Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Volunteer Mentor @merpreb, Dec 11, 2018

We have multifocal adenocarcinoma of the lung. @linda10 and @sakota.- Please join me in this discussion.

For a short explanation of this tongue twister. Briefly, Multifocal Adenocarcinoma (MAC) of the lung is a clinical entity of multiple synchronous (less than 6 months) or metachronous (more than 6 months), often ground-glass opacities (GGO) on CT scan, typically indolent-behaving cancers. There is a scarce amt of clinical data to guide treatment decisions.
This came from http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e20041.

This means that more than one potential cancerous lesion, mostly ground glass, shows up at a time. For instance I had 3 cancerous lesions 10 years ago in my left lung and in the same area. They were all different sizes. They grow at different rates.

Multifocal adenocarcinoma is a very complex cancer because the medical profession doesn’t know if the ground glass lesions are the primary cancer or small metastases of another primary cancer. They don’t even know where they start..

Multifocal Adenocarcinoma has sub types and it’s management is based on whether it’s indolent or very virulent.

These are very simplistic explanations. Even doctors are confused by it and it’s only been within the last twenty years that they have separated it from a Bronchioloalveolar Carcinoma (BAC).

The constant recurrences are the buggers. Not only do we have to constantly face lots of CT scans but when lung cells change, which they often do, we are in terror of another virulent cancer. I presently have several ground glass lesions. And I have had many that have disappeared. It’s enough to drive you nuts and PTSD is exacerbated by the frequency of these devils.

@sakota

Mer one was Prozac but can’t remember the other one. Joan

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@sakota– I didn't like Prozac. Give the new dose a chance. There are other drugs that can help it be added other than Prozac. It's nasty.

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Merry I had heard things about prosac that’s why I decided with staying on lexipro. I have a video chat with the neurologist at mayo on May 6. So will see what he has to say.

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@sakota

Merry I had heard things about prosac that’s why I decided with staying on lexipro. I have a video chat with the neurologist at mayo on May 6. So will see what he has to say.

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@sakota, members have shared their tips about video consults in this discussion, which may be useful if this is your first teleconsult.
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

I'd also welcome your tips or sharing your experiences for others after your consult in May. Joan, have you tried mindfulness?

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Thanks for all of your stories! I had a CT scan a couple of years ago and diagnosed with ground glass opacities. My pulmonologist said don't worry about it. It's nothing. He then retired about a year later, and now my PCP has me so scared that I should have been keeping on top of this. I've had some amazing doctors, but some not so amazing. In fact, one misdiagnosed my hyperplasia that led to endometrial cancer. Just have to put myself in God's hands. Going for another CT scan within the next couple of weeks, when I would rather not leave the house yet.

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@1952bear– Good morning and hello! I'm glad that you have found our Connect community. I can imagine how livid you are with this doctor and I'm glad that he has retired. Did your PCP know about the GG when it was first found? Did she get a report?

Ground glass opacities are not always cancer. Some appear and then disappear, some appear and stay the same for years. I have a couple in my lower left lung that have done just that. And then there are ones that grow. Multifocal adenocarcinoma lesions are usually slow-growing.
http://tlcr.amegroups.com/article/view/1608/2332
What has been the follow-up for your endometrial cancer? Did you have surgery and chemo?

Liked by bluelagoon

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@merpreb

@1952bear– Good morning and hello! I'm glad that you have found our Connect community. I can imagine how livid you are with this doctor and I'm glad that he has retired. Did your PCP know about the GG when it was first found? Did she get a report?

Ground glass opacities are not always cancer. Some appear and then disappear, some appear and stay the same for years. I have a couple in my lower left lung that have done just that. And then there are ones that grow. Multifocal adenocarcinoma lesions are usually slow-growing.
http://tlcr.amegroups.com/article/view/1608/2332
What has been the follow-up for your endometrial cancer? Did you have surgery and chemo?

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@1952bear– Good morning. I'm checking in to see how things are going.

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Going to MGH for a 6 month CT scan. Keep your fingers crossed! My follow-up will be next Tuesday on a zoom call

Liked by bluelagoon

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@merpreb

Going to MGH for a 6 month CT scan. Keep your fingers crossed! My follow-up will be next Tuesday on a zoom call

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Good luck!! I'm returning to Mayo next week for follow-up, had SBRT in March. Crazy summer, finished treatment for what the hospital here thought might be pnenomia or might be the cancer. Had extreme fatigue and trouble getting a deep breath. Better, but still not right, hope they listen to me. Also have a consult for thyroid nodules.
Driving this time, maybe will have a short visit, bringing Summitt with me.

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@merpreb

Going to MGH for a 6 month CT scan. Keep your fingers crossed! My follow-up will be next Tuesday on a zoom call

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@merpreb Sending my good thoughts. We were at Mayo last week for my CT scan and visit and all went well. With the lockdown, my 3-month visits were closer than my hair appointments!

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Merry, linda……….. Hi everyone, its been a while since I was in here …… just busy getting appointments done. Just got back from Mayo and the multifocal adenocarcinoma has returned. They have been watching it for awhile so they left the decision up to me to either let it go yet or get the radiation treatments.
I went for the radiation now as who knows, what shape I will be in later. My copd is getting worse. said my lungs are getting smaller due to the fact of curvature of the spine which doesn't let my lungs expand enough for me to get all the air I need. Then I had my colonoscopy and had three polyps but they were benighn…Whoope something turned out right. Sometimes I get so tired , then other times, I laugh and say ok, whats next on the list that I will have to deal with!!! Hope you all are keeping the faith, doing what you have to do and saying prayers for the good Lord to help us thru all this. My prayers for you all. Joan

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@sakota

Merry, linda……….. Hi everyone, its been a while since I was in here …… just busy getting appointments done. Just got back from Mayo and the multifocal adenocarcinoma has returned. They have been watching it for awhile so they left the decision up to me to either let it go yet or get the radiation treatments.
I went for the radiation now as who knows, what shape I will be in later. My copd is getting worse. said my lungs are getting smaller due to the fact of curvature of the spine which doesn't let my lungs expand enough for me to get all the air I need. Then I had my colonoscopy and had three polyps but they were benighn…Whoope something turned out right. Sometimes I get so tired , then other times, I laugh and say ok, whats next on the list that I will have to deal with!!! Hope you all are keeping the faith, doing what you have to do and saying prayers for the good Lord to help us thru all this. My prayers for you all. Joan

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Joan it’s so nice to hear from you! Happy to hear you are keeping on top of everything. It’s a difficult decision when you have multifocal lung cancer. I’m still waiting for the Mayo to schedule me back, however the area they’re watching on me seems to be enlarging scar tissue. I think as we age sometimes we become more tired. I find I’m more tired when I’m bored. When I have things to do I can be like the energizer bunny. When are you scheduled for your radiation? Prayers all goes well for you. Please continue to keep us updated on your journey. Hugs to all.

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Good to hear from everyone. Joan, what kind of radiation?? Wishing for a fairly short visit this time,lol. Leaving tomorrow early. Maybe it's scar tissue for me too. Do you ever just sense things??

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@sakota

Merry, linda……….. Hi everyone, its been a while since I was in here …… just busy getting appointments done. Just got back from Mayo and the multifocal adenocarcinoma has returned. They have been watching it for awhile so they left the decision up to me to either let it go yet or get the radiation treatments.
I went for the radiation now as who knows, what shape I will be in later. My copd is getting worse. said my lungs are getting smaller due to the fact of curvature of the spine which doesn't let my lungs expand enough for me to get all the air I need. Then I had my colonoscopy and had three polyps but they were benighn…Whoope something turned out right. Sometimes I get so tired , then other times, I laugh and say ok, whats next on the list that I will have to deal with!!! Hope you all are keeping the faith, doing what you have to do and saying prayers for the good Lord to help us thru all this. My prayers for you all. Joan

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@sakota, @bluelagoon; linda10, @meka– Hi everyone! Joan, are you having SBRT? How many sessions will you have? I'm dreading my virtual visit with my doctors tomorrow. I had my CT Wednesday. They are looking at a couple of areas in my lower left lobe. and my radiologist is keeping an eye on one of my SBRT sites because of scar tissue that keeps changing. If I have to have another zapping I think that my radiologist will put me on prednisone because I had a bad reaction to Proton radiation..lots of irritation in my lung. I'll know more tomorrow! It's been almost 3 years since my last one!

It's so great to hear from you all. Glad that you made it through the virus, so far at least!

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@merpreb

@sakota, @bluelagoon; linda10, @meka– Hi everyone! Joan, are you having SBRT? How many sessions will you have? I'm dreading my virtual visit with my doctors tomorrow. I had my CT Wednesday. They are looking at a couple of areas in my lower left lobe. and my radiologist is keeping an eye on one of my SBRT sites because of scar tissue that keeps changing. If I have to have another zapping I think that my radiologist will put me on prednisone because I had a bad reaction to Proton radiation..lots of irritation in my lung. I'll know more tomorrow! It's been almost 3 years since my last one!

It's so great to hear from you all. Glad that you made it through the virus, so far at least!

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Merry, good luck tomorrow!! No one mentioned bad reaction to proton as a possibility. Just keep trying to say, "oh what will I learn this time?"

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@meka

Merry, good luck tomorrow!! No one mentioned bad reaction to proton as a possibility. Just keep trying to say, "oh what will I learn this time?"

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@meka– All is good! the scar tissue from radiation has stabilized and is not a new lesion. The other one has only grown 3 mm in 5 years. Next appointment in 6 months!!!

Liked by linda10, bluelagoon

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