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Multifocal Adenocarcinoma of the lung, continual recurrences
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.
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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?
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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1 Reaction@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?
@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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1 Reaction@bluelagoon safe travels and may your visit be short!!
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3 Reactions@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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3 Reactions@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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3 ReactionsNancy, you are an inspiration, a survivor, us youngsters need people like you to remind us there is life after, during, and beyond cancer!!!!
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1 ReactionNancy (shorthshot) You do not need to explain anything to anyone if you don't want to. The battle you are in is bad enough to handle, without trying to explaining anything. I have two kinds of lung cancer... Not fun.. Drain one lung, and then try to stop the bleeding of the other one is stressful enough on one's sickie . Besides Most of the time no one cares what is going on with your illness. At least thats how I feel, Maybe it's my age. I will be 87 next week. Nancy
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1 ReactionI have a consult in the Jacobson Building Monday with a Dr. dawn Owen. My surgeon was there at Charlton.
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