

God the doctor did a chest x ray and saw it .     My story is found below .  Keep us posted 

 

Donna G

[TJM]

FWIW...get a second opinion but if it was me I would want the surgery. If my docs had known I had Large cell they may not have approved my surgery. I am so glad they didn't and that that vile tumor is gone.

Again. Just one man's opinion. Regardless I am rooting for you both.

Peace

Tom

[huj123]

Hi All,

Apologies for the very delayed reply! It's been a hectic last few months...I hope you all are staying safe and well! Thank you for all the insightful tips - they have really helped me become much more knowledgeable about this disease. And I appreciate the personal stories, giving me hope. I have a few updates to share and would really appreciate your thoughts:

• Pulmonologist and Thoracic Surgeon recommended lobectomy because they thought the cancer was localized, even though the PET Scan indicated the cancer may have spread. We asked if we could speak to an oncologist and were told that the thoracic surgeon regularly speaks to oncologists.
• Thus, mom had surgery in February to remove the tumor
• We met with an oncologist in March, who took one look at the PET Scan and said it's obvious that this has spread to her hips and spine. We were enraged, because we then didn't understand the need for surgery - why would they recommend it, and no one told us  about the cancer spreading to the hips...we absolutely would not have done surgery had we known this. We did a bone biopsy of her spine shortly thereafter, and it came back positive
• My mom has a rare mutation: ERBB2-Exon 20; she would have been eligible for clinical trials, but she only has metastases in her  bones, so the lesions aren't considered "measurable". If she didn't have the lobectomy, she would've qualified (another frustrating element in all of this!)
• Mom also tested for PDL1, but just 3% only.
• Oncologist recommends a combination of two chemo drugs (Carboplatin and pemetrexed) and an immunotherapy (Keytruda). She said we would need all 3 through IV (or least the chemo drugs...not sure if this corresponds to Keytruda as well), every 3 weeks for the next two years. Surprised they would recommend chemo for that long/consistently...is that in line with what you all would expect?

Thank you for all the support and appreciate all the guidance!

[LexieCat]

Hi there,

I was on the same "triplet" of drugs your mom will be getting. The carboplatin is included only for the first four cycles, but the Keytruda and Alimta (pemetrexed) I'm getting every three weeks now, as maintenance therapy, indefinitely.

So yeah, what's being recommended for her is in line with what I, and others here, have been getting. 

[huj123]

@LexieCatThanks for the reply! How long have you been on that drug regimen? And how're you handling the side effects from chemo?

[LexieCat]

The only really troublesome side effects I have are fatigue (which isn't constant--it mostly hits 3-4 days after infusion and the worst of it is over in a couple of days) and brain fog (aka chemo brain), which is more annoying than debilitating. The effects made it too difficult for me to continue working in my job requiring complex legal analysis, but they've had little effect on my life otherwise. I nap when I feel like it. VERY rarely I feel a bit queasy but if I do I take an anti-nausea pill. I've never actually vomited from chemo. 

People have different effects, though--for some people the effects are intolerable and they switch to another treatment. But most seem to do fine on the triplet. 

I always suggest people keep track of what effects they experience and when in the cycle they tend to appear/go away. That gives you an idea what to expect the next time and you can plan not to do anything too intense, for example, four days after infusion when you're likely to feel more like sleeping than moving around.

Oh, and I started the triplet in September last year, ending in December. I've been on maintenance (Alimta + Keytruda) since early December.

[Tom Galli]

huj123,

I have one thought about your mom's situation. There are 4 medical disciplines who should be involved in treating diagnosed lung cancer--medial oncologist, radiation oncologist, pulmonologist and thoracic surgeon. When diagnosed at a stage less than IV, one should have a consultation from each of these disciplines before implementing a treatment plan. On reflection, I'd change "should" to must.

Stay the course.

Tom