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Rhonda 58

Newly Diagnosed Adenocarcinoma

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Hi everyone,

Happy to have found this site, had my core biopsy last Tue, 3.6 cm adenocarcinoma upper left lobe. Have COPD, Fibromyalgia.Smoked for 35 plus yrs, quit 7 yrs ago. Had my pulmonary function test Monday to see if I will be a candidate for surgery. Will see oncologist on Thur for consult. Had CT head, no cancer. PET shows no other cancer but Dr said can't rule out bone yet, will need scan. The PET showed no lymphenopathy. I don't know if I can have surgery and Fibro/CFS so bad I am afraid chemo would do me in. I see such inspiration here so I'm hopeful and hope to get more answers Thu with oncologist. If he says I can't have surgery, would it be a good idea to get a second opinion at a cancer treatment center? I am in the Denton,Tx area, One last fear, I had a core biopsy with three cores, I'm afraid now it has been disturbed and may decide to get active, my thoughts are all over the place. I had a pneumothorax from biopsy but recovered well from that. Thank you for any insights.

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Hello Rhonda.  Glad you found us and are sharing your journey.  So far

it sounds like the cancer is confined to your Left upper lobe.  Hopefully

they will not find it in your bones either. 

The best would be if you are able to tolerate that lobe of lung to be removed with

the tumor.  How are you breathing now, do you require Oxygen supplement?

Chemo is tough but they have a lot of meds that will help with the side affects.

Also there is new radiation treatments that zoom in on the tumor and can be

very affective. 

Please update us and let us know how you are doing. Hope you have family and

friends close by to help you and to go with you to apointments and be an extra

set of ears.

Best wishes,

 

Donna G

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Thank you Donna, Yes, at this time it appears to be isolated to upper lobe.

I am on 2L oxygen nocturnal only since 5/2015. During the day my O2 sat usually 93/94 with no oxygen. I do have a great support system and husband goes with me to all appts. Congratulations on your 18 yrs survivor!!!!

Rhonda

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Hi Rhonda, 

Welcome to the LCSC message boards fellow Texan! I'd like to personally invite you to the Dallas HOPE Summit that LUNGevity will be hosting February 27th. You will have a full serving of HOPE and talk to others in the area who are going through similar situations. It's free, save your seats by registering here: http://www.LUNGevity.org/DalllasHOPE

 

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Thank you Cindy, I will register and hope to be able to attend. With FM and CFS I don't get out as much as I would like but would live to attend. Just being newly diagnosed I have so many questions. Very hopeful now as I see so many survival stories. I am going to TexasOncology tomorrow and did decide to get a second opinion at UT Southwestern Cancer Center inDallas. Have read teaching universities can offer so much more.

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Rhonda - welcome here.

 

I do look forward to seeing you at the Hope Summit also. 

 

You've got a lot going on.  As Donna indicates, you'll need to have a clean bone scan before surgery can be contemplated.  Have they tested your biopsy sample for genetic cancer mutations.  Adenocarcinoma is one form of NSLC that benefits from targeted therapy for tumors displaying certain mutations.  Here is Dr. Lesia Sequist's presentation on genetic tumor mutations for more information -

 

I've had a twelve year relationship with my oncologist and by chance I was fortunate enough to a GP who knew the right one for me.  Along with seeking a second opinion, pay particular attention to the persona of the various oncologists you associate with.  You will be choosing one for a long term medical association.  It is very important you select one you trust and get along with.  That becomes a decision factor you should consider your second opinion and perhaps third opinion consultations.

 

In my survivor experience, a surgical call was made by the thoracic surgeon.  Things may have changed since 2004 but I still think the surgeon's determination will decide the issue.  As a fellow Texan, I received all my treatment in the Dallas metroplex and there are a number of fine institutions to choose from.  But, I'd focus first on finding an oncologist you can trust and that you are comfortable with.

 

Stay the course.

 

Tom

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Thank you Tom, I have registered for the Hope Summit and look forward to it. I still don't know much since biopsy Tue except it is adenocarcinoma 3.6 cm upper left lobe, pet showed SUV 4.6 in lower lobe but they are favoring pneumonia- infiltrate over second mass. Everything I've been told has come from my Pulmonologist so far, meeting my oncologist, Dr Anand Sharma in Denton tomorrow. I agree with you 100%, we must have total faith in our doctor's, they are the key to our health. He has very good credentials and a lot of experience with lung cancer. Tomorrow will be first consult. I don't even know stage/grade till I see him. I don't think they have done genetic testing but just added that on my list of questions for him, thank you. Of course my family is pushing for the second opinion and I feel they are rushing me (everything already moving so fast, went from chest xray 11/24/15 to cancer Dx last week with CT, PET, Biopsy in that time) but I understand the need to move quickly just very overwhelmed as I am sure everyone on here is or has been. Feeling very blessed I may have got a early DX.

Thanks again Tom,

Rhonda

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I saw my oncologist today and he is going to be a very good fit for me. My stage is 1B, he is sending me to Mitchell Magee in Dallas for bronchoendoscopy to rule out mediastinal lymph involvement because he said my PET showed minor SUV but thinks it was a infection and if clear will stay stage 1B. He also said if it lymphs clear they can treat it with radiation and low dose chemo to resolve it completely and I can avoid lobectomy. Will just have to wait and see after the endoscopy. Tom, they are sending the biopsy out for genetic mutation testing, thank you for bringing that up.

Feeling very blessed right now!!!!

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Rhonda,

 

Now you're on the right track.   Your PET value was suspect in my mind but far better to hear it from a physician.  Stage 1 A or B is the best news a lung cancer patient can ever hope to hear.  Let's hope you have a good endoscopy result.  Look forward to meeting you at the DFW summit.

 

Stay the course.

 

Tom

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Hi Cindy,

Thank you for asking, like everyone newly diagnosed I'm sure I am just overwhelmed. Will be seeing my fifth doctor Friday in Dallas, with 11 visits between them since 12/02. I am hanging in there, eating healthy and resting when I feel like I need to. I did pick up my Pulmonary Function Test this am to fax to surgeon in Dallas, that will determine how they will proceed, surgery vs treatment. My consult is Friday then will schedule the bronchoendoscopy to check for mediastinal lymph involvement. The PFT result isn't good which I already knew, severe COPD and that is with me being on Advair 250/50 twice a day and Spiriva once a day.

I'm still positive and feel very blessed this was diagnosed early.

None of this is easy for any of us but we all do whatever needs to be done to get the monster out of us and see better health. I hope you are doing well Cindy!

Thank you,

Rhonda

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Thank you for updating us! Its good that you are eating healthy. We have a Healthy Living forum here too where I post healthy recipes. I hope if you have found some good recipes you will share them with us there. 

 

Best,

Cindy

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Hi Rhonda,

​I used to joke during those first few weeks of insanity, that if I could survive the crazy pace of doctors and tests, I could survive ANY thing this cancer could dish out!!

​My cancer was in my upper right lobe. I had chemo and radiation to shrink it and then surgery to remove the entire lobe.

​I had an X-ray, CT scan, biopsy and PET scan all done locally and most were done a day or two after the previous one. When I took all of that info with me to the cancer center was when it got crazy! I thought I was just seeing the one specialist. I went from him to the lab for bloodwork, then the PFT, a new CT, a quick visit with the medical oncologist and then to registration to schedule an appointment with the radiologist and for a bronchoscopy in two days!

 

I am not sure that I could have even found my way to the third appointment if my husband had not taken the day off to come with me!! I had brought a notebook so that I could write things down about not only what I was being told, but also to take notes so I could compose questions about anything that I didn't fully understand. By the time I was done I had questions about what I had written because my notes sounded like gibberish!! LOL!

 

​I am praying that there are NO nodes involved and they can kill that ugly little bugger easily.

 

​Be well,

Mary

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Hi everyone,

Cindy, I don't actually cook much, we sold our house in Illinois 7/15 moved to Texas thinking we would find another home to buy right away, haven't had much luck, low inventory, soooo we are living in our 38' fifth wheel in a very nice campground 10 min from my kids. I make green smoothies every day, avoid processed foods, fast food etc., I am not vegetarian but never been a big meat eater so use protein powder. Lots of veggies.

Tom, thank you, yes, looking forward to meeting everyone in Dallas at the summit, I know what you look like so will find you. I have tried uploading a pic for my profile several times with no luck, will have to use my pc instead of phone I guess, hope to get one posted soon.

Mary, thank you so much for the prayers!! Yes, everything so overwhelming keeping up with the Dr's and procedures then of course keeping up with the bills, some I pay at time of service, some I have to wait for bill, then of course you get a separate bill for anyone that touches you. I did then same thing you did, got a big composition notebook, set up tabs I needed and got a little more organized. I have a lot of ups and downs, one day a lot of anxiety, next day depressed, I'm sure that's all normal. Some days I find myself wishing for a rewind, a year ago I had a beautiful house on 2 acres in a rural area in Illinois, loved critter watching. Then my reality is if I had not sold my house and moved here and established new Drs right away this thing would have just kept on growing and I would not have had a early DX and then much worse situation. So no matter what, I know God has been working in the background leading me to where I am today. I don't allow myself to stay depressed, if it comes, I give myself a day to deal with it then shake it off and get back to living this great life!!

Sure sounds like you went through a lot too and I imagine we all have or will go through, part of the process, right? You didn't say how you are doing since the lobectomy but pray you had good results and are in a better place right now.

Thank you everyone for your words of encouragement, I feel a kinship to you all already and have learned so much on this site!!!

Blessings,

Rhonda

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Hi everyone,

I got great news today at the Cardio Thoracic surgeons office, he looked at everything and thinks I will be a good candidate for the VATS lobectomy. I will get some pre surgery labs and EKG and should have surgery in 1 to 1 1/2 weeks.He will take some lymphs, do a frozen during surgery and may decide to take more lymphs. He said my hospital stay should only be two days, maybe even one day, depends on when I get chest tube removed.

I am very happy about this vs radiation and chemo only as he says by taking the lobe it will get all the cancer.

I was worried my Pulmonary Function Test I had done last Monday would prevent me from having the surgery as it shows severe COPD but during the day my oxygen levels are at 97/98 without oxygen and he does not think that would change much with lobectomy.

Feeling very blessed!!!!

Rhonda

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Rhonda THAT IS GREAT NEWS !   Thanks so much for the update.

So I think you are saying that by the 20th of this month you may be home from

the hospital ! 

Looking forward to hear how you are doing. 

 

Best wishes, Donna G

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AWESOME!! So happy that you can have VATS!! It is a lot for each of us to deal with, no doubt! You have gotten some of the best news so far with this as well as the IA or IB staging! Mine was IIB and was Dx March 23, 2011 chemo & rad May & June with lobectomy the "hard way" Aug 2011. NED (No Evidence of Disease) ever since Thank God!!

 

I jokingly say the "hard way" because I had 2 surgeries in one. The first was a Neuro/Ortho Surgeon who had to break apart 3 vertebrae in my neck to get the tumor free, then the Onc Surgeon did the lobectomy and chest wall resection. NO one ever wants that "2fer" if they have any way to avoid it! LOL

 

The one thing I do hope we share is hearing those beautiful words that we shorten into NED and we ALL want to hear after every procedure, surgery and scan from here on in. Please keep us updated and stick around after you are all Happily NED ever after! You have to share your story to the next new person that pops in on us :-) 

 

XoxoX

 

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Thank you Mary,

I am sorry you had to go through all that but very happy to hear you are NED now.

I will definitely keep posting updates, as of right now I am still waiting to hear from the surgeon, I beat my actual films there that were being mailed from Denton to Dallas, Tx. He made his decision for surgery based on my radiology reports and PFT. He will make his final decision after looking at all my images then call me, hopefully today.

Blessings,

Rhonda

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Hi my name is Vicki.i'am 33 years old and was diagnosed with stage 4 lung adenocarcinoma in December 2015. Big shock to myself and my family I have 3 young children and want to fight this and be around to see them grow up. I'm currently receiving chemotherapy and got 2nd cycle this Friday after last week was postponed due to me being in hospital with pneumonia hope to make some friends on here and find support x

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Rhonda,

​I will keep you in my prayers extra often on Tuesday!! Just remember you want that ugly stuff gone ASAP!!

 

Vicki,

Hi! I am sure it was a HUGE shocker! Most people think of lung cancer as being for old guys with smelly stogies between their lips. Not that anyone deserves any kind of cancer, but 33, 40 or even 47 year old ladies are not the typical image that comes to mind. I have been STUNNED by how many young women are diagnosed out of the clear blue!! Girls/ladies in their 20s and 30s who jog, mountain climb, run marathons and all kinds of 100% healthy lifestyles. Not only do people like you and me not expect them to be diagnosed with lung cancer, their doctors don't expect it either. I have spoken to people who have been where you are. Many go through so many other diagnosis' like allergies and asthma and pulled muscles. It has happened to older people who quit smoking decades before too. My hubby saw it happen to his mom.

 

That is why people like me shout lung cancer facts every chance we get!! We need people to know MORE about lung cancer than they do about breast cancer, since they don't know much about that beyond pink ribbons and mammograms.

 

​I am sorry, I tend to babble.

 

Welcome to the group!! Please pop in often and let us know how you are doing! Share stories, ask questions or say most anything you have to say.

 

Both of you, be well!

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