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.

Interested in more discussions like this? Go to the Lung Cancer group.

@stanleykent

Merry,
I'm curious as to why you are waiting til June or after to receive SBRT.? Or do they want to see if there is a change during that period ?
For me, Pulmonary rehab has not been mentioned. I was given a Pulmonary Function Test prior to both surgeries and results were good. After both surgeries, I was encouraged to periodically use the provided Spirometer. My wedge surgery was two months ago and the sprirometer shows I'm back to pre-surgery levels. Through all of this , a Pulmonary specialist has not been mentioned or recommended . I'll have to ask the oncologist at my next followup. Thanks

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Good morning Stan- Due to the amount of lung tissue that I have left, because of my past lung cancers my team waits until it's absolutely necessary, without doing a biopsy, that my lesions will grow and need to be removed. Quite a sentence, eh? 🙂 I don't mind because if I wait until June, as my lungs heal from the radiation I won't be able to be very active. And during the summer months in NE, it's very humid and I have to stay in for the most part anyway!

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@merpreb

Thank you so much, Stan. I have Multifocal Adenocarcinoma and it is a rare (getting less so) sub- NSCLC. It consisted of multiple primary cancers rather than metastases and needs to be treated much differently. I've had this for many many years and the reason that SBRT would be used is that it's the safest, tissue-sparing treatment that will actually kill the lesion. It will be no more!

I'm not sure if they will do a PET scan unless they have to as part as the protocol. My team knows what needs to be done as I've had about 7 of these removed so far, including 2 lobes!

How are you doing? When was your last surgery?

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I now know I have multifocal adenocarcinoma also……. I had VAT surgery with 3.1cm nodule removed end of December. Stage was 1b because of size, lymph nodes negative, 1 cm margins negative. I have at least 3 more small nodules (one in the other lung) and GGO in both lungs. I am waiting for an appointment to be set up so I can get information on what my future treatment plan will look like. I am an active 80-year-old, and supported surgery well. I went from a chest x-ray . CT scan, PET scan to VAT surgery in 7 weeks. I didn't want to waste time. I have been reading some of your posts to try and figure out my future. I would like to go on vacation somewhere

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@vic83

I now know I have multifocal adenocarcinoma also……. I had VAT surgery with 3.1cm nodule removed end of December. Stage was 1b because of size, lymph nodes negative, 1 cm margins negative. I have at least 3 more small nodules (one in the other lung) and GGO in both lungs. I am waiting for an appointment to be set up so I can get information on what my future treatment plan will look like. I am an active 80-year-old, and supported surgery well. I went from a chest x-ray . CT scan, PET scan to VAT surgery in 7 weeks. I didn't want to waste time. I have been reading some of your posts to try and figure out my future. I would like to go on vacation somewhere

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Vic- You had me laughing out loud with your response! haha. After my second lobectomy that removed 3 lesions, I went to Paris. I climbed many stairs, walked all day long, and ate and drank. Yes, I was younger but I didn't let anything stop me. I didn't even think about cancer. If I were you I would take off and do what you want! If you chose to fly or take cruises please remember that COIVD19 is still around.

If you chose to fly make sure that you have clearance from your doctor. We had a trip to Israel planned. My long wished for trip. We had deposits down and our flights booked. We got nixed by my radiologist.

Vic, go where you can when you can and do what you can as long as you can! Can I come too?

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@merpreb

Vic- You had me laughing out loud with your response! haha. After my second lobectomy that removed 3 lesions, I went to Paris. I climbed many stairs, walked all day long, and ate and drank. Yes, I was younger but I didn't let anything stop me. I didn't even think about cancer. If I were you I would take off and do what you want! If you chose to fly or take cruises please remember that COIVD19 is still around.

If you chose to fly make sure that you have clearance from your doctor. We had a trip to Israel planned. My long wished for trip. We had deposits down and our flights booked. We got nixed by my radiologist.

Vic, go where you can when you can and do what you can as long as you can! Can I come too?

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Yes, this Covid thing is a pain in the butt. Obviously, people with lung cancer do not want to catch any type of Covid variant. And if one has immunotherapy, then one must be vaccinated prior to therapy and there will be boosters and updated vaccines. I want to go to Italy where I have friends to stay with – So your comment about clearance from doctor is important. Why did Radiologist say no????

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@vic83

Yes, this Covid thing is a pain in the butt. Obviously, people with lung cancer do not want to catch any type of Covid variant. And if one has immunotherapy, then one must be vaccinated prior to therapy and there will be boosters and updated vaccines. I want to go to Italy where I have friends to stay with – So your comment about clearance from doctor is important. Why did Radiologist say no????

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If you feel well then go for it! Because Israel is a pathway for many exotic diseases and warm and I had just had SBRT!

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@vic83

I now know I have multifocal adenocarcinoma also……. I had VAT surgery with 3.1cm nodule removed end of December. Stage was 1b because of size, lymph nodes negative, 1 cm margins negative. I have at least 3 more small nodules (one in the other lung) and GGO in both lungs. I am waiting for an appointment to be set up so I can get information on what my future treatment plan will look like. I am an active 80-year-old, and supported surgery well. I went from a chest x-ray . CT scan, PET scan to VAT surgery in 7 weeks. I didn't want to waste time. I have been reading some of your posts to try and figure out my future. I would like to go on vacation somewhere

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I have the same diagnosis. Multi-focal adenocarcinoma – possibly in situ, meaning the nodules in the glands could turn o to cancer someday, but they may not be now.
For me it was somewhat similar – I had needle biopsy of growing GGO, PET, and VAT wedge resection for two 1+ cm nodules in upper left – this all happened in 7 weeks, including changing from other cancer center to Mayo and their doctors and I insisted on moving my planned 12 day vacation up to take before the surgery.

I am 50 and very active. 4 nodules remain one in each lobe ((range .5cm – 1cm all GGO), but except upper left is now clear. I am now on a plan to repeat CT scans every 6 months. If changes or growth happen we will act on them, but if they remain stable we do nothing. At my first CT after surgery, all nodules remained stable – repeat CT in June. My pulmonologist said they could be nothing or they could eventually be something. My oncologist said to think of it as a marathon, not a sprint.
Nice to hear the surgery went well for you, it is one of my concerns as I get older too. While very scary coming up to it, the surgery was a breeze compared to others I’ve had. I worry how will I tolerate it if I have to do it at 60 or 70 or older. I decided, I’ll just be thankful to be alive still and cross that bridge when I come to it.
Best wishes to you on your journey.

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@jamineibs

I have the same diagnosis. Multi-focal adenocarcinoma – possibly in situ, meaning the nodules in the glands could turn o to cancer someday, but they may not be now.
For me it was somewhat similar – I had needle biopsy of growing GGO, PET, and VAT wedge resection for two 1+ cm nodules in upper left – this all happened in 7 weeks, including changing from other cancer center to Mayo and their doctors and I insisted on moving my planned 12 day vacation up to take before the surgery.

I am 50 and very active. 4 nodules remain one in each lobe ((range .5cm – 1cm all GGO), but except upper left is now clear. I am now on a plan to repeat CT scans every 6 months. If changes or growth happen we will act on them, but if they remain stable we do nothing. At my first CT after surgery, all nodules remained stable – repeat CT in June. My pulmonologist said they could be nothing or they could eventually be something. My oncologist said to think of it as a marathon, not a sprint.
Nice to hear the surgery went well for you, it is one of my concerns as I get older too. While very scary coming up to it, the surgery was a breeze compared to others I’ve had. I worry how will I tolerate it if I have to do it at 60 or 70 or older. I decided, I’ll just be thankful to be alive still and cross that bridge when I come to it.
Best wishes to you on your journey.

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Thanks, best wishes to you too. So far none of my reports have mentioned "in situ". Thanks for the explanation. Haven't you heard? 80 is the new 60. I guess it really depends on your overall health. They did an Echo stress test before surgery to be sure my heart would handle it. And consider I had just learned that I also have a blocked coronary artery that they wanted to put a stent in. However, that requires antiplatelet therapy for a long time and then one cannot do surgeries in that period. I was put on medication and am fine with that. I was told that with VAT surgery 95% of people go home after one night but I stayed two. I was "wobbly" the first day, but after did well. VAT surgery is a godsend for older people. The biggest annoyance for me is the nerve damage – but in the third week that began to improve a lot. I was to leave for Italy on Jan 18th but had to cancel as I knew I would not be back to 100% in 20 days.

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@jamineibs

I have the same diagnosis. Multi-focal adenocarcinoma – possibly in situ, meaning the nodules in the glands could turn o to cancer someday, but they may not be now.
For me it was somewhat similar – I had needle biopsy of growing GGO, PET, and VAT wedge resection for two 1+ cm nodules in upper left – this all happened in 7 weeks, including changing from other cancer center to Mayo and their doctors and I insisted on moving my planned 12 day vacation up to take before the surgery.

I am 50 and very active. 4 nodules remain one in each lobe ((range .5cm – 1cm all GGO), but except upper left is now clear. I am now on a plan to repeat CT scans every 6 months. If changes or growth happen we will act on them, but if they remain stable we do nothing. At my first CT after surgery, all nodules remained stable – repeat CT in June. My pulmonologist said they could be nothing or they could eventually be something. My oncologist said to think of it as a marathon, not a sprint.
Nice to hear the surgery went well for you, it is one of my concerns as I get older too. While very scary coming up to it, the surgery was a breeze compared to others I’ve had. I worry how will I tolerate it if I have to do it at 60 or 70 or older. I decided, I’ll just be thankful to be alive still and cross that bridge when I come to it.
Best wishes to you on your journey.

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@jamineibs – I can address your concerns and let you in on what you might see in your future. One thing that surgeons look at when surgery is considered is the location of the lesion in question, the size, and composition. They also look at how much healthy lung tissue you have and if the lesion is actually operable. If not (and you would have to ask your doctor why not) you most likely be offered SBRT. I have written about this and there are many many articles written about it. I have had it twice with two different types of beams. My cancer did not return.

My oncologist calls Multifocal Whack a Mole. lol But it's certainly an apt description! My last lobectomy, by the way, was in my early 60's and I rebounded very well. Remember, it all depends on how you have been living and what other illnesses, if any, you might have.

I was very fortunate that I didn't have COVID 19 around. But my upcoming, maybe SBRT will be during it and I'm sure that it will be a different world for me.

This will make my 6th cancer treatment, my 3rd SBRT. I might not have the same lung capacity as I used to but my life isn't over. I think that living harder after cancer is so important. By harder, I mean with more purpose. What do you think?

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@merpreb

@jamineibs – I can address your concerns and let you in on what you might see in your future. One thing that surgeons look at when surgery is considered is the location of the lesion in question, the size, and composition. They also look at how much healthy lung tissue you have and if the lesion is actually operable. If not (and you would have to ask your doctor why not) you most likely be offered SBRT. I have written about this and there are many many articles written about it. I have had it twice with two different types of beams. My cancer did not return.

My oncologist calls Multifocal Whack a Mole. lol But it's certainly an apt description! My last lobectomy, by the way, was in my early 60's and I rebounded very well. Remember, it all depends on how you have been living and what other illnesses, if any, you might have.

I was very fortunate that I didn't have COVID 19 around. But my upcoming, maybe SBRT will be during it and I'm sure that it will be a different world for me.

This will make my 6th cancer treatment, my 3rd SBRT. I might not have the same lung capacity as I used to but my life isn't over. I think that living harder after cancer is so important. By harder, I mean with more purpose. What do you think?

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Merry,
Wack a Mole. Sounds about right.
Living your best life with purpose is a must. I have share. The most amazing things happened to me in the couple years leading up to my cancer diagnosis. I have always had a pretty good life, not much to complain about except those thing I let hold me back from truly living my best life. You know those things you put off because your waiting for someone else or don’t want to spend the time or it’s too hard – whatever it is. Well, a couple years before, almost subconsciously I started checking off those things, those things that allowed me to live with more purpose. I don’t know that I even realized the shift so much until I got the diagnosis. I didn’t freak out or cry. After processing all of it, I realized the good Lord had been working in me and preparing me for that moment. I felt His presence so strongly it’s as if he were carrying me. I have no doubt, had I not started down the path toward living my best life, I would have freaked out worrying about all of those things I have pushed aside waiting for the right time, worry about running out of time, and resenting those people I felt held me back. Instead, i didn’t have to worry about any of that because I was already on a good path. I was able to remain calm and find out as much as I could about this disease, so I was able to make health care decisions based on facts and research and not irrational fear.

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@jamineibs

Merry,
Wack a Mole. Sounds about right.
Living your best life with purpose is a must. I have share. The most amazing things happened to me in the couple years leading up to my cancer diagnosis. I have always had a pretty good life, not much to complain about except those thing I let hold me back from truly living my best life. You know those things you put off because your waiting for someone else or don’t want to spend the time or it’s too hard – whatever it is. Well, a couple years before, almost subconsciously I started checking off those things, those things that allowed me to live with more purpose. I don’t know that I even realized the shift so much until I got the diagnosis. I didn’t freak out or cry. After processing all of it, I realized the good Lord had been working in me and preparing me for that moment. I felt His presence so strongly it’s as if he were carrying me. I have no doubt, had I not started down the path toward living my best life, I would have freaked out worrying about all of those things I have pushed aside waiting for the right time, worry about running out of time, and resenting those people I felt held me back. Instead, i didn’t have to worry about any of that because I was already on a good path. I was able to remain calm and find out as much as I could about this disease, so I was able to make health care decisions based on facts and research and not irrational fear.

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Your background in handling your diagnosis sounds more peaceful than mine. But, fear is a funny thing. I think of irrational fear differently than fear of the future, no matter the reason. I think that it's a healthy thing, this fear, that has us step back so that we can absorb what we have learned so that we can go forward. I never know what somebody's background is, so for me to make judgments, whether their fear is baseless or not, wouldn't be right. And I wouldn't know anyway.

When I first learned that I had lung cancer I was so scared, scared of the unknown, and of what the future would hold for me. I learned through this immense fear that if I dug down deep enough, deeper than ever before that I could be strong. I had to make myself more than I thought I knew how.

I thoroughly believe that learning about myself was as important as learning about my disease. I don't think that I could have done it any other way. That's the way I am. My fears came and came at me as an avalanche threatens a small village. I gagged myself from one appointment to another. Was this irrational? Probably, maybe not. Did it matter?

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I was going to ask if anyone had a persistent cough after VAT surgery and removal of lung nodule. But things change. It is now five weeks since my VATs surgery. I begin to have a mild dry cough just days after surgery, no big deal. But about five days ago, the cough became far more frequent and more "congested" with some mucous coming up. I called my surgeon's office yesterday, and they said get tested. I thought it was a waste of time, because I am literally a hermit, but I went to a drive-in testing place and at 8am this morning I got the news that I am Covid positive. I don't have a fever, and don't really feel sick, just the cough which seems better today than two days ago. I had my PFIZER BOOSTER at very end of September 2021. I qualified for emergency antiviral treatment, and it was delivered in two hours to my door. At least something works! I am currently on night oxygen, because my oxygen levels fell during night when I was in hospital. Anyone else had Covid in such circumstances?

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I was wondering if anyone with multifolcal lung cancer in this group has ever been offered targeted therapy to get rid of or reduce the remaining lesions they might have?

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