Scared very scared

Waiting for liver biospy next week, to determine the type of agressive incurable lung cancer I have. Please forgive me if I do not use the proper words. I am still in shock. I was told surgery was not an option, that my disease was managable. Right now I have a tumor in my upper left lobe of my liver, a tumor in the upper left lobe of my lung, a hot spot in the left pelvis and one spot in the cervical upper note. They say chemo and immune therapy and other target drugs...I imagine I am stage 4 or IV will find out after the liver biospy. Any one been dealt this? I was completely healthly I am still am, The Doctor's say this is good. Do I have a chance? They told me I have years, not time definite line. Please encouragement, stories of folks that have lived with this? Thank you

43 Replies

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  • Don't give up hope! Stay strong and focused. We are here to help and support; call our support line if you would like to talk to someone one-on-one: freetobreathe.org/support

    Ruthie1950 g8rcliff Denzie Ricefam Collinjo1 tzfarr Jessi08 You all always have great words of encouragement and insight; any words for Kym105?

    -Travis

  • Thank you Travis

  • Kym105, I was in the same place as you nearly 2 1/2 years ago. The shock of discovering I was seriously ill while being generally healthy. Being told that surgery was not an option. And the waiting for the test results we needed so that my first treatment would be the best option.

    I think the waiting period you are in right now is one of the hardest times to endure. So much depends on that biopsy result, and it takes time to get it all set up and to get results. It took 9 weeks for me, from the day I got my diagnosis to the day I started targeted therapy. May your hospital not experience a major computer system crash that delays the genomic testing, as happened to me!

    Your medical team is telling you and doing all the right things. I'm impressed!

    Whatever is ahead, you are not alone, other people who are alive and kicking have had similar experiences are willing to share knowledge and experience with you. Please keep in touch!

    Anita

  • Hi Anita,

    Did you have small cell or non small cell?

  • Non small cell. I have an EGFR exon 19 deletion mutation.

  • Thank you for responding. I am glad to know you are doing well!

  • Thank you

  • Thank you Anita, do you know why surgery is not an option for cancer that had spread?

  • I still don't fully understand that either--surgery was/is not an option for me. If the cancer has spread to many places, they can't just cut all those locations. Surgery recovery would delay chemo treatment, too, which is likely the best treatment option available to tackle the cancer everywhere you have it. As stage IV metastatic, I know there could be cells (mets) anywhere and everywhere in my body that haven't started growing yet and chemo is what stops that since small nets are not detectable yet otherwise. That's my total non-medical understanding. Ask your doctors until they can help you understand, but know that the many questions you have right now are more than you can process and may take time for you to ask and understand .

  • Kym, once the cancer has spread outside of the lung itself, there is no way for doctors to be certain that they got it all. You body is probably seeded with microscopic cancer cells, and surgery will not slow them from developing into new cancer sites.

    Surgery itself, especially lung surgery, is an assault on the body requiring major resources to heal. There can also be long lasting symptoms of pain, shortness of breath, etc. Doctors are concerned with overall quality of life and do not want to subject you to pain, etc., if there will be no long term benefit - in other words if it is unlikely to extend your life.

    Hang in there, you will know the best treatment for you soon.

    Anita

  • Anita, if there is small undetacble cancer lurking does the treatments stop them from expressing and turning into cancer? Or does it slow down the progress of spread? Can the treatment recduce the size of the present tumors as well?

  • I believe that has been my experience (stage IV metastatic at diagnosis)...chemo reduced size of the cancerous nodes in my lung and lining of lung. It also reduced cancer in liver and adrenal gland so that they are not detectable now. I have had no new cancer show up which implies that the chemo is holding those mets steady (except in brain, which cannot be reached by LC chemo because of the careful protective barrier the brain has.be sure you communicate symptoms with docs and ask about MRI monitoring of brain).

  • Kym, effective treatment slows everything down - the development of new cancer sites and the growth of current ones. It is common for treatments to first reduce the size of current tumors, sometimes to the point where they are no longer detectable, then hold them stable for a while. Cancer is a powerful and adaptable disease, so most cancers eventually become resistant to treatment and start growing again. Current standards are that once a tumor has grown to 20% larger than it was at its smallest point during treatment, it has progressed and it's time to change treatments. Once you are on an effective treatment, your doctor will try to make it last as long as possible and exhaust its benefits to you before moving on.

    How long a given treatment will work for you is unknown. The doctor can give you averages, but some patients develop resistance sooner while others can use a treatment successfully for years. Here's hoping that you are a responder!

  • thank you that is a little more easier to understand how this works. So much to learn

  • And little by little you are learning it! It is a huge pill to swallow and we all start out feeling lost and overwhelmed . You are asking good questions. Keep asking!

  • Thank you Anita, I had my Brain MRI yesterday and my liver biospy will be at Brigham Women's Hospital on Dec 9th. My next appointment with the Oncologist is Dec 19th. I did tell them I do not want to waste any time in starting treatments, because of the fact it has spread and is in the lymph nodes. I am determine to get this done...It is so frustrating to know I am otherwise healthy but have my demons in my body, that can not be cured, but managed.

  • You should have biopsy results on the 19th and you and your doctor will have the info you need to start the best treatment possible. Hang in there! I am guessing that your doctor thinks that there is a good probability that you have a targetable mutation that will open the doors to some very effective and tolerable treatments.

  • Hi Kym105,

    Take one day at a time. I know how scary this has been as my Dad was diagnosed with an incurable, non-operable lung cancer too. He is Stage 3B small cell. He was diagnosed in May of 2016. He had many of the same questions as you- and things can change at the drop of a dime- so just have faith! You can get through this! Try and keep that mindset. Don't let this overcome your determination to beat the cancer. Just take one day at a time. I'm here if you ever want to talk!

    - Lesley

  • Thank you Leslie

  • Kym,

    It is very hopeful that you are in good physical condition. Also, your team seems to be very well informed and ready to plan your care individually. The waiting for the tests and their results is agonizing, but it gives your team the information they need to treat you in the best possible way for your particular cancer.

    This is all shocking and almost impossible to process, but please know that you have options and hope, and we are all here to support you. The experts in this community will be able to talk you through it all - so keep communicating, they know what they are talking about first hand!

    Will keep you in my thoughts.

  • They seem to be I am just scared because the lymph nodes are involived , I was shock to hear that there was a hot spot in my left pelvic, right where I broke it and then another in my upper cervical region where I have disc narrowing. I asked her if she was sure this was cancer. She did not answer and said we could do more scans?

  • Kym, I know you want answers yesterday...I would too. But if you trust your medical team, your doctor, you have to give them time to do this right (like Jennifer mentions below).

    If you need more scans, they will do that when the time is right. I also agree with Cliff - a second opinion is always a good idea, especially if you aren't completely comfortable with your team.

    Let me know if you need information on second opinions, or anything else (financial help, support groups, etc). pbezruki@freetobreathe.org or 844.835.4325 to reach me at the Support Line, if you want.

    Keep asking questions - you can see how generous everyone here is with their wisdom and support!

  • Thank you Peggy

  • Hi kym105,

    Sounds a lot like my diagnosis,I have been going crazy over all of the waiting also. I have found out so far my cancer is small cell, it's in my upper left lobe just outside the bronci tube. Also have small nodules in the other lung that have not been proven yet. It's been over 2 weeks since we found out for sure what type and no treatment yet. Found out yesterday it's not in my brain yet,and my liver and kidneys are normal and can stand the chemo. Now they want to do a pet scan to see if we have a chance toget it all in one radiation field. I'm screaming let's just do something it seems like we are trading daylight for dark as my grandfather always said.

    But all of the kind and knowledgeable people in this community have assured me this time is very important to get plan together . I'm sure they are right!

    Positive thoughts and prayer is also important,

    Best of luck, RW

  • the waiting is awful, but they have to be sure the "frontline" treatment is the right one. That treatment puts you on a path, and it effects if you are eligible for other treatments down the road if the cancer doesn't respond to what you try first. If you have a mutation that has a particular targeted therapy for firstline treatment, for example, you don't want to go through something else first if that other therapy could have been more tolerable and effective. (I assume you are having genomic testing on biopsy tissue). Patience is so nearly impossible, I know. Hang in there.

  • Well said!

  • Yes all of it, signed up for every clinical trial there is and I may even look at Cuba in the future. I know there is something out there for me. Just have to get my mutations in check

  • Thank you RW, so happy to hear it is not in your liver. It is in mind upper left quardant kinda big. My liver bisopy is next Friday the 9th. My liver and lungs are functioning like a well-oil machine. All my stats are ok, they say I am very healthy except for my demons. I had the pet scan this week this is when they confirm the liver. I pray it is had not spread to my brain. I pray there will be a treatment for me. And I pray there will be one for you too.

  • Your general good health (cancer aside) will work very well in your favor. And you seem to have figured out that not curable doesn't mean not treatable. I'm six years out now with stage 4 adenocarcinoma.

    This is an amazing time to be a lung cancer patient. In the 40+ years between President Nixon announcing war on cancer and 2015 there were something like 3 treatments approved for LC. In the past year we've seen 6 approved. We're making history here. There's no way to know how long the newer treatments will extend survival with good quality of life. And there are new generations of targeted drug therapies being tested as we write.

    We were all new to this cancer thing at one time or another so we are happier to be here to help you than you can imagine. When you know more about your specific cancer and planned treatment let us know and we will be glad to help you prepare and know what to expect. If you need resources to explore for radiation or chemo. We'll share our experience and resources.

    As Anita said, you are not alone.

  • Thank you Denzie, that is exactley what I have learned about all the advances in lung cancer today. Not that we are lucky to have it, but if so this is time to do so. Has anyone heard of stem cell treatment in lung cancer?

  • This link will take you to a search at Nat Cancer Institute at NIH.

    You can probably narrow it a bit.

    cancer.gov/search/results

  • Kym105

    Keep looking ahead! Seek the best available options and ALWAYS get a second opinion. It's kind of like climbing a mountain. You have worked your way up to a certain distance at this point and it's far easier to look back down the mountain and say "that's an easier route." The challenge is in front of you - not behind you. The information (biopsy) will be whatever it will be once you receive it. It doesn't change your focus. And YES - with otherwise good health as you described - your body has an outstanding opportunity to beat this beast!

    Cliff

  • Thank you Cliff

  • I understand that you are afraid, so was I in December of 2014 When I was told that I had lung cancer (stage 4) and given a year, maybe 2 by the Oncologist. I actually went home from the hospital and told my husband that I was going to pack up my belongings, so he didn't have to deal with it. The, one of my friends introduced me to Paula a lady with lung cancer and pancreatic mets who was without evidence of disease 3 years. She gave me hope, when I had none. I told her I wanted to do whatever she was doing. She recommended the book Anticancer a New Way of Life (yellow sicker), diet high in antioxidants, juice plus chewables, less stress, no sad TV (comedies only), prayer, exercise & surround yourself with positive people.

    Like you, I was healthy and my Oncologist (new one at Hillman in Pittsburgh , not the one that gave me the year) said that is why I have done well. I am ever thankful to God, I celebrated 1 year free of disease in my body this past September and I am without evidence of brain mets approaching 2 years after cyber knife radiation. The doctors are the helpers, which we need, but there is a Master Healer! Hugs and prayers your way. There is always hope

  • Thank you so much this give me so much courage to take this by the horns and plow through.

  • Well just understand that you are not alone...We are survivors here too, though personally not your extent, But survivors non e the less.....I am 1+ year out a Lung Cancer survivor, while My Baby sister is A Breast cancer survivor...But My Brother had Liver, Lung and Brain Cancers....9 Tumors...Not 100% sure which one started the other two...but He's a 2-year survivor now....His Treatment included Taking the small area on his kidney, Targeted Radiation for His Lung and Whole-Head, and Initial STRONG Chemo and now on 1 every 4 weeks Maintenance for awhile. The Great News is that ALL his Brain tumors have shrunk, more than half not even showing on the Scans now (Scans Every 3 Mos), the Liver is no longer Showing anything on that Scan, and His Lung Tumor (As mine as well) are just Scar Tissue....Latest Scan for Sister is negative, and she's on Maint. Chemo Also........

    My Point is that yes, you are fighting a multi-front War, But you Are not doing it by yourself, with support here, Family, Friends and staff. Nowadays, Cancer IS JUST A WORD...Not a Death Sentence any longer....and with the promises of Immuno-Therapy, the Sky's the limit....You Can Do it......You keep telling yourself that everyday day when you get up, and every night when you go to Bed. Me when I was Told I had Adenocarenoma in my Right Upper lobe, I just told myself It ain't gonna stop me, and while I was getting my Targeted radiation, I proceeded to Build a 14' x 20 Pergola for my wife.....I was Not going to give in to it.........The Mind, and I fully believe this, can be one of your best Allies......You just have to Believe that You're better than it.........

    I'm not a Religious person, but I do Believe in a Higher Being, and that That Being will look after us in times Like these...........

    Again, You Are Not Alone..........We Know You Can and Will Beat This.!

  • Do not search for statistics. Trust in your doctor's positive attitude. I was a very healthy 45 year old when diagnosed stage IV NSCLC in lung, liver, adrenal gland. Chemo with 2 agents and then chemo Maintanance with only 1 agent for the past 17 months. Cancer now not detectable in liver/adrenal and stable in chest (shrunk during double agent chemo but them maintained with single agent chemo every 3-4 weeks). I did have mets in brain, treated with radiation and now closely monitored, so the road has its bumps. Don't give up hope. Research is changing the landscape, too, so we can't guess what my coming up soon that will improve your response to treatment . Allow yourself to grieve and worry some, but ty to pick yourself back up and focus on the positive aspects-the people who love you, the professionals working so hard to take good care of you, the autumn leaves, and the fact it hasn't spread to any other places. My faith helps me a lot too. I'll pray for you

  • Logger Mike, your story of you and your family is a blessing for my ears. This is what I want, this is what I hope the treatments will do for me. I can not give up, I will not. I am shock because I can see myself with cancer. I do not feel sick. I do not have any answers either, but I have hope, determination and willpower to work through this. Thank you so much this means the world to me.

  • Kim

    I'm new to this wonderful and supportive site. I had lung lobectomy surgery in July and thanks be to God i do not need chemo. Your story has made me cry but the support of all these wonderful cancer survivors has bought me tears of joy and hope. God bless and heal you!! My prayers for all🙏💜

  • Thank you Faith, I never expected the news I got. Thought I would be like you, but that was not the case. I am still hoping, fighting and not giving up...

  • Thank you I am going to buy it for sure

  • Did you consider natural cures?

  • I have not because of the type of incurable cancer and that it has spread.

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