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.

@vic83

If they have any covid symptoms, they should immediately get tested (and PCR test is the gold standard). If positive, they should call their primary care doctor immediately and tell them they have symptoms and make sure the doctor understands their health issues. In Minnesota (and I imagine elsewhere), the distribution of these FDA emergency approved medicines is controlled by the State, there are not enough drugs to go around, and they are distributed on a point system based on health conditions. And with my experience, realize this virus is far more contagious than people realize, take extra care including packaging and indoor spaces. Also check with doctor to see if they are eligible for the 4th dose(second booster)

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Vic Am glad you are doing well. I'm impressed by the response you received once were diagnosed with Covid and getting the viral therapy to you. I'm in Minnesota as well and have tried to wade through the dept of health web site to understand how to get treatment if needed or what kind. Extremely confusing. So expect I would go to my primary care doctor which is Allina and/or try to see if my Mayo Hematology and/or Oncology doctors can help. Anyway, I hope I don't ever need it. Also, I have my 4th Moderna shot scheduled for April.
On another subject, Prior to my last surgery, radiation and ablation were also mentioned/offered as a treatment for my lung nodule. Merry has commented a bit on radiation but I don't see cryo ablation ( freezing the nodule) mentioned much in this forum. Am wondering if you or anyone else has experience or comments on this as a treatment. Thank you

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@stanleykent

Vic Am glad you are doing well. I'm impressed by the response you received once were diagnosed with Covid and getting the viral therapy to you. I'm in Minnesota as well and have tried to wade through the dept of health web site to understand how to get treatment if needed or what kind. Extremely confusing. So expect I would go to my primary care doctor which is Allina and/or try to see if my Mayo Hematology and/or Oncology doctors can help. Anyway, I hope I don't ever need it. Also, I have my 4th Moderna shot scheduled for April.
On another subject, Prior to my last surgery, radiation and ablation were also mentioned/offered as a treatment for my lung nodule. Merry has commented a bit on radiation but I don't see cryo ablation ( freezing the nodule) mentioned much in this forum. Am wondering if you or anyone else has experience or comments on this as a treatment. Thank you

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Hi Stan. I too was impressed that they delivered the medication to my door two hours after my phone call!!!! I would contact your doctors on how to proceed to be prepared – I never checked MN site, but you could try calling around there too. There is a point system to decide who gets these emergency approved drugs, and my doctor's nurse (organized to do this) questioned me accordingly. I "passed" and got the medication. But sadly, there is not enough to meet the demand. Regarding your other question, I was just recently diagnosed with multifocal adenocarcinoma, and I had VAT surgery to remove the largest nodule six weeks ago. So, I won't know what is next until my March CT scan. I was told I am a classic case, and they will treat aggressively.

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@stanleykent

Vic Am glad you are doing well. I'm impressed by the response you received once were diagnosed with Covid and getting the viral therapy to you. I'm in Minnesota as well and have tried to wade through the dept of health web site to understand how to get treatment if needed or what kind. Extremely confusing. So expect I would go to my primary care doctor which is Allina and/or try to see if my Mayo Hematology and/or Oncology doctors can help. Anyway, I hope I don't ever need it. Also, I have my 4th Moderna shot scheduled for April.
On another subject, Prior to my last surgery, radiation and ablation were also mentioned/offered as a treatment for my lung nodule. Merry has commented a bit on radiation but I don't see cryo ablation ( freezing the nodule) mentioned much in this forum. Am wondering if you or anyone else has experience or comments on this as a treatment. Thank you

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Found this: Treatment options for pulmonary multifocal ground glass opacity type adenocarcinoma: Surgery combine thermal ablation? (Definition: Thermal ablation refers to the destruction of tissue by extreme hyperthermia (elevated tissue temperatures) or hypothermia (depressed tissue temperatures). The temperature change is concentrated to a focal zone in and around the tumor. ) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8562276/

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@stanleykent

Vic Am glad you are doing well. I'm impressed by the response you received once were diagnosed with Covid and getting the viral therapy to you. I'm in Minnesota as well and have tried to wade through the dept of health web site to understand how to get treatment if needed or what kind. Extremely confusing. So expect I would go to my primary care doctor which is Allina and/or try to see if my Mayo Hematology and/or Oncology doctors can help. Anyway, I hope I don't ever need it. Also, I have my 4th Moderna shot scheduled for April.
On another subject, Prior to my last surgery, radiation and ablation were also mentioned/offered as a treatment for my lung nodule. Merry has commented a bit on radiation but I don't see cryo ablation ( freezing the nodule) mentioned much in this forum. Am wondering if you or anyone else has experience or comments on this as a treatment. Thank you

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@stanleykent– Nice to hear from you again, even via Vic. What a great question you asked. This procedure is usually for debulking a large tumor in late-stage lung cancers. Other than that I do not have enough information to fully answer your question.

Have you researched this yourself?

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I am new to the multi-focal world. However, my thought is it is much like the skin cancers I've had removed. My Dr briefly discussed removal and said it would be laparoscopic. However, I still have tests and won't see her until July. Petscan showed a hot spot with an axillary lymph node and I had the biopsy done without conclusive results. The next step was an excisional biopsy, but the surgeon says it would basically be exploratory surgery with 30% chance of edema issues, since he couldn't palpitate it. I am trying for an ultrasound to see if the lymph node shows up differently. Not easy!

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@merpreb

@stanleykent– Nice to hear from you again, even via Vic. What a great question you asked. This procedure is usually for debulking a large tumor in late-stage lung cancers. Other than that I do not have enough information to fully answer your question.

Have you researched this yourself?

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Merry, Ablation was offered as one of the treatment options for my 7mm nodule and we met with an ablation radiologist and he explained the procedure. Based on my situation, surgery was the route we selected. But cryo ablation did seem like a viable option and was wondering if anyone else in the forum has had any experience with this.

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@marye2

I am new to the multi-focal world. However, my thought is it is much like the skin cancers I've had removed. My Dr briefly discussed removal and said it would be laparoscopic. However, I still have tests and won't see her until July. Petscan showed a hot spot with an axillary lymph node and I had the biopsy done without conclusive results. The next step was an excisional biopsy, but the surgeon says it would basically be exploratory surgery with 30% chance of edema issues, since he couldn't palpitate it. I am trying for an ultrasound to see if the lymph node shows up differently. Not easy!

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marye2, Hello, If you are willing to share, I am curious as to what your current diagnosis is and if you have had previous surgeries or treatments. From my experience I had the laparoscopic (VATS) surgery and removed the PET hotspot and they also removed /tested a few lymph nodes. Following surgery and lab analysis they were able to confirm their suspicions.

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@vic83

Found this: Treatment options for pulmonary multifocal ground glass opacity type adenocarcinoma: Surgery combine thermal ablation? (Definition: Thermal ablation refers to the destruction of tissue by extreme hyperthermia (elevated tissue temperatures) or hypothermia (depressed tissue temperatures). The temperature change is concentrated to a focal zone in and around the tumor. ) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8562276/

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Vic, Thanks for the article/link. The ablation radiologist I spoke with would freeze the tumor when in the lung. He said that heat was also used for tumors in other body organs. Take care.

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@stanleykent

marye2, Hello, If you are willing to share, I am curious as to what your current diagnosis is and if you have had previous surgeries or treatments. From my experience I had the laparoscopic (VATS) surgery and removed the PET hotspot and they also removed /tested a few lymph nodes. Following surgery and lab analysis they were able to confirm their suspicions.

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No diagnosis yet. The petscan showed a lymph node as "hot", but not the ground glass lesion! I had a needle biopsy of the errant lymph node, but there were no clear cut results. Then they advised an excisional biopsy of the lymph node, but the surgeon said that if they couldn't find it, the risk of edema, etc would go from 3% to 30% if they just took several nodes. I decided the middle route was an ultrasound of that area before surgery. All this has taken about 3 months; finally got the referral but no ultrasound until March 17. So, long story, short, I am still on the journey. I have nodules in both thyroid and lung.

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@marye2

No diagnosis yet. The petscan showed a lymph node as "hot", but not the ground glass lesion! I had a needle biopsy of the errant lymph node, but there were no clear cut results. Then they advised an excisional biopsy of the lymph node, but the surgeon said that if they couldn't find it, the risk of edema, etc would go from 3% to 30% if they just took several nodes. I decided the middle route was an ultrasound of that area before surgery. All this has taken about 3 months; finally got the referral but no ultrasound until March 17. So, long story, short, I am still on the journey. I have nodules in both thyroid and lung.

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Mary- I think that there has to be some solidity mixed in with the ground glass for it to light up, and also above a certain size. This must be very frustrating for you to have to wait. Well, I'm right next to you. I'm switching neurologists and can't see him until the end of March! 🙂

Have doctors mentioned which one they think could be the primary one?

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@stanleykent

Vic, Thanks for the article/link. The ablation radiologist I spoke with would freeze the tumor when in the lung. He said that heat was also used for tumors in other body organs. Take care.

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Hi Stan, you mentioned you decided to go the surgery route vs. ablation for a 7mm nodule. Can you share your decision process? I had one nodule removed 3.1 cm in Dec but next one is 8mm

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Thanks for the comment! I was wondering….I think they were hoping the right lymph node biopsy would be decisive. I unilaterally, but okayed by Dr, decided to see if an ultrasound would show any growth. It will be about 5 months since the Petscan by the time I get in.

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