Lung cancer, but not lung cancer my update.

[gaylepc]

Quick update. Not good. It appears this is not primary lung cancer but metastatic cancer which originated from my endometrial cancer 9 years ago. That was stage 1a. Because this is considered metastatic, I have no idea where it will stage. I am really, really scared.

I am working to get scheduled with my original gyn oncologist on the request of the pulmonologist.

I was told not to google, but I did and shouldn't have. The stats aren't good. Since I did just have a PET scan, and the only thing that lit up was this one tumor, I am praying that things will move fast and they will start some sort of chemo rapidly and kill off these errant cells. This is incredibly rare for this to show up this much later after a full hysterectomy and being cleared on annual scraping/pap smears. Literally only 1 to 4 % of mets from endometrial cancer show up past 3 years, but some do even later, 15 to 17 years. All this time I was so sure I was out of harms way from this because they caught my endometrial so early.

I am praying that because they have caught this as the one tumor, literally NOTHING else showed up anywhere else and the PET scan was full body, that they can do something fast to halt it.

I am terrified. And feel  like I just fell off the moutain I was starting to climb.

Pulonologist had originally said the tumor would be stage 1b, but since this looks like it is a metastised cancer I know the staging will be much worse. 

Has anyone been through anything like this?

[LouT]

Gayle,

It's understanding that you are upset.  But right now I'm going to focus on the fact that (at the present time) a single tumor is showing up.  There are many questions to ask such as the the grade of the endometrial metastasis, rapidity of spread, and degree of spread.  Lung mets afford higher survival time than all other organs while brain mets is the works case scenario for survival time.  You really need to sit with your doctor, determine all the elements that are factored into survivability so you can get a clear picture.  Whatever that picture turns out to be will be better than the blind fear that we can feel with the unknown.  Please make sure you speak with your doctors and get every one of your questions answered.  Find out exactly the planned treatment and what the potential benefits and negatives of that treatment would be.  Then please update us when you can.  Know that many are likely following this and will be here to support you.  You are also in my prayers for a good outcome to your present circumstances.

Lou

[gaylepc]

Thank you so much Lou. I really need to be in action. I am praying I get an appointment next week and can get the ball rolling. Just waiting on a call back for that. There will likely be at least two Oncologists, both the gyn and the lung oncologost, as well as the pulmonologist. I am formulating an extensive questions list now.

This is scary.

[edivebuddy]

Did they compare your old tissue samples yet?  I don't know if Cali requires longer retention than 10 years. If mot, a source of valuable information may be about to get destroyed.  They may be able to do NextGen sequencing on both samples.  And the comparison of the current and old will guide treatments. 

While they might still get a consult on your biopsy if it is a recurrence it was extremely slow growing.   I don't know if it has any real meaning but  slow is good. 

I just read about a case of Ultra-late recurrence to the lung.  1b 14 years after initial  EC treatment  She developed a single  9cm.blung tumor. After neoadjuvant chemotherapy she had a lobotomy and was still alive 6 years later when the case study was published.  Keep you pulmonary surgeon. 

 

https://jenci.springeropen.com/articles/10.1186/s43046-020-00052-2

[edivebuddy]

I wanted to add Did they compare your old tissue samples yet?  I don't know if Cali requires longer retention than 10 years. If mot, a source of valuable information may be about to get destroyed.  They may be able to do NextGen sequencing on both samples.  And the comparison of the current and old will guide treatments. 

While they might still get a consult on your biopsy if it is a recurrence it was extremely slow growing.   I don't know if it has any real meaning but  slow is good. 

I just read about a case of Ultra-late recurrence to the lung.  1b 14 years after initial  EC treatment  She developed a single  9cm.blung tumor. After neoadjuvant chemotherapy she had a lobotomy and was still alive 6 years later when the case study was published.  Keep you pulmonary surgeon. 

 

https://jenci.springeropen.com/articles/10.1186/s43046-020-00052-2

[edivebuddy]

I wanted to add your case has case study written allover it.  So the best in the world will may be willing to see you or consult on short notice.  

[gaylepc]

Thank you edivebuddy. I was thinking it had case study written all over it as well. This is VERY unusual, and my pulmonologist said she was actually quite shocled. I am still trying to get an appointment with th oncologyst/gyn. I think that will likely be next week. I also suspect there will be a lung oncologist involved as well.

I have no idea if they have saved the samples,but it's on my list to ask when I see the gyn. I feel ike this should not have happened. They should have been doing PET scans or something. This mass in the lung would not have shown up on a pap smar/scrape. if I hadn't coughed blood I never would have known. I guess it is so rare, that to order PET scans on stage 1a hysterectomy patients is not cost effective, but it does make me a little mad. This could have been found sooner, or they could have done chemo after the hysterectomy and perhaps avoided this.

Edited Saturday at 12:55 PM by gaylepc
Typos

[edivebuddy]

Doing scans after 3 years may carry more risk than rewards.  Each pet ct carries about a 1 in 1000 additional risk of developing a new cancer.  They are cumulative too. But as the costs of liquid biopsies come down I believe in the future it will be part of everyone's annual physicals.

[gaylepc]

7 minutes ago, edivebuddy said:

Doing scans after 3 years may carry more risk than rewards.  Each pet ct carries about a 1 in 1000 additional risk of developing a new cancer.  They are cumulative too. But as the costs of liquid biopsies come down I believe in the future it will be part of everyone's annual physicals.

I didn't realize that, good info.

[Karen_L]

Ugh, I’m so sorry you’re experiencing all this. I can understand why you’d feel angry at your original providers. On the other hand, if this is such a rarity, they will probably be in a medical dither, too. 

This waiting around for an appointment is hard ridiculous. A doctor’s scheduling staff told me something ridiculous a couple of days ago, which suits the doctor, but is bad for me. So bollocks on the scheduling office, I’m going around them to contact the doctor directly. (I have a relationship with him I feel I can trade on.) My situation also involves a disciplinary cross-over, plus insurance, which I’m sure motivates everyone to not be the primary point person. <sigh> 

Since the pulmonologist asked that you bring the gyn on board, perhaps their office would be willing to get on the line to the gyn’s office to urge the process along. Things seem to go faster that way. And, I don’t know if they are all part of the same medical system, but if they are, it sounds like you might benefit from a single point of contact to be coordinating all this. Here, that’s called a nurse navigator. In other places, it’s a case manager. Of course, you may decide that is not something you’d be interested in; one week into my lung cancer dx process, I decided the nurse navigator was simply a well-meaning gatekeeper to all the medical folks, and I just stepped around her. I have found it to be greatly to my benefit to be a squeaky wheel. A cheerful, personable, helpful wheel, but squeaky nonetheless. I joke about being their resident pain-in-the butt. I find they are more helpful when I am not projecting my terror, but seem to be a super-centered person who finds the system amusing and stupid— because generally, they do too. 

I’m heartened that yours is a single tumor. It sounds as though that was discovered via biopsy? Have they done any genetic testing? 

You are already suffering from your foray into GoogleLand, so there’s no need to harp on it. At the same time, as you endure the waiting game, I wonder if it might help your sense of agency to do a little poking around in sites that might be doing research in areas related to the areas you seem to be treading in. I am not suggesting you’d do anything with the intention of action, but it might keep your mind occupied. I tend to feel better when I am learning something (that isn’t related to scary statistics.) The NCI-designated cancer centers might be interesting to look at. And, if this would just add fuel to your anxiety, please, do not even consider it.

Hang in. Keep us posted. 

 

 

 

 

[gaylepc]

Thank you Karen! I am beyond a squeeky wheel, I am downright pushy, but always in a nice way.  The gyn/oncologist is not in the same system as my pulmonologist. She  said if he (gyn) cannot see me this week, she will have me see another oncologist in the same system she is in that specializes in lung cancer. Then, between the two of them, they will get what information they need from the original gyn/oncologist. I am quite sure all three Dr.s will be involved in this. My pulmonologist is a mover and a shaker and she gets on things fast.

I know that my pulmonologist ordred genetic testing of the samples. They have known it was s single tumor since the PET scan 2 weeks ago, and the bronchoscopy confirmed that. Let's hope treatment starts fast so that's all they will be dealing with.

For now, I am staying away from google until I have more solid information. I am just trying to focus on the positives: it's one tumor, the endo cancer was slow growing to begin with, and they not only have standard chemo, and genetic options, but also hormonal options as most endo cancers are hormonally driven.

Weekends are the hardest for me as there is just nothing I can do to facilitate things moving along. Tomorrow is Monday and I can be in action, which s MUCH better.

 

[Livin Life]

I can't add anything to all that has already been stated.  Sending support and positive/healing energy your way, gayle!