Freaking out of my mind...CEA climb and specks on lungs

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Punky44
Posts: 379
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Thu Oct 24, 2019 9:29 pm

ams5796 wrote:I do this all the time. In fact, I just came home from a three month lung scan. The spots he saw three months ago were not there today. Yay! I was diagnosed with rectal cancer almost thirteen years ago and have had recurrences in my lungs three times. Twice I had VATS and once I had SBRT. My lungs aren't in great shape now, but for the most part I feel great. I have lots of scarring in my lungs from the recurrences and a MAC infection that they thought was a huge amount of mets. (long story, luckily it was an infection :shock: ) Lung mets usually grow slowly so I don't think waiting three months will be a problem at all. I also think in many instances there are ways to get rid of these mets depending on how many and where they are located. You asked in the above post what the odds are that it is an infection vs. mets. I think it is usually an inflammation or an infection. There is absolutely no reason to be upset now. Chances are it will be fine :) We think that what he saw in my lungs on the last scan (three months ago) was inflammation from a bad flu/cold that I had in March. It can take that long for the inflammation to clear up.


Wow thank you so much for this comment and so happy for you that you keep kicking cancer’s butt with these recurrences! So lung Mets are typically slow growing? She’s always had a 5mm spot that remained totally unchanged even through chemo when her tumor and lymph nodes were shrinking and now all of a sudden there’s a 13x9mm “density” in that area and they are telling us it’s either that spot grew or an “infectious infiltrate superimposed” over that spot. Praying it’s the latter.

With how long it took for your infection to clear up, do you think I’m wrong to have a PET in a month? I guess I’m hoping it’ll give us more info one way or another. If it lights up, do you think they’ll just say come back in X months and we will try again?
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

ams5796
Posts: 2297
Joined: Fri Feb 06, 2009 10:07 am

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby ams5796 » Fri Oct 25, 2019 7:47 pm

Everyone's tolerance for this journey is different. When they first started seeing nodules on my lungs and I was told that we were going to "wait and watch" I hated that idea. I wanted to know right away and treat it right away. I found out over the years that lung mets are slow growing and there is time to wait. If it were me I would wait for the three month scan. I don't think you'll get any good information from the PetScan at this time. As I mentioned if it is cancer there are so many ways to get rid of lung mets. It's all about how many there are and where they are located. I know it's hard, but I would try not to think about too much until the three month scan. You may be worrying for no reason. It very often turns out that way.

Good luck. I can answer any other questions you have.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

bitchslapped
Posts: 1524
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby bitchslapped » Sat Oct 26, 2019 4:19 pm

Punky,

You know how I feel about inserting oneself as the patient vs your mother & then sharing those stresses w/the patient that a caregiver should carry on their own back (for the most part). Remember our little talk here:
viewtopic.php?f=1&t=61055&p=483618#p483618

Her doctor is your guidance unless you get a 2nd opinion (pulmonologist?).

Just keep in mind that if she is on Medicare, they don't give those PET/CTs away. There may be a lifetime limit. Check her Medicare booklet & make those PET scans count.

Remember the cancer journey is hurry up & wait. It's rough @ best, I know.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Punky44
Posts: 379
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Fri Nov 01, 2019 6:38 pm

ams5796 wrote:Everyone's tolerance for this journey is different. When they first started seeing nodules on my lungs and I was told that we were going to "wait and watch" I hated that idea. I wanted to know right away and treat it right away. I found out over the years that lung mets are slow growing and there is time to wait. If it were me I would wait for the three month scan. I don't think you'll get any good information from the PetScan at this time. As I mentioned if it is cancer there are so many ways to get rid of lung mets. It's all about how many there are and where they are located. I know it's hard, but I would try not to think about too much until the three month scan. You may be worrying for no reason. It very often turns out that way.

Good luck. I can answer any other questions you have.


Sorry for the delay in replying—thanks so much for your input—right now our PET is scheduled for end of November but we are going to try to connect with the original oncologist we saw back in April to see what her thoughts are...I know we may very well not learn anything new if the infection is still there and “lights up” but I’m wondering if maybe we could get any new info one way or another—if the spots were smaller, wouldn’t that lean toward infection? Or if they were bigger, lean toward aggressive spread? I know you said they are slow growing but since this is the first time we’ve ever seen anything like this, watch and wait for 3 months is really giving both me and my mom a huge amount of anxiety. I guess we are thinking we’d rather be overly cautious just because it’s our first go-around with “lung thingys.”

I will keep you posted—please keep us in your thoughts.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Punky44
Posts: 379
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Fri Nov 01, 2019 6:41 pm

bitchslapped wrote:Punky,

You know how I feel about inserting oneself as the patient vs your mother & then sharing those stresses w/the patient that a caregiver should carry on their own back (for the most part). Remember our little talk here:
https://coloncancersupport.colonclub.co ... 18#p483618

Her doctor is your guidance unless you get a 2nd opinion (pulmonologist?).

Just keep in mind that if she is on Medicare, they don't give those PET/CTs away. There may be a lifetime limit. Check her Medicare booklet & make those PET scans count.

Remember the cancer journey is hurry up & wait. It's rough @ best, I know.

Best Wishes
BS


Sorry for the delay in replying! I remember that time all too well! Ugh. Right now we are both just really worried to wait 3 months since it’s all new to us and since they agreed to a PET, we went with it. I know it may just be ambiguous but I guess I’m hoping it somehow yields new info one way or another and will let us get a 2 month head start on anything that could be bad.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

MetastaticEquilibria
Posts: 58
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby MetastaticEquilibria » Sat Nov 02, 2019 5:44 pm

Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) and solid, and grow slowly. At least in my case, and noting with reservation that even the experts have said they can’t rule out anything for your mother yet. But I would go with their gut feelings for now. In my experience radiologists are not deceitful.
Last edited by MetastaticEquilibria on Sat Nov 02, 2019 5:59 pm, edited 1 time in total.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 last 2: 130 74
CA19-9 2.8-232 last 2: 232 96
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

MetastaticEquilibria
Posts: 58
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby MetastaticEquilibria » Sat Nov 02, 2019 5:57 pm

bitchslapped wrote:Just keep in mind that if she is on Medicare, they don't give those PET/CTs away. There may be a lifetime limit. Check her Medicare booklet & make those PET scans count.


A lifetime limit on PET/CTs? That’s insane!

Is that a limit on PETs, PET-CTs, and/or CTs? Or just a limit on PET-CTs? Either way, how is that medically justifiable?

So glad I don’t live under that insurance system.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 last 2: 130 74
CA19-9 2.8-232 last 2: 232 96
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Punky44
Posts: 379
Joined: Mon Oct 01, 2018 4:29 pm

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby Punky44 » Sun Nov 03, 2019 6:56 pm

MetastaticEquilibria wrote:Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) and solid, and grow slowly. At least in my case, and noting with reservation that even the experts have said they can’t rule out anything for your mother yet. But I would go with their gut feelings for now. In my experience radiologists are not deceitful.


No :( just the text of the findings.

This “spot” was unchanged for a year since diagnosis (5mm) then all of a sudden is 9x13mm in that same area.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1; 7/24: 1.9; 10/22: 2.6
6/28/19 Reversal and port out
10/22 — nodules on lungs—possible infection or mets—PET scheduled for 11/25

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

MetastaticEquilibria
Posts: 58
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Freaking out of my mind...CEA climb and specks on lungs

Postby MetastaticEquilibria » Sun Nov 03, 2019 9:57 pm

Punky44 wrote:
MetastaticEquilibria wrote:Do you have access to the raw imaging data? And past raw images? I have noticed that lung spots that turned out to be believed to be infections start out large (~1 cm or more ) and cloudy looking. They don't shrink, but sometimes fade away. Lung mets, on the other hand, start out small (a few mm) and solid, and grow slowly. At least in my case, and noting with reservation that even the experts have said they can’t rule out anything for your mother yet. But I would go with their gut feelings for now. In my experience radiologists are not deceitful.


No :( just the text of the findings.

This “spot” was unchanged for a year since diagnosis (5mm) then all of a sudden is 9x13mm in that same area.


Oh, that is even better, they have measured the size for you. Mine typically just say “grew/shrank/unchanged,” leaving me to make the measurements myself, at least for small ones. Partly I think because measurement errors are surprisingly large in that regime.

Anyway, the machine operators are the ones who know best the characteristicts of their machine. That’s what they do all day. If they say it is not time to panic yet, I’d take their word for it. There will be plenty of time to panic later if needed, and doing so before it is needed is unproductive.
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 last 2: 130 74
CA19-9 2.8-232 last 2: 232 96
RAS wild MSS MET+ TP53-
UGT1A1*28 homo


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