Waiting now for a liver biospy and the... - Lung Cancer Support

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Waiting now for a liver biospy and the results of the Brain MRI.

Kym105 profile image
14 Replies

So I had the PET Scan last Wednesday of course as you know the results were not good. The lung cancer has traveled to the upper left lobe of my liver it is also in my left lung, possible two places in my bones. MY question is I understand that my cancer is not curable at this time, but can be managed. I hope that in the near future I will see something that will work for me. My question is this; when I tell people this , they say " or your terminal" did they give you a time frame" or they are just making you comfortable"....this sends me to the highlands...are they saying the truth? Is this what is happening and the Doctors are being cordial? Or am I worried to much? I want to live, I want a cure someday and I am willing to go that extra mile. For goodness sake I was not sick before Nov 11 2016. Someone give me some directions, are these folks correct?

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Kym105
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14 Replies

I would push doctors for better treatment options.

Am not 100% but am sure can cut bad out liver lungs but depends where is.

Bones is other story SO i would ask about stuff to stop spreading

Guess you know answer by how healthy and if you could with stand operations.

I would ask doctors as doing nothing is not option and is easy way out for them.

Kym105 profile image
Kym105 in reply to

They told me either the liver or the lung was not operable and it would not make a difference. I felt this was like a standard answer. I see them again on the 19th. I did push for quicker treatment. I did say well you can cut out the liver piece. They said no, so that worries me a bit. Maybe the tumor in the upper left quardant is too big. I have the liver biospy this week. I am going to compose lots of questions for both of them on the 19th.....

in reply to Kym105

I would ask about immuitherpy and stuff to stop it spreading.

Ad not ware anything that smaked at palitive care.

They should of run test to see what cancer the dealing with as to tailor treatment.

The can cure aids via boostng immune systerm yet cant bust it with cancer patients

Blood transufuons work in combination with immunty drugs

After all our greatest wepon is our immunty

scifiknitter profile image
scifiknitterBlogger

Oh, Kym, that was hard news to hear.

You are still waiting for the results of the genomic testing, aren't you? Those tests may reveal a mutation that will make you eligible for targeted treatment. Do you know what mutations you are being tested for? At the bare minimum, all patients who present like you should be tested for EGFR and ALK, preferably also for ROS1. Also immunotherapy was just approved in October as the first line treatment for patients without those mutations - you need to test for a biomarker called PD-L1 to eligible. You could call your doctor and ask what you are being tested for.

There are many diseases that doctors cannot cure, but can manage - diabetes, MS, COPD, a-fib - increasingly metastatic cancer is being added to that list, and patients like you and me are on the frontiers of that change. Scientific advances are being made very rapidly in lung cancer and the name of the game is staying alive and as healthy as possible so that you are still around when the next advance is made.

I've already told you that I believe that you have good doctors and one of the signs of that is that they HAVEN'T given you a time frame. It is impossible for them to predict the course of your particular situation - they don't even know what to recommend as the best treatment yet. Your friends are well-meaning, but they haven't wrapped their heads around the possibility that people can LIVE with cancer, it's not part of our cultural view of cancer.

You are a pioneer. You also already show a questioning, information seeking spirit that will serve you well.

Kym105 profile image
Kym105 in reply to scifiknitter

As of yet I do not think they have tested for any mutations but most likely will once they know what type of lung cancer I have. I will ask for all that you mentioned. I also feel we are on the front line of change and science. I never thought of myself as a pioneer I was a counselor, always helping others through the difficulites of life. Now it maybe me helping others to live which of course means me and you. I am not going any place yet not for a long time.

Thank you for giving me hope, sometimes I say I do not feel like I am cancer patient. Where did this come from, all I want is treatment to reduce the tumors and reduce the spread. I want to live...

FtB_Peggy profile image
FtB_Peggy

Kym,

People are often uncomfortable around illness, and they say things that don't help and may hurt. They don't mean to do that, their intentions are good, but they don't know what to say, so they fall back on lines they've heard - but that bear no truth.

I am sorry, we humans can just be awkward. Anita has given great advice, and I think you will soon have your answers, but don't ever hesitate to ask, ask, ask until you understand. If you have questions, find out if you have a nurse navigator on your team, or a social worker, they can help you out too.

Sorry about the hard news, but hope is still alive and your doctors are looking at the whole picture - it (sadly) takes time. But they have your back!

Kym105 profile image
Kym105 in reply to FtB_Peggy

Peggy, it seems that way but it seems so long, it has only been three weeks it feels like a lifetime. Thank you for the kinds words and encouragment.

Denzie profile image
DenzieModeratorVolunteer

Last week I attended an educational program. The speaker was G Kalemkarian, MD. He's the chief of thoracic oncology at U Mich Cancer Care. He made a point of stating that when he started in lung cancer specialization patient survivorship was never part of the conversation, but, today it is part of his daily conversation.

This concept is difficult enough for drs to absorb, all our lives conversations about lung cancer ended in death. People have a hard time wrapping their under educated minds around it. I've been accused of lying about my cancer and the fact that I am alive is proof of the lie. Ironically, my accuser is now in her second year of lung cancer survivorship. This is not a lesson I would wish on anyone. Ever.

You've an excellent attitude and that is extremely important. So is exercise and learning to respond to new signals your body will send. You can do this. Don't let them bring you down.

Kym105 profile image
Kym105 in reply to Denzie

Thank you Denzie , I notice that when I wanted to view my PET/Scan and then questions two suspious spots which were previous injuries and has should up before as hot spots but were deemed not.

The MD Fellow, said " are you sure you want to see this" I explained to her in my previous life this is what I did reviewed medical reports and test reports for my veterans who were on my caseload.

She also said to me, "well we knew you had a tumor in your liver" we did not want to say anything last week till the PET Scan". I told her do not ever hide or not say anything to me again. I then explain I read that original report and new it was not good and wanted to move fast on this.

I am a person who needs a battle map. Without this , the "truth" I can not fight this disease. I can not live. Then she said, "waitng two more weeks for Chemo or what they will do will not change anything"

I pointing out to her in two weeks I now have lymph nodes on the top of my right lung" there were not there two weeks ago! She said "well they have not pentrated the lung", I said I do not care we need to hop on this and slow it down...

I do not think I was being out of line. I am fighting to live, to manage as they say. I had no symptoms whatsoever. I am a fighter, I beleive in science and beleive that you have to try and keep trying...

RwHayes profile image
RwHayesCommunity Superhero in reply to Kym105

Right on kym105,

I am really getting tired of waiting also. It's been a month since my mass was found, it's been 20 days now I think since the biopsy, still no chemo. I just don't know how much longer I can wait before I go crazy. As of now I have no mets anywhere but this sslc has a nasty reputation of spreading really fast so I don't se why we can't just start killing it or at least trying before situation is a lot worse.

Wishing you well,

RW

FtB_Peggy profile image
FtB_Peggy

Kym

I am sure this time is endless for your right now, how could it not be, right? I am so sorry.

However, your attitude is great, your fighter approach and ability to advocate for yourself is priceless! Keep asking questions and getting the truth - not everyone wants to hear it all, but clearly that is how you make your "battle map", and I would feel the same. Let me know where I am then I'll do what needs doing....

Please keep fighting and keep talking with us - we care!

Faith17 profile image
Faith17

Hi Kim you sound like an intelligent amazing person. Oooh how i loved your answers to MD fellow you go girl. God bless and heal you 🙏💜

When I was diagnosed, i had and still have the attitude that before this I had no idea when I was going to die, it could be today, tomorrow or 50 years from now, I don't know. My diagnoses has not changed that at all. I think about it as much as I thought about it before the diagnoses. I believe in science, medicine, my doctors and myself will do all we can to allow me to make the best of my days, no matter how long they are.

Trust your medical professionals, not folks without the proper training and if you are curious, ask your doctor directly, he is the only one who can access that for you. Being how you were just diagnosed, your doctor probably is still accessing that and will it depend on how you respond to treatment.

GainesH profile image
GainesH

Kym105 my prayers are with you. Only God knows these questions. My husband had the same thing. He passed away last Thursday. God bless you

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