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.

@catlover1943

I’m new to group and looking for answers of what can be done for multi focal adenocarcinoma. I have no mutations and drs. Know chemo doesn’t really help but it seems to be their answer. I’ve had upper left lobectomy 2015, SBRT late 2016, and ct scans every 3 months since then. I have about 14 Or more nodules in left lower and 1in right. One in left lung is now 2.7cm, others still smaller. I live in small town in Michigan and am looking for 2nd opinion from U of M. Has anyone had chemo and has it helped? My nodules are considered indolent but seem to be growing faster than others that I’ve read about so I am getting more anxious as the months go by and may soon need to make some decisions as to treatment. I would go for SBRT again if that is a possibility. I understand what you all are going through physically and mentally and that does take its toll but I do feel that we are lucky that it is not a more deadly form of Lung Cancer and that time is on our side for them to come up with answers. Thank you for having this forum, as it does help to vent. Good luck to all and will welcome any info and maybe I shouldn’t be posting since I’m not at Mayo Clinic. catlover1943

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@catlover1943– Good morning. I'm sorry that my answer yesterday was so brief. I was recovering from a procedure that was unrelated to my lungs. I am a 23-year lung cancer survivor, 13 of these years have been fighting multifocal. I am being treated at Mass General in Boston. I have had my left upper lobe removed and that had 3 lesions, all different and all different sizes. I was offered chemo and took it. Several years later I had to have SBRT to zap the staple line of that removal. The chemo didn't work. It was cisplatin and navelbine.

Please, please make that call for a second opinion. I hope that you will get back to us and let us know how you fare! We are a small close group and welcome you with open arms. Each of us has our own story, some with more complications. You are always welcome here and I am glad that you found us. How else can we support you?

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@linda10

@merry we received approval yesterday morning and I began treatment yesterday afternoon. My last treatment will be on Monday the 5th. So far so good. Thanks so much for everyone’s support ❤️

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@linda10– I missed this post. How are you faring?

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@merpreb

Welcome catlover. Don't worry about not being a patient neither am I. I live in New England and use Mass General.

I personally think that you need a second opinion with another oncologist. Unless your Dr. Is afraid that SBRT isn't recommend because it's too close to another organ.

Can you get an honest answer from him why he's made that decision?

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Thank you Merry for the reply, my onc said SBRT could be a possibility, I have connected with U of M and can have a virtual in November. I will have CT scan in another 2 weeks so all will be up to date for them. Since I have already had SBRT I need to see how much more radiation I can have. Do you get biopsies when you nodules get large enough. I feel well and hope you do too.

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@merpreb

@catlover1943– Good morning. I'm sorry that my answer yesterday was so brief. I was recovering from a procedure that was unrelated to my lungs. I am a 23-year lung cancer survivor, 13 of these years have been fighting multifocal. I am being treated at Mass General in Boston. I have had my left upper lobe removed and that had 3 lesions, all different and all different sizes. I was offered chemo and took it. Several years later I had to have SBRT to zap the staple line of that removal. The chemo didn't work. It was cisplatin and navelbine.

Please, please make that call for a second opinion. I hope that you will get back to us and let us know how you fare! We are a small close group and welcome you with open arms. Each of us has our own story, some with more complications. You are always welcome here and I am glad that you found us. How else can we support you?

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Merry, just saw this post, I’m not good at finding my way around on my iPad. Question is I’m not sure if they call mine mult focal but will get those answers in November. Mine is called indolent but growing faster than what used to be BAC and ground glass has been used and also lipidic is in reports. My biopsy in 2019 did say adenocarcinoma and not much more and so I hope what I have can be cleared up and that will ease my mind just getting clearer answers. I have read that with earlier scans that they are seeing more multifocal cases so am hoping that they will be doing more research on how to help. I answered in another section before I saw this so will check this site out more closely as to where responses are. Beautiful fall here in Michigan as should be in Boston, enjoy. Sallie

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@colleenyoung

You are welcome here, @catlover1943. Connect is for all patients whether you get your care at Mayo Clinic or elsewhere. It seems to me that you are taking control by seeking a second opinion at U of M. Have you made the call?

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Hi, I am good at putting things off but finally made the call…my driver to U of M broke his leg and since my friends are all late 70s we don’t like driving that far. The oncologist that I wanted doesn’t do virtual but another one does so plan is to have my normal 3 month CT scan in a few weeks and then set up virtual for November. Thank you for replying, I hope you are doing well and I will check out how to navigate this sight now that I found it again. Sallie

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@hopeful33250

Hello @catlover1943,

As you can see from the post from @merpreb many of us are not Mayo patients. I too live in Michigan and go to U of Mich. for my cancer follow-ups. While I don't have lung cancer, I have found U of M care to be very helpful. Teaching/research hospitals tend to have the latest information in cancer treatment.

Do you have an appointment scheduled at U of M yet? I hope you find answers to your questions.

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Hello Teresa, I hope you have found answers for your cancer and they are able to treat it. I have contacted U of M and since I am due for CT in a few weeks we decided to aim for a virtual meeting( need to learn how to do) early November. I have never been to that side of the state and all of us late 70 year olds are not so good with such a long drive anymore. I was with a pulmonologist for quite awhile and first meeting he said you are one of the unlucky ones, you will have to do chemo as the nodules grow. Now with oncologist and with her and reading a lot I do have hope to make it to my 80s..am not ready to give up yet. I’m in Ludington and fall colors are just coming on the lake side, fall is so beautiful here. Lived in California for 40 years and no fall charges to speak of with their weather. Thank you, Sallie

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@catlover1943

Merry, just saw this post, I’m not good at finding my way around on my iPad. Question is I’m not sure if they call mine mult focal but will get those answers in November. Mine is called indolent but growing faster than what used to be BAC and ground glass has been used and also lipidic is in reports. My biopsy in 2019 did say adenocarcinoma and not much more and so I hope what I have can be cleared up and that will ease my mind just getting clearer answers. I have read that with earlier scans that they are seeing more multifocal cases so am hoping that they will be doing more research on how to help. I answered in another section before I saw this so will check this site out more closely as to where responses are. Beautiful fall here in Michigan as should be in Boston, enjoy. Sallie

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@catlover1943– Lipidic means "Any of a group of organic compounds, including the fats, oils, waxes, sterols, and triglycerides, that are insoluble in water but soluble in nonpolar organic solvents, are oily to the touch, and together with carbohydrates and proteins constitute the principal structural material of living cells."

I've had 2 SBRT's. They won't do it if it's too dangerous to another organ. Do you know what type of SBRT you had? Proton, Photon? No, biopsies aren't usually done.

Here is some information about SBRT for you.
https://www.uclahealth.org/radonc/faqs-sbrt
Have you done any research yourself about what your treatments are all about?

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@catlover1943

Hello Teresa, I hope you have found answers for your cancer and they are able to treat it. I have contacted U of M and since I am due for CT in a few weeks we decided to aim for a virtual meeting( need to learn how to do) early November. I have never been to that side of the state and all of us late 70 year olds are not so good with such a long drive anymore. I was with a pulmonologist for quite awhile and first meeting he said you are one of the unlucky ones, you will have to do chemo as the nodules grow. Now with oncologist and with her and reading a lot I do have hope to make it to my 80s..am not ready to give up yet. I’m in Ludington and fall colors are just coming on the lake side, fall is so beautiful here. Lived in California for 40 years and no fall charges to speak of with their weather. Thank you, Sallie

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Hello @catlover1943,

I'm glad to hear that you have an appointment with U of Michigan. I hope that you are as happy with your medical team as I have been with mine.

I live about a 40-minute drive from U of Michigan (I am in SE Michigan) so it is probably not as far as you. Will your CT scan be done locally?

I have done some video appointments with U of M and they will provide written instructions and suggest that you practice the process a bit before your appointment. You can also call for their support team if you do not understand the directions.

Do you have a grandchild/teen neighbor or other "techy-person" who might be able to help you get your computer set up?

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@merpreb

@catlover1943– Lipidic means "Any of a group of organic compounds, including the fats, oils, waxes, sterols, and triglycerides, that are insoluble in water but soluble in nonpolar organic solvents, are oily to the touch, and together with carbohydrates and proteins constitute the principal structural material of living cells."

I've had 2 SBRT's. They won't do it if it's too dangerous to another organ. Do you know what type of SBRT you had? Proton, Photon? No, biopsies aren't usually done.

Here is some information about SBRT for you.
https://www.uclahealth.org/radonc/faqs-sbrt
Have you done any research yourself about what your treatments are all about?

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Merry I have been reading the words proton and photon and will ask what I had in 2016. They just said SBRT would be 5 times every other day about the size of a quarter for my 1.6 cm nodule and then the next year I had 14 more nodules. Maybe I don’t have multifocal as I’ve had 3 biopsies and they are adenocarcinoma similar to the old term BAC which has gone to 4 classifications of AIS, MIA, lipidic and ? Mine are semi solid and lipidic(gel like) nodules that normally don’t metastasize outside the lung. The only treatments I have had are upper left lobectomy and the SBRT. Merry, I do a lot of research but no one has committed to say exactly what I have is called so I read about multifocal and BAC and am only guessing at this point. I hope answers will be coming from U of M. Thank you, I will look up hoot info on SBRT. Sallie

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@hopeful33250

Hello @catlover1943,

I'm glad to hear that you have an appointment with U of Michigan. I hope that you are as happy with your medical team as I have been with mine.

I live about a 40-minute drive from U of Michigan (I am in SE Michigan) so it is probably not as far as you. Will your CT scan be done locally?

I have done some video appointments with U of M and they will provide written instructions and suggest that you practice the process a bit before your appointment. You can also call for their support team if you do not understand the directions.

Do you have a grandchild/teen neighbor or other "techy-person" who might be able to help you get your computer set up?

Jump to this post

Yes, CTs are always done in home town but if U of M wants me to do different I will find a way. No children, small family just 1 older sister in another city. Good to hear they send instructions and are helpful at setting up virtual. I only use iPad but talked to a friend if they feel it Would be better on a bigger screen. I’ve done FaceTime on iPad which was simple but the terms virtual, video, zoom, teletalk etc all might be the same thing. In this day and age am wishing I had kids and grandkids as I’ve fallen behind in this tech age. Thank you and enjoy the fall colors.

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@catlover1943

Merry I have been reading the words proton and photon and will ask what I had in 2016. They just said SBRT would be 5 times every other day about the size of a quarter for my 1.6 cm nodule and then the next year I had 14 more nodules. Maybe I don’t have multifocal as I’ve had 3 biopsies and they are adenocarcinoma similar to the old term BAC which has gone to 4 classifications of AIS, MIA, lipidic and ? Mine are semi solid and lipidic(gel like) nodules that normally don’t metastasize outside the lung. The only treatments I have had are upper left lobectomy and the SBRT. Merry, I do a lot of research but no one has committed to say exactly what I have is called so I read about multifocal and BAC and am only guessing at this point. I hope answers will be coming from U of M. Thank you, I will look up hoot info on SBRT. Sallie

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@catlover1943– Good morning Sallie. It will be interesting to see if you have multifocal adenocarcinomas. They are adenocarcinomas similar to the old BAC, but also they are different in that they do not metastasize. Each nodule is considered primary cancers, no matter the size. My very first cancer, 10 years prior to a diagnosis of Multifocal adenocarcinoma was a BAC and very fast-growing. Multifocal and indolent-very lazy, slow, maybe not growing. This is good!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4209391/
After I get home from an appointment from my CT scan and results I start writing questions down for my next appointment. I don't care how elemental they sound.

How are you feeling?

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@catlover1943

Yes, CTs are always done in home town but if U of M wants me to do different I will find a way. No children, small family just 1 older sister in another city. Good to hear they send instructions and are helpful at setting up virtual. I only use iPad but talked to a friend if they feel it Would be better on a bigger screen. I’ve done FaceTime on iPad which was simple but the terms virtual, video, zoom, teletalk etc all might be the same thing. In this day and age am wishing I had kids and grandkids as I’ve fallen behind in this tech age. Thank you and enjoy the fall colors.

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@catlover1943– Sallie please keep me updated. I'm thinking of you. Stay safe.

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