Moonbeam Posted July 19, 2019 Share Posted July 19, 2019 Good morning all. So my husband’s cancer is indeed back. the preliminary biopsy is carcinoma in the lymph. He had his PET scan and EBUS procedure yesterday. The PET lit up at the chest and also, his lower back 😩. His pain in his back and hip area has been severe. Took him to the ER on Monday bc the pain was so bad and hasn’t slept at all. Up all night. Met with a neurosurgeon on tuesday, and he suggested an MRI and bone scan given my husband’s cancer. Anyhow, we came to this appt yesterday and after his EBUS procedure, his surgeon saw the amount of pain he was in and admitted him. They tried to do an MRI last night, but he couldn’t do it. Has a hard time laying down that long. They will try to do it again this am. my mind simply cannot think in the direction of cancer to spine. Just doesn’t make sense. I believe his surgeon told me it lit up at L5. That’s where the issue and other tests have shown problems. Really L2-L5. Nothing has shown up on his X-RAY or CT scans except, arthritis, Spurs, degenerative disc disease etc. no tumor has been seen so I just can’t see it being in his spine? And this soon and there???? I know cancer is unpredictable but ugh, just don’t know. on my way to see him and just holding it together, barely. Love him so and have loathed seeing him in such pain. XX and prayers Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 19, 2019 Share Posted July 19, 2019 Sending prayers your way Moonbeam. As difficult as having hubby hospitalized is, this is will accelerate the diagnostic process potentially saving him weeks of outpatient doctors, procedures and more waiting. I’m going to be straight with you, lung cancer can hit the spine, as it did in my case, HOWEVER the cancer is GONE now. There are treatment options available. Cancer is stupid, sneaky and sucks. Fortunately for us the doctors are prepared to fight too. Today might be an hour at a time day. We’re all here for you. Hugs... Michelle Link to comment Share on other sites More sharing options...
Moonbeam Posted July 19, 2019 Author Share Posted July 19, 2019 Tower Michelle - thank you for your quick response and being honest with me. His pain is severe and worse at night which is what makes me nervous. Would you mind sharing with me your symptoms etc when u get it in your spine. He’s off to MRI. Hoping he can do it. Tried twice last night but couldn’t do it. He’s feeling anxious but they’re giving him Ativan to relax him more. Look forward to hearing from you and thank you sooo much! Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 19, 2019 Share Posted July 19, 2019 Glad he’s off to the MRI fairly early. This is the sucky part for me, I had no symptoms at the time I was diagnosed. I had some very mild back pain early in the year which I attributed to getting back into the boat (after rowing on the machines all winter it’s a big transition to get back on the water. The primary lesion was on the T-9. The MRI gave the best diagnostic picture. I thought it was the end of the world, didn’t think I’d ever be able to Row again. Doctor said, I will have you back in your boat in a year. Viola- 9 months. We’ve got God and science on our side, a pretty good combo! Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 19, 2019 Share Posted July 19, 2019 Oh BTW- Ativan is the perfect way to do the MRI. I get something similar for all my MRIs. He might be really mellow as it takes a while for the drug to wear off. Best thing is sleep... Link to comment Share on other sites More sharing options...
Moonbeam Posted July 19, 2019 Author Share Posted July 19, 2019 Rower Michelle- His lit up on T5 . Does a PET light up always mean cancer? Meaning the light up detects cancer cells? Could it be herniated disc? 🤷♀️ Just want to prepare myself. Think I have though. he tried to have MRI and couldn’t do it again. They are going to put him out for it. My heart breaks for him. On my way back to hospital. Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 19, 2019 Share Posted July 19, 2019 Hey there- PETs can light up with injury or inflammation, so not always cancer. I was wondering if anesthesia was next. It’s all for the best.... Link to comment Share on other sites More sharing options...
Tom Galli Posted July 19, 2019 Share Posted July 19, 2019 Hang in there Moonbeam! I know you are on a horrible path but hopefully anesthesia will allow the MRI to be complete. Yes, a PET scan does in fact "light up" for inflammation. Did the doctor give you the SUV uptake value at T5? Stay the course. Tom Link to comment Share on other sites More sharing options...
Moonbeam Posted July 19, 2019 Author Share Posted July 19, 2019 Hi Tom - T5 uptake value - SUV max 30.7 what Does that mean? Link to comment Share on other sites More sharing options...
Tom Galli Posted July 19, 2019 Share Posted July 19, 2019 Moonbeam, Any SUV above 4.0 can be considered as an indicator of metastatic disease, so a SUV of 30.7 is likely cancer. Was the T5 vertebrae the only area to show a SUV return? Stay the course. Tom Link to comment Share on other sites More sharing options...
Moonbeam Posted July 20, 2019 Author Share Posted July 20, 2019 Tom...yes. Minus in the chest. Sending you his results. I’m at a loss tbh. Clear scan in April. How could it come to all of this??? Link to comment Share on other sites More sharing options...
Moonbeam Posted July 20, 2019 Author Share Posted July 20, 2019 Can’t figure out how at this hour with not a lot of sleep: Multiple hypermetabolic soft tissue masses/lymph nodes are seen throughout chest with some abutting the esophagus. One lesion measures 3.2 x 3.0 cm SUV max 22.6 non specific focal hypermetabolic activity in the left adrenal for which metastatic disease is. It excluded. SIV Max 4.0 then his lesion in spine. Then it says: there is a subcentimeter nodule in right minor fissure which may represent intrafissural lymph node ??? They claim it wasn’t there in previous, but something was! I feel like the ball was dropped months ago. See all previous posts and issues. ill answer all questions just need to know what to ask for moving forward. I'm absolutely heartbroken. I won’t give up and will find him the best care...trying to stay strong but good god, this was a whack! Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 20, 2019 Share Posted July 20, 2019 Hi Moonbeam- My thoughts are with you today. I wish I could give you a list of questions to ask, however Tom is right. The most important issue to clarify right now is the biopsy report. It’s really essential to find out if there is a biomarker where treatment can be targeted (also called molecular analysis, oncogene, or driver mutation). The hospital will likely test for EGFR, ALK and ROS1. They will also look for a immune checkpoint called PDL-1. If that doesn’t yield any answers, then the biopsy will need to be sent to a lab for further testing. At that point you will have a clearer picture of what comes next. You’re doing a great job advocating for your hubby. Hold onto your faith. Michelle Link to comment Share on other sites More sharing options...
Roz Posted July 21, 2019 Share Posted July 21, 2019 Moonbeam, Sorry to hear about all you and your husband are going through. Hopefully you will get some answers soon. Do you have others around to support you? I think that will be important...Sending you strength and positive energy. Ro Link to comment Share on other sites More sharing options...
LouT Posted July 22, 2019 Share Posted July 22, 2019 Moonbeam, I see you are getting great information here from people much smarter than I on the type of path your husband is on. I just wanted to tell you that we are all thinking about you and and you, your husband and family are in my thoughts and prayers. Lou Link to comment Share on other sites More sharing options...
Moonbeam Posted July 22, 2019 Author Share Posted July 22, 2019 Thank you all for responding. My husband was admitted Thursday and they are getting his pain under control so he can be discharged until our appt with his neurosurgeon. Tomorrow is a big day as everyone back to work and hoping to have team in place and somewhat of an idea of the next course of action. I have so many questions etc for them to answer and have been trying to gather as much as I can through all the sadness I’m feeling. The shock of it all hasn’t worn off yet or really gotten to a point where I can even wrap my head around it all. How this spread like this in less than 3 months has stopped me in my tracks. I’ve realized, in a mere minute, that “cancer is unpredictable “ is an understatement. It’s hard to not wonder what went wrong? What did we/they miss ? The doubting his treatment etc is not productive but wow, this cancer isn’t messing around. 😩 I’m heartbroken and so trying to stay positive and I’m ready to kick it’s *ss, but good god, this is some strong competition and I’m not even. Competitive!!! 🤪 I think I have some ideas how they should move forward However , he doesn’t have any mutations . Meaning they all in December came back as zilch! No reaction. They doing his “recent” tissue samples but took awhile for the first and I feel we have no time to wait. The clock is ticking! I’m angry. I’m sad and I simply cannot lose home. Have had far too many losses and he’s all I got! Link to comment Share on other sites More sharing options...
Nancy Ann Posted July 22, 2019 Share Posted July 22, 2019 What a completely different world we have all been thrown into, so overwhelming. I’ll be praying for strength for you and your hubby. Link to comment Share on other sites More sharing options...
hope16 Posted July 23, 2019 Share Posted July 23, 2019 On 7/22/2019 at 8:48 AM, Moonbeam said: Thank you all for responding. My husband was admitted Thursday and they are getting his pain under control so he can be discharged until our appt with his neurosurgeon. Tomorrow is a big day as everyone back to work and hoping to have team in place and somewhat of an idea of the next course of action. I have so many questions etc for them to answer and have been trying to gather as much as I can through all the sadness I’m feeling. The shock of it all hasn’t worn off yet or really gotten to a point where I can even wrap my head around it all. How this spread like this in less than 3 months has stopped me in my tracks. I’ve realized, in a mere minute, that “cancer is unpredictable “ is an understatement. It’s hard to not wonder what went wrong? What did we/they miss ? The doubting his treatment etc is not productive but wow, this cancer isn’t messing around. 😩 I’m heartbroken and so trying to stay positive and I’m ready to kick it’s *ss, but good god, this is some strong competition and I’m not even. Competitive!!! 🤪 I think I have some ideas how they should move forward However , he doesn’t have any mutations . Meaning they all in December came back as zilch! No reaction. They doing his “recent” tissue samples but took awhile for the first and I feel we have no time to wait. The clock is ticking! I’m angry. I’m sad and I simply cannot lose home. Have had far too many losses and he’s all I got! I am sailing on the same boat and understand every bit of the pain that you are going through....just pray a lot......hugs to you. Link to comment Share on other sites More sharing options...
Terri L Posted July 23, 2019 Share Posted July 23, 2019 Prayers out for you and your husband. Is his pain under control yet? Link to comment Share on other sites More sharing options...
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