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.

@bluelagoon

@meka @linda10 It must be Mayo week- we leave tomorrow for my 2 year check on Monday. Hilton and Gonda for tests and appt. in am and then an unrelated check in the Eisenberg in the afternoon.

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@bluelagoon Wow! Best wishes on your tests! Nothing personal but I hope you are long gone by Wednesday when we will arrive 😊

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@bluelagoon

@meka @linda10 It must be Mayo week- we leave tomorrow for my 2 year check on Monday. Hilton and Gonda for tests and appt. in am and then an unrelated check in the Eisenberg in the afternoon.

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@bluelagoon safe travels and may your visit be short!!

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@meka

Wow, thanks for sharing again. Read some of the articles and now I'm wondering what are the questions that need to be addressed. Is this out-patient, follow up, after affects, what if recurrence, even more impossible for any future treatments.????
Been doing so good with my mental health issues and I have a real sinking feeling right now.
Also how do you explain any of this to others, hard enough getting anyone to understand the nature of the disease to start with.

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@meka, @sakota9, @linda10, @bluelagoon– Hello! It warms my heart that we are all together here! It must be a Mayo meet-up for sure. lol
My next CT scan won't be until mid-June. I'm hoping to be in Rochester in early June for the mentor meet-up but because of the virus, I will have to wait and see. You all sound upbeat. I'm in self-isolation. RI now has 20 cases of COVID-19 and within 30 minutes of me!
I found my SBRT a breeze compare to surgery but the recovery time is about 6 months for me. I really had to take it easy- nothing strenuous. But that might be because I have so much lung tissue damage.
Linda was the recovery from SBRT difficult for you? I was some tired!

Liked by bluelagoon

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@meka

Wow, thanks for sharing again. Read some of the articles and now I'm wondering what are the questions that need to be addressed. Is this out-patient, follow up, after affects, what if recurrence, even more impossible for any future treatments.????
Been doing so good with my mental health issues and I have a real sinking feeling right now.
Also how do you explain any of this to others, hard enough getting anyone to understand the nature of the disease to start with.

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@meka What are you telling your family and friends about your illness? How are you explaining to them that it is a chronic type of cancer?

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Haven't used the word chronic yet, guess I could try it, people seem to have one perception of cancer. What stage and how long do you have. Why aren't you getting chemo, you still look good, why haven't you been cured, etc, etc??

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@meka-I know, people mean well but don't always come across as they do. Their questions often sound nosy and not caring. As Nancy said you don't need to tell your story to everyone, not if someone sounds challenging (for whatever reason) you do not have to defend yourself. During treatments and tests and Dr's appointments we are all vulnerable because, I think, we have to go so darn often! You can always say that you do not want to talk about your cancer. You want to talk about happier things; not all cancers are treated with chemo; Stages are not important. Did someone really ask you this? how long do you have? OMG. a. How long do you have? b. Long enough for me to live my life out and have fun! c.‘I appreciate that this is of interest to a lot of people but I can't live or think that way. I'm being treated to live not to think about funeral expenses.
@linda10, @sakota, @bluelagoon – WHat kind of answers have you given?

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@merpreb

@meka-I know, people mean well but don't always come across as they do. Their questions often sound nosy and not caring. As Nancy said you don't need to tell your story to everyone, not if someone sounds challenging (for whatever reason) you do not have to defend yourself. During treatments and tests and Dr's appointments we are all vulnerable because, I think, we have to go so darn often! You can always say that you do not want to talk about your cancer. You want to talk about happier things; not all cancers are treated with chemo; Stages are not important. Did someone really ask you this? how long do you have? OMG. a. How long do you have? b. Long enough for me to live my life out and have fun! c.‘I appreciate that this is of interest to a lot of people but I can't live or think that way. I'm being treated to live not to think about funeral expenses.
@linda10, @sakota, @bluelagoon – WHat kind of answers have you given?

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@merpreb @meka I haven't had anyone ask anything like that but when i just stopped to think about it i realized it's probably because I've always been proactive with telling people what's going on. And i think that's because before I went through this I never knew anything and always quietly assumed the worst when someone else would get diagnosed. So, perhaps subconsciously I've been straightening them out before they can ask any annoying questions!

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@merpreb

@meka What are you telling your family and friends about your illness? How are you explaining to them that it is a chronic type of cancer?

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Nancy (shortshot) don't bother, if they want to know they can find out by one of many ways. No need to explain anything. Nancy

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@merpreb

@meka, @sakota9, @linda10, @bluelagoon– Hello! It warms my heart that we are all together here! It must be a Mayo meet-up for sure. lol
My next CT scan won't be until mid-June. I'm hoping to be in Rochester in early June for the mentor meet-up but because of the virus, I will have to wait and see. You all sound upbeat. I'm in self-isolation. RI now has 20 cases of COVID-19 and within 30 minutes of me!
I found my SBRT a breeze compare to surgery but the recovery time is about 6 months for me. I really had to take it easy- nothing strenuous. But that might be because I have so much lung tissue damage.
Linda was the recovery from SBRT difficult for you? I was some tired!

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My recovery was great! Little tired but not too bad. Most annoying side effect was thigtness above my chest. Felt like there was a steel plate in there sometimes. Not always. It lasted about 4 months.

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@merpreb

@meka-I know, people mean well but don't always come across as they do. Their questions often sound nosy and not caring. As Nancy said you don't need to tell your story to everyone, not if someone sounds challenging (for whatever reason) you do not have to defend yourself. During treatments and tests and Dr's appointments we are all vulnerable because, I think, we have to go so darn often! You can always say that you do not want to talk about your cancer. You want to talk about happier things; not all cancers are treated with chemo; Stages are not important. Did someone really ask you this? how long do you have? OMG. a. How long do you have? b. Long enough for me to live my life out and have fun! c.‘I appreciate that this is of interest to a lot of people but I can't live or think that way. I'm being treated to live not to think about funeral expenses.
@linda10, @sakota, @bluelagoon – WHat kind of answers have you given?

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Merry and Meka. I haven’t had any ask that specific question. I tell people what’s going on if I know the answer. I kind of clam up when I don’t know all the answers. I don’t like to be grilled. I just want love and support. Don’t want people feeling sorry for me. Want to love and laugh. So meka. Just smile. Change the topic if it bothers you and talk about what you want to talk about. Hugs to you.

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Morning @sakota– How are you doing? Are you still in treatment? I never had anyone ask me how long I had to live either. How did you handle telling people that you had cancer? I was very honest and straightforward. I was embarrassed but I went ahead and talked. At the time, though, I had a different lung cancer. When a second cancer, multi-focal hit me it was a different story. Most people already knew that I had had cancer and I think that people expected that the second one at some time in the future wouldn't be unusual, sad but… What really got my cockles up was when people told me that I could beat it, that I was strong, that God would see me through! grrr.

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@linda10

@meka maybe we will cross paths. Is your Dr in the Charlton Building? That’s where I had my SBRT.

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@meka thinking of you this morning. Stay positive and know we are sending you warm wishes. SBRT is really a breeze compared to surgery.

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@meka– I'm with Linda10 wishing you success! cyber hugs

Liked by linda10, meka

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@merpreb

Morning @sakota– How are you doing? Are you still in treatment? I never had anyone ask me how long I had to live either. How did you handle telling people that you had cancer? I was very honest and straightforward. I was embarrassed but I went ahead and talked. At the time, though, I had a different lung cancer. When a second cancer, multi-focal hit me it was a different story. Most people already knew that I had had cancer and I think that people expected that the second one at some time in the future wouldn't be unusual, sad but… What really got my cockles up was when people told me that I could beat it, that I was strong, that God would see me through! grrr.

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Hi merry I agree with so many things that you said especially about beating it. No one has that answer not even us. When i tell people i have cancer most just say how sorry to hear that and then i or they start talking other things. I go to mayo on april 22 for pulmonary testing and my ct scan so hope to answers on my left lung. You extra worried about the virus since we are high risk. I do what i can to protect myself and the rest is in Gods hands. My girls have been and are a great help. Hugs merry and keep in touch.

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@sakota

Hi merry I agree with so many things that you said especially about beating it. No one has that answer not even us. When i tell people i have cancer most just say how sorry to hear that and then i or they start talking other things. I go to mayo on april 22 for pulmonary testing and my ct scan so hope to answers on my left lung. You extra worried about the virus since we are high risk. I do what i can to protect myself and the rest is in Gods hands. My girls have been and are a great help. Hugs merry and keep in touch.

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Nancy (shortshot) You don't say how old you are and It doesn't make any difference. I am battling two different kinds of lung cancer . Each lung is different requiring different treatments.. Rally doesn't make any difference on how or what hapens. I'm 87 On this coming Thursday. So won't have to fight this too long I hope. Keep positive and follow your doctor's statements. God Bless. Nancy

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