Good evening all,
My 79 year old mom, who lives with us, had a bout with diverticulits back in April, and never really bounced back. She's been losing weight, has not had much of an appetite and is weaker than usual.
Well, on a recent CT scan, this showed up: Liver: Elongated 17 cm with multiple, indeterminate, hypodense masses in the left and right lobes measuring up to 2.8 cm.
She had a VATS for a less than 1 cm adenocarcinoma in the summer of 2010. She declined chemo after the surgery. She also had a CT scan of her lungs last week which showed "abnormal curvililear band of scarring or atelectasis in the right base measuring 4.4 cm is indeterminate.
Could this possibly be a return of lung cancer? I am scared to death. My husband, with stage lV lc, can only sit or stand for a short time before his pain sends him to lie down on the couch (surgery on T12 met). As selfish as this sounds, I was counting on my mom to help with my husband when I go back to work in August (teacher).
My mom is on Medicare, and everything is moving so slowly. I assume she will have to have a liver biopsy, but after reading what CS has gone through, I just don't know what to think.
Can anyone shed any light at all on the above within legal bounds? I haven't been able to find much information on hypodense liver masses.
Blessings to all,
Holly
Reply # - June 23, 2013, 05:18 PM
Reply To: Liver Mets From Stage 1a???
Holly, just want to say I'll keep your mom in my prayers. Having Medicare doesn't make things slower, it just may be that's the next available appt. I have Medicare and have never had any problems with appts.
Take care, Judy
Reply # - June 23, 2013, 05:38 PM
Reply To: Liver Mets From Stage 1a???
Thanks Judy,
You know I appreciate your prayers.
You take care too!!!
Holly
Reply # - June 23, 2013, 08:17 PM
Reply To: Liver Mets From Stage 1a???
Holly,
I'm so sorry to hear about this development. Unfortunately, it's quite possible to get metastatic spread from stage IA NSCLC. Though the odds are favorable, the cure rate is about 75-80%, with most of the difference being patients who developed distant spread of disease some months or years afterward.
As you indicated, a biopsy of an accessible liver lesion is extremely likely to be the next step. Though it can have complications, it's most likely to deliver the information needed to figure out the plan from here.
Good luck.
-Dr. West
PS: You don't sound selfish for looking to your support network for help with your husband's care. You sound human.
Reply # - June 24, 2013, 01:44 PM
Reply To: Liver Mets From Stage 1a???
Thank you, again, Dr. West, for your knowledge and kindness.
Reply # - June 26, 2013, 11:27 AM
Reply To: Liver Mets From Stage 1a???
Holly,
I am very sorry to hear what is going on with your mom. Given what your husband is going through, its a tough situation!
When my husband was dx'ed we had been living with my mom for a number of years and her health had been declining so I know how difficult the situation can be. I felt selfish many times over for wanting to focus on Mark and not be torn between caring for the both of them so I can understand how you feel. But, as Dr West said, you are human and it's reasonable to feel the way you are.
I wish all of you, all the best,
Lisa
Reply # - July 11, 2013, 08:39 PM
Reply To: Liver Mets From Stage 1a???
Well, before driving 2 1/2 hours to take Vicente for brain radiation, I took my mom (who lives with us) to her Dr. The liver biopsy showed metastatic adenocarcinoma, pulmonary primary with mixed neuroendocrine features. She had had a VATS 4 years ago with a 1a. Her Dr had recommended chemo after surgery, but she declined :(
Update on Vicente: Intradural extramedullary mets keep popping up. He has one in Meckel's area which is causing quite a bit of pain and numbness in his face, and another one in his brain which isn't causing any problems. Three have shown up in his spine. He is receiving IMRT for 10 sessions.
I don't even know what questions to ask. You all have just been so kind to me that I wanted to do an update.
Blessings to all,
Holly
Reply # - July 12, 2013, 07:07 AM
Reply To: Liver Mets From Stage 1a???
Holly,
I'm sorry to hear about those developments. It sounds like IMRT is a very appropriate idea. Has chemo been suggested for your mother, or waiting on molecular testing? What's next for her?
-Dr. West
Reply # - July 12, 2013, 07:40 AM
Reply To: Liver Mets From Stage 1a???
Holly, I'm very sorry to hear of your mom's diagnosis. I, too, was diagnosed stage 1A 4 years ago. I had VATS and chemo wasn't even offerred. I had clear scans every 3-6 months. Last April, right after a clear lung scan, I started getting headaches that turned out to be a metastatic brain tumor. I don't know if chemo would have changed the outcome in any way, but I can tell you that I had 3 years where I felt great, didn't have to suffer any side effects of chemo, etc. I hope your mom had a similar experience with good health.
My thoughts and prayers will be with you and your family.
Reply # - July 12, 2013, 06:41 PM
Reply To: Liver Mets From Stage 1a???
Holly, I'm sorry to hear about all that's going on with your hubby and Mom. I hope you have some help and are not trying to do this all yourself. Wishing all of you the best. Take care, Judy
Reply # - July 12, 2013, 06:57 PM
Reply To: Liver Mets From Stage 1a???
So sorry to hear about all this Holly. . .but thank you so much for the update.
xoxo,
Laya
Reply # - July 12, 2013, 08:13 PM
Reply To: Liver Mets From Stage 1a???
Thank you all for your kindness and care; It has been, and is, so valuable.
Dear Dr. West,
We just found out yesterday that Mom's liver masses were lung cancer. The Dr didn't know anything about mutation testing. He urged me to go with Mom to her appointments because, "You know more about this than I do." This is thanks to your site and to the Inspire site. Bless you. I pray enough tissue was taken for testing. I asked Mom to make sure that she asked about this, but she forgot, and I was driving Vicente the 2 1/2 hrs to his appointment.
My husband is finally going to be treated (radiation) for the crippling pain caused by a tumor at L4/L5. He has had this pain since Jan, but all the Drs we went to said it was old age - even with his history. The medical community where we live completely missed the tumor there as well as one in his brain (on two MRIs). Now he is in so much pain, can't feel one side of his face, and constantly bites one side of his cheek due to numbness. Due to the tumor at L4/L5, he can't sit up or walk for more than a few minutes. We are so pleased with the treatment at Banner MD Anderson, that I am trying to convince my mom to travel the 2 1/2 hrs per day to be treated there. She says she's old and doesn't want to travel.
Sherry, I am so sorry for the situation in which you find yourself :( And Judy and Laya, your encouragement and support are priceless.
I have to be back to work on the 30th, and no, I don't know how to do this. People can help drive, but they don't know what to ask. I am so beaten down.
Love you all,
Holly
Reply # - July 16, 2013, 07:15 PM
Reply To: Liver Mets From Stage 1a???
Good evening dear people,
Dr. West, No, she doesn't have a treatment plan yet. Everything is moving in slow motion. She has her first visit with an oncologist tomorrow.
Can tissue from a liver biopsy be sent for mutation testing? My mom's liver biopsy showed a mix of adenocarcinoma of pulmonary primary and large cell neuroendocrine carcinoma. The gross description states that the specimen was submitted in formalin. It is indicated to be a left lobe nodule several 18 guage cores. The cores range from 2 to 1.5 cm in length and 1 to 2 mm in diameter.
Could this be used for mutation testing? She thinks it doesn't matter as she couldn't afford Tarceva on what Medicare pays.
Are there any other questions that I should be asking her oncologist? I have been driving Vicente the 2 1/2 hrs each way for radiation, and my brain is fried.
Vicente's pain is a little better. These intradural mets that keep popping up seem to respond well to radiation. I just pray we can keep on top of them; they grow very quickly.
Thank you for any insight.
Holly
Reply # - July 16, 2013, 07:32 PM
Reply To: Liver Mets From Stage 1a???
Holly, I just want to let you know you're in my thoughts.
Debra
Reply # - July 16, 2013, 07:51 PM
Reply To: Liver Mets From Stage 1a???
Debra,
Right back at you!
Holly
Reply # - July 16, 2013, 10:14 PM
Reply To: Liver Mets From Stage 1a???
Yes, they can definitely use the tissue from a biopsy of a liver metastasis for mutation testing. And she and you should know that Genentech offers a copay assistance program or even free drug for many patients who can't afford it. If she happens to have an EGFR mutation, this agent has a significant probability of being so beneficial that it would be terrible to miss that opportunity. It doesn't look good for Genentech to have a very helpful drug that they've priced out of the range for patients who might benefit greatly from it, so there are often ways to get it through various programs.
Thanks for the update on Vicente as well. I'm glad the intermittent radiation approach is working.
-Dr. West
Reply # - July 17, 2013, 06:42 AM
Reply To: Liver Mets From Stage 1a???
Dr. West to the rescue again!!!!
I pray she has the mutation.
Thanks so much!
Holly
Reply # - July 17, 2013, 05:49 PM
Reply To: Liver Mets From Stage 1a???
Well, we got Mom's plan. The oncologist believes that because of the large cell neuroendocrine carcinoma that Mom has a mix of nsclc and sclc. He called the pathologist while we were there for clarification. He doesn't believe this is carcinoid as she doesn't have a single symptom for it.
She will have monthly three day infusions of carbo/etoposide. He said she is terminal but can extend her life. She just wants for time with the grandchildren.
Blessings to all,
Holly
Reply # - July 17, 2013, 10:24 PM
Reply To: Liver Mets From Stage 1a???
I don't think that finding large cell neuroendocrine necessarily implies that there is a combination of small cell and large cell carcinoma, but it's very reasonable to do carbo/etoposide, which would be a very fine choice for either large cell neuroendocrine or small cell lung cancer (also a neuroendocrine carcinoma), and which is also active for other NSCLC subtypes.
Good luck to her!
-Dr. West