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Thread: Hubby has Lung Cancer that has Most Likely Metastasized :(

  1. #1

    Hubby has Lung Cancer that has Most Likely Metastasized :(

    Hello All,
    I wrote a new thread earlier and the forum ate it when I clicked submit new thread because it had logged me out while I was typing it so, here I go again. (Fingers Crossed)


    I posted a thread in 2017 when we suspected he had lung cancer: Here is the link for that if anyone is interested in those details. https://www.cancerforums.net/threads...hat-is-growing

    They were able to do a needle biopsy contrary to what the surgeon had told us, (that info in link above) and it did reveal lung cancer. He opted to have the small tumor surgically removed by removing the lower lobe of his right lung BUT... Once the surgeon got in there he was unable to remove it because my hubby had too much scar tissue on his lung. The surgeon said if it was a huge tumor with a risk of getting outside and spreading that he could open him up, remove some ribs, etc, and remove it that way but due to the small size of the tumor, my hubby's poor health, including being a brittle diabetic, he didn't feel comfortable doing that or putting him through at that time, and referred him to a radiation oncologist. (my hubby refuses to have chemo).


    He had 5 rounds of radiation and the final x-ray showed that the tumor had shrunk to over half the size it was originally. The radiation oncologist said basically what the surgeon had said initially that the tumor is in a good location, appears well contained, nothing suspicious around it, so the chance of the cancer spreading shouldn't be an issue. He was thrilled with the progress that the radiation had made, as were we. We felt they found it early, it was a small tumor, we are hitting it hard, and it is responding well. He wanted to wait 6 months do a recheck, and see if the tumor was continuing to shrink, or growing again, then decide if more radiation treatments would be needed.

    It has been 4 months since his last treatment, and Friday night I took my hubby to ER for unrelieved chest pain. (He has heart issues, but this pain was different than any he had before and it came on suddenly, and would not let up). Shortly after ER arrival the pain actually moved down into his epigastric region-his gallbladder has been removed so my concern was that his appendix was about to rupture because my pain had been in the epigastric region, not on my right side, when my appendix ruptured.


    They 1st had to ensure it still wasn't heart related so when the EKG was normal, they did an x-ray to check for blood clots in his lungs. No blood clots were found, the right lower lobe tumor was even smaller than on the last check after radiation treatment, but they did see ground glass, and 1 enlarged lymph node in the lower right lobe of his lung where the tumor is at, and also another enlarged lymph node under his left underarm area both of which were suspicious for metastasis, but would required further investigation.

    Once they were sure it wasn't his heart, and that he didn't have a blockage or blood clot in that area, and because it was now epigastric area pain they did a CT scan on his abdomen. (my hubby has had what I call gut issues for about 4 years now Frequent sometimes multiple times a day vomiting, diarrhea, then constipation, nausea, pain, etc., and has had every test under the sun done, but they have not found anything to be causing his symptoms). The CT scan showed 1 very large 4+cm mass on each of his adrenal glands on his kidneys, yet the kidneys were normal size. Again suspicious for metastasis as the Hounsfield units were very high at 33 and 31 which most likely rules out it being adenoma.

    He has appointments with his GP, his Cardiologist, His Oncologist, His Radiation Oncologist, and his Pain management doctors all within the next week and a half. His Oncologist wants him to have a Pet scan prior to his appointment (if insurance doesn't deny it AGAIN-that's another story in itself). But we are so angry by all this. 4 years he has told them something was very wrong in there, and nothing was found throughout ALL those many, many, tests. (I suspect the large masses on the adrenals may actually have been his primary, and it spread to his lung due to the differences in sizes and symptoms, and not the other way around, but at this point it really doesn't matter which was or wasn't the actual primary location).

    What is important now is where to go from here? We've discussed a couple of options already, and whether it is or isn't cancer on the adrenals I think he is going to have the masses removed, if possible, if for no other reason than to hopefully get some symptom relief for the first time in 4 years. I really don't have any questions regarding this right now, but would like to hear from others that have had this and see what treatments they used, how successful the treatments have been, etc.


    This is just so heartbreaking as we thought we were kicking lung cancer's butt and would soon have this nightmare behind us, then this happens. It makes me want to just sit down and cry to see what he is going through and knowing how ill he is, but I know I have to be strong for him because if he sees me upset he will get upset, and he needs all his energy to fight the battle against this horrible disease.

    My thoughts and Prayers are with all of you who are battling any form of cancer. It has affected many of our family and friends too. I guess I just needed to talk to people who understand what we are going through. Any input is appreciated, or a simple Hello will be just fine too. Thank you!!

  2. #2
    Administrator Top User lisa1962's Avatar
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    Hello Crackerjack and sorry to have to welcome you back especially with the definitive diagnosis of lung cancer.

    You have provided a lot of information but perhaps you can provide details of the actual Lung Cancer diagnosis. Was it NSCLC or SCLC and any subtype offered at time of diagnosis. I ask only because it helps our members respond more accurately as treatment options vary and also vary from other types of cancer. If the biopsy definitively identified lung cancer, then, yes, you may be looking a metastasis of the disease.

    It's a tough situation for you and your dear husband especially when combined with existing other health issues and his denial of chemotherapy however, he may be a candidate for other treatment options but again, his other health issues may hinder if he is a candidate or not.

    Keep us posted and know we are here for you.

    Lisa

  3. #3
    Hi Lisa thanks for your reply. He has Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. I'll add that to my signature info. Thank you again and Have A wonderful Day.

  4. #4
    Moderator Top User IndyLou's Avatar
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    Quote Originally Posted by Crackerjack View Post
    EDIT: Can you tell me how to add it to my Signature please. Thank you
    If you click on "Settings" at the top of the page, you'll be taken to a separate page. Look for "Edit Signature" on the left side, click on it, and edit your signature as desired.

    Best wishes.
    Age 54 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  5. #5
    Senior User
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    My prayers are with you and your husband also as

  6. #6
    Senior User
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    My prayers are with you and your husband also as I am finding out first hand how heart breaking it is to think we are winning the battle and then it ends up kicking us in the butt again. My lung tumor was small and found early and because I couldn't have surgery I had 5 treatments of radiation which worked really well. Had checkups every 3 months and the tumor was shrinking. Nine months later several small masses were found which have turned out to be cancer again. I can sympathize with you, more tests, more doctor's, alot more questions, then if we are "lucky" hopefully some kind of treatment. I have been told immunology is my option but haven't started yet.
    I wish I had answers that would help you more. I would have the PET scan as this will help tell If other areas of the body are affected by cancer.
    So, here is my "hello" to you and your husband. Remember, you are never alone and you will find strength and a lot of understanding here.
    Linda

  7. #7
    EDITED: Thank you ALL It's been a rough week he has been in the hospital twice since last Friday. He went in Friday and released on Sunday for unrelieved chest pain that then went to the epigastric region. That's when they found that the cancer had spread. He got readmitted on Tues because his vitals bottomed out, his blood pressure dropped to 70/40, and he started showing all signs of infection, shock and/or sepsis, and I really thought I was going to lose him. Turns out he had pneumonia, and was going into kidney failure. Thankfully they got the kidney failure turned around with IV fluids, and the pneumonia treated with antibiotics, but then before he was released he had a dark tarry stool, his RBCs, and H&H labs were slowly but consistently dropping the entire time he was there this time.

    Between those level drops, and his dark tarry stool it appears he might have a slight GI bleed somewhere that none of the tests are revealing where-possibly a bleeding ulcer or perhaps one of those adrenal masses are trickling a small amount of blood? His GI doctor will need to scope him if it continues. He wanted to come home yesterday, and was doing well enough to come home, but I asked the doctor to go ahead and give him some blood before discharge even though his levels weren't quite low enough to require it per hospital protocol yet-His Hemoglobin was 7.3 and they don't usually transfuse a patient until they drop below 7. I was not about to risk him dropping below 7 during the weekend and being wiped out from the anemia, and possibly crashing again. The 2 units of blood brought his Hemoglobin up from 7.3 to 10 and he said he feels a lot better. I'm waiting for another stool sample that can be tested (because the other one could Not be because it was in the toilet water and he had thrown tissue paper in on it), to see if there is or isn't blood present then I'll notify his GI doctor when I'm sure it is so he can scope him and find out from where it is coming exactly. So the week has been a rough one.

    Also the test they did on him did reveal Another enlarged lymph node on the left side near his groin area. We're going to go see the cancer doctors next week thankfully, and OH Yeah the insurance refused to pay for the Pet scan so we are having to appeal that too. Thanks again for all your helps, and support. I think I've been running on adrenalin since last Friday, or perhaps it's just some much worry, and a big lack of sleep. Have A nice night.
    Last edited by Crackerjack; 09-01-2018 at 02:38 AM. Reason: To add Details of recent hospital admission
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  8. #8
    Thank you Indy and LLC I appreciate it.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  9. #9
    Quote Originally Posted by LLC View Post
    My prayers are with you and your husband also as I am finding out first hand how heart breaking it is to think we are winning the battle and then it ends up kicking us in the butt again. My lung tumor was small and found early and because I couldn't have surgery I had 5 treatments of radiation which worked really well. Had checkups every 3 months and the tumor was shrinking. Nine months later several small masses were found which have turned out to be cancer again. I can sympathize with you, more tests, more doctor's, alot more questions, then if we are "lucky" hopefully some kind of treatment. I have been told immunology is my option but haven't started yet.
    I wish I had answers that would help you more. I would have the PET scan as this will help tell If other areas of the body are affected by cancer.
    So, here is my "hello" to you and your husband. Remember, you are never alone and you will find strength and a lot of understanding here.
    Linda
    Thank you so much Linda. I'm so sorry you are going through all this too. Yes it is very heartbreaking. Yours and his sound very similar in what has occurred. Prayers that you, my hubby, and anyone battling this horrible disease gets the treatment you all need and that you all kick cancer's butt.
    10/24/18 10:30 AM The love of my life passed away Today, and Life will never be the same again. RIP MY LOVE. I LOVE YOU FOREVER,, and MISS YOU SOOO MUCH ALREADY.

    10/16/18 Hubby was Diagnosed with Epitheloid Angiosarcoma High Grade, and was doing so badly that Hospice referral was made. .

    2016 My Husband DX with Stage 1 NSCLC not documented. They used Stereotactic Body Therapy (SBRT) radiation x 5 treatments. 8/24/18 Now has suspected lung Ca metastasis with Large 4+cm masses noted on each adrenal gland and 1 enlarge lymph node in the lower right lobe of his lung where the original tumor is located, plus scattered glass appearance in that area as well, and 1 enlarged lymph node under his left armpit area.

  10. #10
    Oh wow what a week you two had! I can imagine how bad it must have been. I hope they found out what happened inside him soon and he can be treated.
    I also got NSCLC who had spread to my lymph nodes. After two different chemo's i get Immuntherapy now with Nivulumnab and so far it works for me since two years. All Lymph nodes nearly down to normal and i still have a good quality of live.
    So please don't give up, the start and the waiting is always the hardest part.

    Best wishes, Petra
    Oct 15 diagnosed NSCLC stage IV , Mets in lymph nodes,
    Chemo 6 months, Tumour didn't grow but lymph nodes
    New Chemo 4 months, not working, new spot 4mm in Liver
    Aug 16, start Opdivo ,immune therapy
    CT Nov 16 , Tumor shrank, Lymph nodes shrank
    CT Jan 17, Tumor all the same, Lymph nodes on Neck and under arm back to normal, in Lung and Chest a bit smaller
    July 17, 2x3 cm Brain Tumor found, removed in Surgery, now radiation on spot,still on Nivu
    August 18, all still same, living life every day
    January 2019 < CT said NED!!!!
    Fingers crossed

 

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