Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Alumni 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 Support Group.

linda10 | @linda10 | Jan 6, 2019

In reply to @meka "Start Friday at 9:40, blood, MRI, think CT Monday Dr..K, oh would have to look it..." + (show)

Meka I'm so happy that you made it to Mayo! They are the absolute best. Prayers you find some answers.

Justin McClanahan, Moderator | @JustinMcClanahan | Jan 6, 2019

In reply to @meka "No I haven't, but try again, would like to be closer than a mile away, Holiday..." + (show)

Hello @meka, you may find some of the conversations in the Visiting Mayo Clinic group helpful, https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/. I recently shared a PDF map with another member wondering about what hotels were connected to the downtown Rochester Mayo Clinic campuses. Here is what I posted:

Almost any hotel in downtown Rochester has access to downtown Mayo Clinic buildings via subway or skyway. Here are a few specific ones:

– Marriott Residence Inn
– Kahler Inn & Suites
– Hilton
– Rochester Marriott Hotel

Here is a link to the campus map, which includes a map of the subway system, https://www.mayo.edu/pmts/mc1600-mc1699/mc1663-55.pdf?_ga=2.60956907.67298372.1546544292-1675055088.1541027282.

Merry, Alumni Mentor | @merpreb | Jan 6, 2019

In reply to @linda10 "Merry, I believe Sakota is referring to the Kahler Hotels that are connected to the Mayo..." + (show)

@linda10- Ah ha! I've never heard of them. Thanks

Merry, Alumni Mentor | @merpreb | Jan 6, 2019

In reply to @JustinMcClanahan "Hello @meka, you may find some of the conversations in the Visiting Mayo Clinic group helpful,..." + (show)

Hello Justin- Thank you. I'm sure that this will be very helpful.- this needs to be spread around!

sakota9 (Joan) | @sakota | Jan 6, 2019

In reply to @merpreb "Sakota- What's a kayler?" + (show)

@merry. They are motels connected to mayo with walkways. Some of them are really expensive from what I have seen. I always stay at Hampton inn. South. They took care of me. Then last time a couple of ladies went to Hampton north to work. Soo I did too. I can find out more info about kaylers merry and let you know.

sakota9 (Joan) | @sakota | Jan 6, 2019

In reply to @sakota "@merry. They are motels connected to mayo with walkways. Some of them are really expensive from..." + (show)

Hampton is clean. Free breakfast shuttle service and special rate if you are going to mayo.

sakota9 (Joan) | @sakota | Jan 6, 2019

In reply to @sakota "Hampton is clean. Free breakfast shuttle service and special rate if you are going to mayo." + (show)

It’s kahler inn and suites. Kahler grandhotel. And the kahler towers

lisamb | @lisamb | Jan 6, 2019

In reply to @sakota "It’s kahler inn and suites. Kahler grandhotel. And the kahler towers" + (show)

My husband and I have stayed at the Kahler Grand and also Kahler Inns and Suites. The last few times when staying at the Kahler Inn we were very unhappy with the cleanliness of our rooms. We are not picky people but after the last visit we complained. It is convenient though when going to numerous appts at the clinic. Since my husband had a liver transplant in June of 2018 we now stay at The Gift of Life Transplant House which is a wonderful place to stay.

meka | @meka | Jan 9, 2019

Update, leaving tomorrow for tests on Friday and Monday. Decided to stay downtown at the Hilton garden inn, any energy would welcome, thanks so much!!!

linda10 | @linda10 | Jan 9, 2019

In reply to @meka "Update, leaving tomorrow for tests on Friday and Monday. Decided to stay downtown at the Hilton..." + (show)

Prayers for you! I hope you will find some answers

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