Hi all. These are difficult times, and I hope everyone is doing well.
Last week, I made a 14 hour drive to MD Anderson in Houston. My level of confidence in my team here is not the best, so I decided to seek a second opinion.
I understand that every system and process is out of whack due to the pandemic, but I left the hospital feeling out of sorts as I was just dismissed after the testing. I left last Wednesday and have heard nothing from anyone other than the test results that were posted to my chart automatically.
I received the bone scan and labs last night. I have never had the tumor marker which was pulled in Texas checked before. It was quite elevated, but who knows what it was prior to this visit. The bone scan was clear. Then tonight, I received the report on the CT. The first thing it mentioned was an indeterminate liver nodule which could be "followed clinically." It mentioned other cysts and hemangiomas that had been seen previously. I am really, really concerned.
Can anyone share a similar experience? Am I just going to have to live with this question hanging over my head until the next scan? Ugh
Thank you for any insight and please be safe.
Andi
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I'm glad you've sought treatment at such a great hospital. In my experience with similar top-tier facilities, they're much more "no nonsense" about results, e.g. I often see results posted before a doc discusses with me. I actually prefer this...I find the face-to-face a bit too dramatic, waiting for the big reveal. BUT, I've generally had someone sit with me within a day or two....which might not be an option for you, given the distance. So I agree that someone should have called you/should call you soon. I'd just phone them, if I were you...
Re: the liver nodule. I've got a couple/few liver and lung nodules that they keep on eye on. I call these "nits", i.e. little irregularities that generally mean nothing. I've had the same ones for five years, no change. BUT they watch them because you never know....so I'd not completely dismiss them, but I'd also not worry about them...
Thank you Lynn! That makes me feel better. I'm sitting here obsessing over every lab. It's maddening. I'll schedule an MRI in a few weeks.
I thought about you several times last week. Somehow it ended up that they stuck me 6 times for 3 tests. I actually gave up at one point and finally left throwing up with a migraine. I'm betting they've charted me as a "crazy lady!" I needed your JUST DO AS I SAY shirt!!
Andi, you made me chuckle -- and grimace! -- re: your needle-intensive week! And I somehow think that the "Crazy Lady" designation can be helpful in a way...
Thank you Sandra. I don't mean to be so reactive. I would love to be calm and cool like most of the other ladies. You are always such a comfort. Thank you for always sharing your knowledge and your level headedness!! I want to grow up to be just like you!!
Stay safe! Andi
Hi Andi,
I can understand your concerns. You should have been given some sort of explanation following your CT scan. The fact you weren't has just added to your anxiety.
I also have haemangiomas in my liver. When I was first diagnosed and I saw the full bone body scan the doctor showed me my liver as we passed through all of my body. I was told it could be haemangiomas, rather than a tumour. For a long time, my CT scan results seemed to suggest I had tumours in my liver, but that finally changed when they started reporting that they were most likely benign. Haemangiomas are benign, not cancerous.
Take care,
Sophie
Sandra, I just love when you put like actual science to my very, very fuzzy understanding of all things medical! What I call a "nit", actually has a real scientific name!
Thank you Sophie. They can sure find lots of ways to scare a girl. Apparently I have pre-existing cysts and hemangiomas. They classified this as indeterminate and weren't sure if it had been detected before. My AST has doubled and the tumor marker is higher than normal. Recipe for a perfect storm at 1 a.m.
I'll just have to wait for the scan. Hopefully it will be just another nothing!! You stay safe and well and thank you for your help!
You're welcome, Andi. I know what you mean. As if we need even more things to scare us! Like you, I have pre-existing cysts and haemangiomas that I didn't know anything about until I was diagnosed with breast cancer. Just after my diagnosis I was also referred to gynaecology, as my ovaries and womb looked suspicious. I was scared in case I had ovarian and possibly uterine cancer too (or metastases to those organs). An endometrial biopsy didn't yield any results, as the doctor didn't gather enough cells, so I had a hysteroscopy. It turns out I had ovarian cysts and uterine fibroids, all benign and nothing to worry about! It was such a relief when I was signed off from gynaecology and didn't have to go back.
I wish you all the best with your upcoming scan. I hope it will help put your mind at ease when you get the results.
Andi, I go to Moffitt Cancer in Tampa every six months. I have all the tests done the day before I see the doctor. That way the doctor has all the tests results before I see him. I also make my appointments early in the morning. If you go back, you might like to try that. You really need the tests before you see the doctor. MD Anderson is a great cancer center. I went there when I had breast cancer in 2000. I went for five years . I decided to go to Moffitt this time because it too is a great cancer center and closer and I will be going for life. Blessings Hannah
Hey Hannah, it was my understanding that I was to have an initial meeting with the care team including my new oncologist. Then, I was to have all the diagnostic tests run and meet back with the oncologist 2 days later to discuss the results (Wednesday to Friday). I was informed in my meeting with the doctor that she didn't work on Fridays. My tests were complete on the same day as my appointment, and I was actually able to leave for home that same day. I wasted two nights of a very expensive hotel room because I was told to stay for 3 days.
The CT report has now been published for over 24 hours, and I have yet to talk to anyone. A lot of Googling and I realize that my liver function value has doubled in the last 60 days. A couple of hours ago I got a two-sentence email suggesting that I have an MRI of my liver here instead of waiting until my next appointment. I would very much like to have a conversation with the oncologist, but I have a feeling that isn't on her agenda.
I'm sorry. Thank you for your reply. I'm glad you've found good care close to home. My stepdaughter lives in St Pete. What a lovely place! Thanks again for the words of wisdom...now to figure out how to apply them!
Andi, When you make your next appointment make sure that you have the tests done the day before the doctor's appointment. I have also done my tests first thing in the morning and had the last appointment on that same day. They won't make it work for you, you have to make it work for you. I have never talked on the phone to an oncologist at one of the big cancer centers but I have talked to his nurse. You might try that. I wish the very best for you. Lots of hugs and prayers. Hannah
I know how you’re feeling when we don’t have a definitive answer to what something is. I have been told on my latest CT I have a small something, .5x1.4cm on my omentum. I just had a PET. Nothing ever shows on scans, so it didn’t light up. My stomach where the cancer is doesn’t light up either. On this report it says there is haziness on the omentum, but they’re not sure what it is, to follow-up with a CT. Now I will have to wait three months. I have my appointment Monday with my doc. I’m sure I have to take the wait-and-see approach. I don’t think they can biopsy the omentum. My tumor markers have been in the 300-400 range since the beginning. I feel decent, so I just take it day by day.
Oh my! How do you manage the uncertainty? I remember when I naively thought that tests provided definitive answers. Ugh. No matter how many answers we get, it seems like more questions follow. I hope you get some clarification soon. I hope it helps knowing there is a community of us who understand! Best of luck when you speak with your doc.
Hi, Andi! I live a very busy life with work, my husband and daughter, family, and a new grandbaby. I stay busy and try not to dwell on what will be in the future. I’ve chosen to live day by day. I am not having the pain from my cancer as others do, and I am very grateful for that. I’m sure if there was pain involved, I may feel quite different. Don’t get me wrong, I have side effects from the medication (trouble sleeping, tiredness, and these stupid canker sores) and pain from my hips down from general things (I was in a car accident in 2013 and have pain that continues from that), but it’s not so bad I can’t move and work.
I don’t quite know how I manage not to worry about it. I’m not saying it’s not on my mind 24/7, I certainly think about it, and I even talk to my deceased mother and tell her I’m not ready to come see her. Lol. I look at my grandson and wonder if I’ll get to see him grow up, and I know if I don’t, he won’t remember me. My daughter was five when my dad passed away, and she doesn’t remember him.
I just want to live my days and be happy while I can. I truly wake up each morning and say thank you for another day. Time is flying by. My grandson was the greatest gift for me at just the right time.
I appreciate everyone here too because if I do have questions or need to talk to someone who understands, I come here.
And thank you for your well wishes. I appreciate it.
When report suggests that liver nodule “COULD be followed clinically” I would interpret that to mean a possible liver biopsy. Not sure I’d want to wait for next scan, as you may be candidate for different treatment protocol.
They have surely forwarded these results to your oncologist so I’d place call to his/her office and find out their recommendation.
Good luck in your pursuit of MORE INFORMATION. You are in my prayers!!
Thanks for the response. Still no reply from anyone. I tried to just schedule a tentative appt on my own to no avail. I finally broke down and sent an email with screenshots of the report directly to my radiation oncologist, because he is personal friends with my boyfriend. I'll get the scan one way or another!
I'm astounded it's so difficult to put together a care plan!! Thank you for the good luck wishes and the prayers. The very same from me to you!!
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