Stage IV NED crew : lets support each other
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Great news Barbara!
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Way to go, Barbara! I also don't put NED on my signature for fear of jinxes. But so far no jinxes posting on this thread for me. Love the Tibetan proverb on your signature.
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Well, I may be leaving the NED crew. I had a lymph node near my liver light up and show as enlarged to 3cm on my PTscan. Have an appointment with a surgeon on Friday to discuss removal and/or biopsy. My tumor markers are still in the normal range. It is a long wait ahead to see what everything will show; so, if anyone has been through this before I'd love to hear about your experiences!
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nbnotes - gentle hugs for good news. the wait is awful
Like the rest of you - I am always afraid of jinxing as well. waiting for the other foot to fall can just suck up a lot of energy
Nel
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Yes it does suck up a lot of energy. After learning that my recent round of extra scans turned up nothing dramatic, my fatigue and low mood improved somewhat. And I had been telling myself that I was handling the scanxiety so well.
Nbnotes, with normal TMs, might they wait and re-scan? Have your TMs been reliable in the past?
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ShetlandPony - We had waited a year from the last scan for this one b/c my tumor markers had been reliable and stayed normal. My original mets were in the liver so with the proximity to that, and I finally got to see the scan report which says it lit up at a 6.9, she doesn't want to risk waiting. Anything above a 3 suv in a lymph node indicates possible cancer; so, at this point, I just want it out if at all possible as well to know for sure what we are dealing with.
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Ah, yes 6.9 sounds high. To biopsy or remove it seems sensible. I wonder if the fact that the TMs did not rise means the biology has changed? I don't know. Keep us posted. I'm glad you can see the doctor this week.
I have this liver area that has been around 3.2 for three PETs in a row, so I'm always wondering if something is brewing, and what the TM will be the next month. They have slowly risen to just above normal, but then dipped back into normal range, twice. Last one was four points above normal.
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ShetlandPony - Oh, I hope that nothing is brewing for you. I know that has to be very stressful.
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Hi NED crew,
How often do you get scanned? My doctor wants to scan 2/year now to prevent damage from radiation. Thanks
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I started out getting scans every 3 months, but after a bit went to every 6 months. My mo feels that I'm doing well and has the same radiation concerns. I'm fine with that. Should I become symptomatic, she would order a scan sooner. That seems reasonable and prudent to me.
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mon, two years seems like a very long time for someone with stage 4 cancer. Have you been NED your entire 5 years? If so, that's awesome! But I would still push for, at the very least,once a year. Honestly,for the amount of radiation you'll get for that, it's likely your cancer will become an issue before anything the radiation will do.
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That's a good way to look at it, Stefajoy -- risk of radiation vs. risk of not catching cancer activity. I read Mon's 2/yr to mean two times per year, or every six months. I get a PET/CT every 3 months. I wanted to go to every four to six months, but then those TMs started slowly rising and there was that ambiguous area on the PET. But still, I feel like since that area has been the same for three scans, I could space the scans a little more as long as the TMs don't look alarming. But I don't want to gainsay my onc. I do go to her for her expertise.
Any report, nbnotes?
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Shetland, thank you for clarifying. I did read that wrong. 2x a year sounds reasonable for NED.
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Thank you for the responses!
Indeed, I meant 2 times per year. I have been NED for 5 years, but I have it clear in my mind that the scary enemy is cancer, not the therapy...at what point can we or should we lower our shield?
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Mon, I guess the NED crew is on yellow alert.
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That's a good way to put it, ShetlandPony, NED Crew is on yellow alert. Even though I live my life as usual, I always feel like I'm on yellow alert. I started out with scans every 3 months, but now I'm at every 6 months. I was worried about changing the terms, but my MO is confident more often is no longer warranted. It is nice that appts. are lessening which gets one back to an even more normal life.
nbnotes, keep us posted with an update when you have one. Hugs to you all.
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When to lower the shield? I guess it would be different for everyone and depend on the risks of recurrence, which unfortunately can't really be calculated in precise terms. I trust my MO to make the call. So far he's graduated me from every 6 months, to once a year and now it looks like it may be 2 years for CTs. I have been NED since 2008. I'll see in the spring what he thinks. Last visit I just got x-rays and ultrasounds. He does do a lot of bloodwork every 6 months. I'm not sure if he thinks taking blood is a good thing in general or if he's really looking for something. It's probably the latter. Along with checking tumor markers and estrogen levels, he seems to be searching for signs of inflammation. For example, I am not diabetic but he watches my insulin and blood glucose. I should ask him about that, but honestly, I don't really want to know.
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Wow Heidihill.... that is amazing! My scans are every six months... sometimes we inch past that a little. I've been NED for almost four years. I can't imagine that my oncologist would every go to once a year, but I will ask at my next visit. I do get labs done each time I am there for an infusion, which is supposed to be every three weeks, but that schedule definitely slides... I go once a month, and this next time I am skipping an infusion. My oncologist has said that after the five year mark, she has some stage IV ladies that just come in "whenever they feel like it" for an infusion (Her2+ patients) but I don't think I could ever be that relaxed about it. She definitely looks at my labs closely - also looking for inflammation, blood counts (always low), kidney function, etc.
XO
Andi
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Awesome news, Heidihill, and you give me hope. Hugs to all.
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Hi ladies... coming over here to join the NED crew! I have been NED since March 28, 2016. Onc reduced me to scans twice a year. He is not big on checking my tumor markers. For the most part I have been doing well. I was diagnosed de novo in June 2015. I have two very small lesions on my liver.I am still working full time, traveling, and living life to the fullest! Hope to stay in this group for a long long time.
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Hi, mdillard! Good to "see" you again. Glad another Merland girl is on our crew!
Tina
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Hi mdillard, and welcome! I was also diagnosed in June 2015 de novo. Congrats that you are doing so well!
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Well, my ins company seems to think I am cured. They have been very good about covering everything over the last almost 7 years;whatever scans my onc ordered, drugs off label, etc. I am getting pet scans just once a year ( every November) and this year they denied it. I at first thought they made a mistake and forgot I had mets. But even after speaking to the onc's office, they denied any scans ( even a ct). They said that nothing in my record indicates routine scanning. I will be Ned 6 years in February, and stopped h & p in Jan, 2015.
I decided not to appeal and just tell the onc sometime next year I am having some pain, and seeing then if they will cover it.
It will probably be a year and a half between scans. I am trying not to freak out too much. Luckily my tm's have been reliable and I have been feeling well.
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Yeah!! Great news. I'm afraid I may be done with ned. Got markers today, they went to 74. I'm freaking out,. Have scan friday. I'm so scared!!!
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LvinAZ44, have your markers always been reliable? Sending positive energy your way and wishing you good luck on the Friday scan. I'll be thinking of you and surrounding you with virtual (((hugs))). Keep us posted.
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Barbara, my markers have been below 40 for 5 months with 2 clean scans. Last scan markers went from 20s to 39.5 but scan was clean. I'll know next Thurs. Fingers crossed. Happy holidays!!
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LvinAZ44 -- Sending positive thoughts that your scan will be good! I'm in a similar boat waiting on the results of a biopsy of a lymph node done Tuesday to see if mine is back or not.
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Grrrrrrrrrrrrrrr. Damn cancer cells.
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😮 yelling. Stupid disease!!!!!
Well it rained here in AZ so that's wonderful and a storm heading here Saturday. I miss the rain being from Ohio, doesn't rain much here.
NB, sending you good vibes.
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Lauriesh, bummer on the insurance. Sounds like a good strategy for next year. Actually I had hurt my neck and was really suffering when my onc asked for a CT but I wonder if insurance would have balked too if I had not had an issue.
nbnotes and lvin, good luck on the scans!
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