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Newly Diagnosed Adenocarcinoma - 40 year-old


Meloni

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Hello,

 

My name is Meloni (pronounced like "Melanie"), and I'm 40-years old. Last week, on February 15, my pulmonologist called me to confirm I have adenocarcinoma. The origin is my right middle lobe, and not large--1.3 cm; however, it has spread to some lymph nodes in my chest (I believe some mediastinal ones, but I don't recall which ones--the #s 3 and 7 come to mind).

 

My husband and I met with the oncologist on the 18th. Doc ordered an MRI of the brain, which is scheduled for tomorrow, the 23rd, and on Friday, the 26th, he will have reviewed the MRI, the PET scan (in more detail), consulted with thoracic surgeon and radiology doc (I think the nodes will be a big part of the conversation, but I know very little about nodes), and I think have more specific information about my staging and treatment advice.

 

I need to come up with a list of questions to ask, but I think I'm still in a daze. It's been a process. I went from patient-who-is-low-risk-demographic-for-lung-cancer-why-won't-she-leave-us-alone to oh-s**t-she-has-lung-cancer, and the transition has been a bit tough, even though I tried to prepare myself for the scenario. 

 

 

 

 

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Welcome Meloni,

 

A list of questions you say.  Well here are some good ones to start with - http://www.lungevity.org/support-survivorship/asking-right-questions.

 

Have you had a biopsy?  I ask that because you report your type as adenocarcinoma and the type of cancer is normally identified by biopsy.  

 

It sounds like you are on the go - no go surgery path.  The brain scan and PET scans are used to assess the stage of your disease.  Here is some material on staging - http://www.lungevity.org/about-lung-cancer/lung-cancer-101/lung-cancer-staging

 

When I went down the go - no go surgery path, my thoracic surgeon plucked a large number of lymph nodes throughout the mediastinal area because my tumor was so large, he found it hard to believe it was confined to my right lung.  When my wife heard the number of lymph nodes removed, she asked if that might be a problem and his answer was "don't worry, he's got plenty left."  Your tumor is 1.3 cm; mine was 8 cm long x 3 cm wide, almost filling my main stem bronchus of my right lung. Moreover, metastatic disease in lymph nodes normally shows up on PET scans.  So if it didn't, I think you might have a tumor in situ and that would mean an early find, and perhaps surgical removal.

 

You'll have many questions and feel free to ask away.  We are not doctors but most doctors haven't had the disease and we know what it feels like to have it and cope with it.

 

Stay the course.

 

Tom

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Good afternoon Tom,

 

I was just browsing the forum and realized I hadn't been very social in my intro post. I came back to remedy that, and saw your reply! Thank you.

 

In answer to your question, I have had a biopsy. After my x-ray in January, I had a CT scan, and then a pulmonary consult. Pulmonologist ordered a PET scan, "just in case". They figured my nodule was probably an old something or another from growing up in AZ (Valley Fever). The PET scan came back, and my nodule "kinda lit up" and some lymph nodes "lit up". Pulmonologist said it was probably inflammation or infection, but let's do a bronchoscopy to be sure (which I very much appreciate). The results of the biopsy confirmed that the nodule is lung cancer (adenocarcinoma), and the lymph nodes were confirmed as well. 

 

Thank you for the link to the questions, and thank you for the very thoughtful response.

 

Meloni

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Meloni,

 

OK - I understand now.  You've got an oncologist on board and you are going to a "results revealed" consultation.  Most important advice I can give is not to go to this consultation alone.  Most of my questions would evolve around treatment options and effectiveness of each option to eliminate my cancer.  There will likely be a range of treatments and a range of effectiveness.  You and your doctor need to make the right choice, for you.  Doctors I've encountered (my own and others where I've been the second set of ears) lay out a menu of treatments along with advantages and disadvantages of each.  

 

Stay connected with us and I pray you have the best possible news after your consultation.

 

Stay the course.

 

Tom

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Meloni

LOL! Like we have lung cancer and need to worry about being social. Well, first note that not a single surgeon, nor most of his staff really care about is YOU. Honestly. It's your nodules. It's your cancer. The surgeons do not care a whit. Other doctors are very different.

Barb J

Sent from my iPad using Tapatalk

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Thank you Barb and Tom!

 

My MRI was on Tuesday. Like the CAT scan, PET scan, and bronchoscopy, it was my first of that type of procedure. Very noisy, and I felt like Hannibal Lector when the placed the hood device over my head and face.

 

My next appointment with the oncologist is tomorrow, and it's been a test of patience, wondering what's going on in my body, and how my life will be changing.

 

Tom, you have mentioned genetics in some of your posts. Do you have some keywords that might help narrow my research regarding that? The doctors have asked about my family history, and it was tough to immediately answer because the father who raised me, passed from lung cancer at 48, but he was not my biological father. All of my siblings (1/2 siblings, genetically speaking), are cancer-free, but I am also the oldest. My biological father, whom I have only recently reconnected with, has disclosed that he has COPD (industrial exposure), his father passed from lung cancer, his paternal grandfather passed from a type of cancer, and my father's sister passed from lung cancer last year. I have no idea if that's relevant, but thought I could add it to the info if it would be helpful. 

 

Thank you for your help, and also about the notebook Barb!

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Meloni,

 

I'm afraid I can't help you much on the genetic front.  The small amount of knowledge I have relates to the new science of developing targeted therapy to attack certain subtypes of cancer that display mutations in their DNA.

 

My oncologist asked about my family history for lung cancer and also many other diseases.  I didn't have anyone who had it in my family.  That said, there is a book that you might read that provided me a wealth of information about cancer.  And, you may have some time on your hands that a good book might fill.  The Emperor of All Maladies by Siddharta Mukherjee is superb and there is a wealth of information about the genetics of cancer.

 

I hope your consult goes well.

 

Stay the course.

 

Tom

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Tom, thanks for the book recommendation! I've ordered Emperor of All Maladies by Siddharta MukherjeeI, as I suspect I'll have a lot of reading time on my hands.

 

Today is the big day. In about four hours, my husband and I meet with the oncologist to review the results of the MRI - brain, and discuss my prognosis, treatment, and, uh, stuff. I'm trying to keep my anxiety levels down, but it's tough. 

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​Meloni,

My fingers are crossed that you got the BEST possible results today!! I haven't been on for several days, but I see you were in good hands with Tom & Barb. Tom is a great person to get suggestions from :-)

 

​Be well,

Mary

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Thank you Mary, Barb, and all!

 

My husband and I met with the oncologist on Friday, as planned. In a nutshell, the brain MRI came back clean (nuttin' going on upstairs, <snicker>). The cancer has been staged as IIIA. Doc says treatment will be with the goal of remission and cure, and we are going to start with chemo and rad therapy, done concurrently. Tomorrow I meet with the rad doctor for the consult (6 weeks of therapy, but she'll give me the rundown); Tues my chemo port will be installed, and Friday I meet with the ARNP for an education in chemo. Treatment for both will start the week after (March 7).

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Meloni,

 

OK - you are typed, staged and locked and loaded for treatment.  You've already received some great medical advice - a port installation will make vein access a non problem!

 

For me, radiation was the inverse of March:  it came in like a lamb and left like a lion.  The first 2 1/2 weeks were a snap.  Then skin on my chest started getting red and painful and my throat became dry producing a non-productive, near constant hack.  Stock up on Solarcaine, Halls lemon drops, Chloraseptic, and don't hesitate to ask your radiation oncologist for the "magic mouthwash" elixir they often provide.

 

If your chemo is concurrent with radiation, it may be adjunct therapy.  It will likely be administered once per week and it will be a reduced strength.  Radiation is the killing agent; chemo cleans up the blood stream and attacks cells dislodged during radiation.  So, you may not suffer chemo related side effects at all.  I had taxol carboplatin as my adjunct, once weekly, treatment and had just a twinge of unsettled stomach about 3 days after infusion.  I didn't even lose my hair!

 

Use your smartphone calendar to track the onset of problems.  Also, some smartphones have notes apps that are really convenient for posting a "how I'm feeling today" daily journal.  You can use that journal when you have consultations with the radio oncologist or medical oncologist to discuss the onset and severity of side effects.  Timing is important because once you know how the chemo drugs are affecting you, the effect will be repetitive and taking mitigating medication just before onset of the problem is really helpful. Also use the note function to record all the medications and prescriptions (type, strength, dose) you are taking.  Even now, at my doctor visits, I just open up the note app and hand it to the nurse.  Your prescription status will become complicated. 

 

Now that you are in treatment, you'll need to have a "cancer calendar" (paper or digital) and a "cancer notebook" (paper or digital).  I use my smartphone for both but in the early days, I walked around with a paper calendar and notebook in a 3 right binder.  Your calendar will quickly become complicated so schedule management is essential.

 

Be prepared to be "knocked off your feet" the last several weeks of radiation.  I was so weak, I could hardly make it from the car to the clinic.  That was radiation's lion's roar for me.  I needed someone to drive me everywhere during the last 3 weeks of radiation and was pretty much confined to bed from an absolute lack of energy.

 

Eat a lot.  My appetite disappeared during the last 3 or so weeks of radiation and food I enjoyed developed unappetizing taste.  Tart foods like dill pickles, cranberry juice, grapefruit, key lime pie, and lemon-lime gummy bears became my late stage radiation diet.  This is the wrong time to go on a diet because you'll likely lose weight and your body will need energy in the form of calories to replace cells disturbed by treatment.  

 

Stay the course.

 

Tom 

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  • 2 weeks later...

Hello all,

 

It's been a chaotic time. I had lots of set-up last week. First chemo and radiation treatment happened yesterday, and my 2nd radiation was today. 

 

We met with the RAD doc on Friday, and he said that due to my good health and age, he'd like to be more aggressive and consider surgery after this round of chemo and rad. He'd also like to pursue the genetic / mutation / whatever testing, even though my Stage cancer isn't typically approved (IIIA), and he's going to try to get an exception, or work something out. You can really see he's thinking steps ahead, but I think he also wants everyone tested, and the "system" just isn't there yet. 

 

Anyway, I'm at work, trying to catch up with a few things. It also gives me some alone time. I'm feeling a little bit smothered. Everybody wants to talk about cancer. I'd like to talk about other things while I still feel kind of good. I see why Jesus needed 40 days and nights in the wilderness every now and again. : )

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Meloni,

 

Day one done, day two done, day three tomorrow, twenty-seven to go...  

 

Radiation for me was like walking into the wind.  Every day, the wind got a little stronger and I had to summon more energy to get through the day.  After all, the wind is just air and can't stop you.  You just need to have the will to persist.

 

Stay the course.

 

Tom  

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  • 4 weeks later...

Hi Meloni

 

It sounds like you got off to a GREAT start! I hope things are still going well and that you are getting both the space you want and the support you need. My prayers are still coming.

 

God Bless,

Mary

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  • 2 weeks later...

Thanks for checking back in, Mary. 

 

I just finished my 25th session of radiation today, and I'm scheduled for my 3rd chemo on the 19th (next Tuesday). I'm finished with radiation for now--I'll have a PET scan in early May, followed by a surgery consult to see whether surgery is an option. If surgery is a no-go, I'll be back to the radiation table. 

 

The chemo has been a bit rough for me. I've had a few extra hydration/anti-nausea sessions, because I tend to stop eating the first week of chemo, lose too much weight, and worry the doctors. Vomiting is one of my least favorite activities, so I might be hypersensitive to that sensation. :-)

 

Other than that, it appears that my blood counts recover nicely, although the ARNP notified me this would be more difficult over time, as my body gets hit again and again. I'm looking forward to kicking this stuff in the butt. 

 

Hope everyone is well!

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Meloni,

 

Wonderful to hear from you again!  Glad you are almost finished with treatment.  I hope you don't have too much scanziety waiting for your post-treatment PET scan.

 

You went down the same treatment path as me.  Pre-surgical radiation and chemo. Let us know what the post-treatment scan reveals.  If you are accepted for surgery, I'll give you my laundry list of surgical information.  For now, let's just focus on recovering your strength and hoping (praying) for a great post-treatment scan!

 

Stay the course.

 

Tom

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Meloni,

I'm looking forward to watching you "kick this stuff in the butt".  I've been reading and keeping up with your journey so far.  Sounds like you have a great team beside you and a good plan in place.  Best wishes for you during the nausea and side effects.  Hoping you recover swiftly.  Please keep posting and updating when you can,

 

Best hopes,

KaiteB

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  • 4 weeks later...

Hello Friends!

 

I had my Pet scan Friday, and holy cow was it tough to wait. I finally know what the "scanziety" is all about!

 

My surgery consult was today, and the surgeon was very optimistic. He said my scan looked "GREAT". He showed me the before and after scan, and it seems everything is smaller and not very "lit up" at all when compared to before. 

 

The surgeon intends to remove my right middle lobe, my affected lymph nodes, and any lymph nodes that are within the area of the right middle lobe. 

 

I'm scheduled for May 23rd. 

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Meloni,

 

A dim PET is a GREAT result from your pre-surgical treatment.  Wonderful News!

 

It sounds weird to congratulate one for being a surgical candidate but surgery is the best path to NED for a lung cancer patient.  Here are lessons I learned from my thoracic surgery.

  1. Have a complete discussion with your surgeon with his or her plan for dealing with post-operative pain.  Ask about specific medications intended for use.  Ensure they are listed on the admitting orders.
  2. Ask about how many post-surgical drains will be used and where they will be placed.  Ask how long they will remain in place.
  3. Buy some thick wool socks or better yet, Ugg slippers that are lined with wool.  Depending on the chemo administered, you may begin to notice discomfort (pain or burning) in your toes or feet.  The slippers are best because they act as a toe guard against the weight of your bed coverings.
  4. Go to local mattress shops and audition several wedge pillows.  You may find it more comfortable to sleep with an elevated head and chest at home while recovering from surgery.  Find the type you are most comfortable with and buy it online from say Amazon.  You'll get a much better deal online.  I find the high density foam to be the best for me.  Start sleeping with the elevated mattress a week or so before surgery to get used to the position,
  5. One of the biggest problems I encountered was a post-surgical infection.  Tell friends and family with cold symptoms not to visit you in the hospital or home while in recovery.  Especially, stay away from school-aged children until you are fully recovered.  A simple chest cold after surgery could put you back in the hospital.
  6. Eat vigorously and the right types of food.  Now is not the time to loose weight.

Post if you have questions.

 

Stay the course.

 

Tom

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