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I don't think these results from pet scan is good


Claudia

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Hi Everyone!

Just got these results from my PET Scan yesterday. I have an appt with my oncologist on Thursday but in the meantime this looks bad to me. Does it look bad to you? I know you are not doctors, Just looking for opinions. Thanks in advance.

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TMJ,

I think it's bad because the nodule in my lung has grown somewhat but the standard uptake value (SUV) has gone from 1.3 to 6.3. The impression sections says it's conserning for local recurrence (not sure what that means). How can I have a recurrence if it never went away? I really really really want to be wrong. 

 

 

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56 minutes ago, Claudia said:

TMJ,

I think it's bad because the nodule in my lung has grown somewhat but the standard uptake value (SUV) has gone from 1.3 to 6.3. The impression sections says it's conserning for local recurrence (not sure what that means). How can I have a recurrence if it never went away? I really really really want to be wrong. 

 

 

Seems to me the radiologist that read your report is using terminology of a patient that would have already been diagnosed.  local recurrence means something was there-it was removed or treated-and that it has returned.  The report should list your clinical history at the top.  It should also list comparison of prior studies.

I take it you haven't been diagnosed with cancer in the past?  

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Hi D iane,

I was diagnosed a year ago today with stage 4 Squamous Cell nsclc a year ago today. I had two good pet scans and now this one. I only included the results of the test and not the previous information.

 

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27 minutes ago, Curt said:

Hi Claudia.  The increased size and high SUV uptake is concerning.  How long have you been monitoring the nodule?   

Hi Curt,

My last two pets were very good. I was diagnosed a year ago today. This nodule is the same one I have always had in my lung. I had a met to a lymph node in my hip that was gone after chemo that has never come back. I have been on Keytruda only since May. Had one good scan 4 months in and now this.

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Hi Claudia,

If there is one thing I learned over the last year it’s wait for the oncologist to weigh in. I had two scans last year where the oncologist disagreed with the radiologist’s interpretation.  It’s really hard to make a call if this is disease progression, SUV scores can be imprecise.  
 

The key thing to remember is that it’s not what if but what’s next.  Let us know how the appointment goes.  
Michelle

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Claudia I agree with  Michelle.  I had a very low SUV on a nodule which would have led one to believe it was benign but it turned out to be malignant.  I don’t think recurrence was the right term to use.  I’m use to seeing things like metabolically more active when describing this.  The key will be to find ways to convince the tumor to be  metabolically less active.  I’m sure your onc will already have had a plan in mind.  Hang in there.  
 

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Claudia,

Just considering the upper lobe speculated nodule SUV uptake from 1.3 to 6.3 would lead me to conclude the nodule has metastatic properties. I believe the statement consistent for local recurrence implies the nodule SUV was at 1.3 on a previous scan and is now 6.3. While the SUV was low on the previous scan, the nodule itself did not disappear so perhaps that is why the term local recurrence is used.

PET results are difficult to understand. SUV uptakes are not precisely or directly measured but rather the radiologist compares the "brightness of the scan" to a reference standard. So there is a margin of error. Nevertheless, a SUV above 4 is generally thought to be indicative of metastatic activity.  Here is a blog I posted a while back that explains PET scans and variability. 

I do agree with others who suggest you rely on your doctor's insight and knowledge. Your doctor ought to have records of all your tests and should use them all to arrive at a conclusion about this nodule.

Stay the course.

Tom

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You guys are awesome. I was so scared and freaking out. Thank you so much Curt, Michelle and Tom for helping me to understand things and to calm down some. I hope you are right and will let you know how this turns out on Thursday. I have total faith in my Oncologist and plan to do whatever he tells me to. I can't thank you enough. Much love and respect.

Claudia

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Claudia,

I'll join Curt in the fact that my SUV was low and my nodule did turn out to be cancerous.  So, there really does seem to be a margin of error to deal with.  Deep breath, talk to your doctor and don't try to diagnose.  I've read CT Scans that made it sound like I shouldn't be able to breathe and yet I do 5 miles/day six days a week.  The doctor will be the final interpreter and then you'll better understand what, if anything, needs to be done.  BTW, I no longer try and read my own test results...they made me too crazy.

Lou

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Hi Everyone.

My Oncologist called yesterday and told me that the next step for me will be radiation. He said we will "zap" the nodule for 5 sessions everyday. He didn't seem upset about the results of the pet and told me to calm down and have a glass of wine (i had a couple of glasses). I will meet with him on Thursday for my usual Keytruda treatment that he feels is keeping the LC from spreading to other parts of my body. He will set me up with the radiation Dr when I see him on Thursday. I feel better now that there is a plan but a little nervous as to what to expect. I asked if there will be side effects and he said yes. You will get a sunburn. I can handle that. I appreciate any input on this type of therapy. Thanks in advance. Much love and respect.

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Claudia,

It always feels better to have a plan of action with this darned disease.  The fact that your oncologist is so confident in the next stage of treatment should make you a bit more calm (although, if I drank I'd have the two wines anyway) as you go into your next phase.  Looking forward to hearing good outcome from these next treatments.

Lou

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Thank you for your kind words of encouragement Lou T. I hope you are doing well in your battle. I will have more info on Thursday and will post it here. Thanks again. Much love and respect.

Claudia

 

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Hi Claudia, 

I'm so glad you got the phone call.  Zap away those little buggers.  One of our group members in KC had a similar issue on targeted therapy, received five doses and was fine to continue treatment.   I'm sure there are others here that can provide some tips on how to manage the sunburn.  For now, carry on.  You can do this and we're here to help carry the ball.  

Michelle 

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Thank you Michelle for your response. I was happy to receive that phone call too. I don't know what I would do without y'all. Much love and respect.

Claudia

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Hi Claudia.  So glad to hear calm in your voice!  Surely the wine helped too!

I had 30 radiation treatments for breast cancer in 2018.  Although not the same type of treatment, (it sounds like you maybe doing the accelerated hypofractionated radiation?), just wanted to pass along my experience.   There is a planning session first where they have you in the CT machine taking pictures, they may mark the spot(s) on you with tiny tattoo's or marker,  then it goes out to a physicist for the machine mapping/planning.  Once the plan comes back they do a simulation, and if all looks good they give you your treatment and or schedule your sessions.    The treatments are fast and easy.  As I understand it as the radiation is killing cancer cells  it is also killing your skin cells (over time). I didn't notice anything at first, but by end of week 2, my skin was beginning to break down.  This is when your skin looks to be burning when actually it is skin cells dying and new ones starting to replace the dead ones.  What helped me is I went braless, I bought cheap 100% cotton pull overs--nothing but cotton against the skin I think helped with further irritation.  I also slathered on Aquaphor 2x's a day.  It's a messy ointment but will promote healing.  I would definitely ask if this is a recommendation for you.  You may also need it on your back as well as your chest.

Not sure this is of any help to you as I had the external beam type treatment.  I will be interested in how this treatment goes for you.   Good luck and get zapping that nodule to hell!!!!

 

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Claudia,

Zap that sucker! I do love stereotactic body radiation therapy (SBRT). When sitting for your 5 short session, amuse yourself by imagining the millions of cancer cells screaming in agony as they zapped!

Stay the course.

Tom

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Claudia,

I had 15 radiation treatments last year. They targeted my sacrum, rib and hip to relieve pain I was having and I had no side effects from the treatments. Then last month I had SBRT on my lung and the only side effect I have had so far is mild fatigue. That's not to say I won't have more as time goes by, but so far I am very pleased. The first of my 3 treatments was the same day as my chemo and the only side effects i had were what I normally have after chemo.

Good luck with your treatments and please keep us posted.

 

Rose

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Thank you D Lane, Rose and Tom for telling me your experiences with radiation therapy. I hope it's as easy as it sounds. I do have a question that may seem stupid but I'm gonna ask it anyway. Does the radiation explode the tumor? It worries me that I will have pieces of tumor going through my body and that it will make it spread. Is that the way it works? Much love and respect.

Claudia

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