CSN Login
Members Online: 5

You are here

Great news!

CSN is getting an upgrade. All of your posts will still be here, but the website will have a new look, new features and be mobile-friendly. To prepare for the changes, the site will be down briefly at the end November. We’ll continue to provide updates as we get closer.    

Lung metastasis

Dak82's picture
Dak82
Posts: 92
Joined: Dec 2020

Haven't done an original post since this started. I will update with most recent since I have posted my treatment side effects on other posts. I also searched through old postings on this subject but didn't find what I was looking for. Here goes.

Had surgery for stage 3C2, G3 endometrial adenocarcinoma on 1 Dec 2020. Nothing particularly good came from that pathology report since the found cancer in my left para aortic lymph nodes. These lymph nodes did not indicate cancer in CT scan on 21 Nov. That scan also showed some small bilateral pulmonary nodules with largest being 6 mm. My doctor said they were too small at that point to determine anything and we would keep an eye on them.

I completed my 6 rounds of chemo--taxal/carboplatin on 30 March. Awaiting start of radiation on 3 May. But I think that has changed with the results of the CT scan on 16 April which showed an increased number of pulmonary nodules as well as growth in existing nodules. For example a 1mm nodule has grown to 9x7 mm. Nodules are both right and left, upper and lower lungs. Wonderful. Of course it is Saturday and I think I'm reading these results before my doctor has. Part of the risk you take with this program. At least I get all the test results quickly. So I think my radiation may take n a different area.

Another set of data points and I don't know if anyone else has experienced these. Pathology after surgery indicated micro-satellite instability so we did testing for Lynch. The M1H1 methylation came back positive so not genetic. But I have also read that MSI positive plus M1H1 methylation leads to chemotherapy-proof cancer cells. I can't repeat all the medical reasons for it but it has to do with proteins, etc. BUT, according to my sister who is a medical researcher for bio-patents, recent immunotherapy treatment has completed clinical trials. She said it described my precise situation and why the cells in the lungs continued growing quite rapidly through chemo.

I obviously need to wait to talk to my doctor and figure out our way ahead but I intend to ask about this. Anyone else heard or experienced this combination of indicators? Oh and one other joy the CT scan revealed is damage to my left ureter which substantially narrowed it and explains two things--my two episodes of severe pain in the lower left abdomen that left me nauseous and the high blood pressure I have developed since surgery. At my 3 month check on 12 April my initial BP was 188/89--stroke range! I want to visit my primary care physician that afternoon and it was 172/82. Cripes. Ended up with BP meds--amlodipine 5 mg. My BP had been trending in the 150s during infusion but it was low enough to start the drugs so it never came up as an issue. I figured I'd address it after chemo. So we are.

Cheers to all you ladies fighting this beast. Medicine is changing rapidly and hope is out there.

Deb

Forherself's picture
Forherself
Posts: 595
Joined: Jan 2019

I am sorry to read this news.  We were all hoping the lung nodules were nothing.  But, I agree with your sister, that immunotherapy may stop those nodules. My cancer cells were not tested for MSI but I think a positive is more likely in serous type cells, which I had.  I had the P53 mutation.  It sounds like the chemo was not effective on those cells, so it seems that the new immunotherapy treatments are for you.  I think the Pfizer COVID vaccine uses the same technology as immunotherapy.  I can't help thinking that immunotherapy will get a huge boost from this revenue.  I pray that the doctor finds one that shrinks those **** nodules.   Hugs to you.

Sue

alicia2020
Posts: 164
Joined: Sep 2020

You have done so well with chemotherapy, Deb, that I had high hopes for it working & taking care of the lung nodules. I'm so sorry to hear this news and hate it that you have to deal with it. It sounds like you have options. I hope you can see ONC soon to discuss.

You're in my thoughts and prayers. You are amazing and tough!

❌⭕️❌⭕️, Alicia

Dak82's picture
Dak82
Posts: 92
Joined: Dec 2020

A couple of hours after I posted this my doctor called and we spent a good 20 discussing the way ahead. Two topics. First we are going to fix the damaged ureter which is causing hydronephrosis in my left kidney. Probably put a stent in unless they decide something different. Two is the immunotherapy--Keytruda. I have multiple nodules so to confirm they are cancerous she is asking for a biopsy. Might still be too small. May do a PET scan as well. We'll be working through those options this week. Scheduled radiation treatment of pelvis and abdomen have been cancelled until we figure this out. I asked about radiation to the lungs and she made it sound like that's not really an optio--must be too many nodules/tumors.

My sister is convinced the methylated MLH1 and MSI positive should have triggered a realization that my cancer likely would not respond to standard treatment. After we got the test result for positive methylation to rule out Lynch Syndrome we should have zeroed in on the combinatio--it's likely the methylated MHL1 gene was turned off and would not respond. She discribed applying standard in this case like putting boxing gloves on arms with no hands. Interesting.

Thanks much for the responses. Lots that I can look back in hindsight to say we should have gone after this more aggressively when the MSI was indicated in the original tumor testing. Hah--probably would have done everything at once. Sounds unpleasant but maybe should have treated like a more aggressive cancer than "standard" endometrial adenocarcinoma.

Love to all,

Deb

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1807
Joined: Jun 2015

Deb, I look forward to hearing your next steps. So sorry you are having to go through this. 

Hopefully you will go on immunotherapy very soon and have amazing results from it.

Take care and I know you will push on to beat this!

Love and Hugs,

Cindi

Tamlen's picture
Tamlen
Posts: 323
Joined: Jan 2018

Deb, I'm sorry things are unfolding this way. I'm glad you have such a well-informed sister by your side for this.

Just something to pack away in case it's useful for the future, even though it sounds like it's not right now: Stereotactic body radiotherapy (SBRT), sometimes referred to as CyberKnife, which is a brand name. It's a form of very very targeted radiation - just one nodule, for instance. By the time my cancer was diagnosed, it had spread to my lungs (and only my lungs). I had many small nodules in the lower part of both lungs. My gyn onc arranged for me to meet with a radiation onc who specializes in SBRT. He felt only a couple of my nodules were large enough for SBRT (the largest was 13mm x 16mm), but felt strongly that if the others continued to grow, SBRT could be used to help manage any larger nodules. In my case chemo did kill off the lung mets and I ended up not needing SBRT, but if they return, it could be an option in the future.

I'm glad they're going to (hopefully) biopsy the lung mets. I had a punch biopsy for mine and it was a pretty easy, quick procedure. Good luck and keep us posted.

Tamlen

oldbeauty
Posts: 320
Joined: May 2012

Deb, like you and Tamlen, I have endometrioid adenocarcinoma but mine is Grade 2.  I am MSI-Stable and do not have Lynch.  My history is so unique (in a good way) that I will add my voice relative to SBRT but I do not equate my situation with yours.  With my first recurrence in 2012, I had scattered lung nodules in both lungs, as well as a positive para-aortic node.  I was judged terminal and I received palliative radiation for the para aortic node and was placed on high-dose progesterone as a possible life extender.  The radiation knocked out the cancer in the para aortic node (never to recur so far) and the progesterone appeared to eliminate the lung nodules.  That held until 2017 when I recurred again, but this time, fortunately, the chemo returned me to NED status.  Following surgery in December 2020 to remove a peripheral lung lesion that had been growing slowly for 3 years, and a positive pathology, I had SBRT in February on the larger of 2 small nodules in my opposite lung.  The doctor said I could have repeated treatments in the area, if necessary.  Now that I know these nodules in my lungs have aleays been malignant, I am heartened by the fact that SBRT is an option.  I have a scan in late May; I'm confident of the SBRT because I've responded well to conventional radiation therapy twice.  I will be following you closely on your Keytruda journey.  I think you are a better candidate than I.  Although my genomic analysis identified Keytruda (and the companion whose name escapes me right now) as a possibility for me in the future, it doesn't seem like I am the optimal profile for it.  Best wishes to you as you continue your fight.  Oldbeauty

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2937
Joined: Mar 2013

Deb, I am sorry to hear what is going on but it sounds like your sister is a champion in your corner here.  Tools are out there to target MSI and SBRT is another one.  Continued prayers for you dear warrior!

Dak82's picture
Dak82
Posts: 92
Joined: Dec 2020

I did read up on SRBT as a potential option for larger tumors. My sister was madly messaging me about why there hasn't been a trial combination of radiation and immunotherapy. I am heartened by those on this forum who have been through this. For the first time I was forced to face the fact that the end result of my treatment might not be "cured". I've had to reasses my whole outlook. I honestly started thinking I could be dead in a year--less if this doesn't work. But then no one likes a pity party and so I decided to pull up my bootstraps and fight like mad. It's all I can do. But part of this reality is that I can't really do a whole lot by myself--it does take an army.

Still awaiting word on biopsy date and have minor surgery--I guess--to address ureter problem. I'll keep you posted.

God bless all of you here who offer your hearts to others,

Deb

SF73
Posts: 316
Joined: Oct 2017

Hello Deb

Here is a study published in Nature, one of the most prestigious science journals. 

https://www.nature.com/articles/s41598-019-54624-x

It classifies endometrial cancer based on its molecular characterizations. According to this classification 15% of the endometrial cancer patients do have MSI. What I find very encouraging in your case is that MSI patients have great prognosis. Figure 4 is especially striking. You may not respond to the standard care for endometrial cancer but having MSI definely qualifies you for a lot of promising treatments like Keytruda. 

Please don't be discouraged. Be a good advocate for your health and seek the right treatments for your specific cancer type. 

 

Dak82's picture
Dak82
Posts: 92
Joined: Dec 2020

We think so as well. My oncology team wants to have some testing done on the sample they get from my lung biopsy in a few weeks. My greatest frustration is the seemingly long time all this is taking. At the Tumor Board today the team examined the scans and believes the tumors there didn't grow, that what we are seeing is new growth. Well that didn't sound very encouraging at all! So I keep telling myself one day at a time and don't look to what lies ahead. It's hard for sure.

 

Deb

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2937
Joined: Mar 2013

Deb, my prayers are with you.  

Subscribe to Comments for "Lung metastasis"