Lung Nodules - any advice welcome

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utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 7:47 am

Sorry that I haven't posted in awhile. I had a fractured right hip, so I have been dealing with that.

So most recent CT scan showed growth in (1) lung nodule (right lung lower lobe). Most recent measurement shows that nodule has grown to 6mm x 7mm. I am beyond a little frustrated. At one oncology appt. the nodule will be stable. Then at next oncology appt. 3 months later, the CT will show that nodule has grown. So, the nodule has tripled in size since CT scan from (3/2021 - nodule measured 2mm x 3mm then).

So, my oncologist wants to wait 2 months and do an additional scan before deciding upon biopsy. He says he is not convinced the growth is cancer, which I think is crap. I had expressed concern over the past year about this nodule. He kept telling me not to worry, blah blah blah. In addition, he told me that my cancer had only a 1% chance of reoccurrence, which I now believe is bs. He also said that if the nodule is cancerous, he is certain that either SBRT or VATS could treat it. I don't know whether to believe this either. My oncologist is not a surgeon and only a radiologist and/or surgeon could confirm that the nodule could be safely treated with either SBRT or VATS.

Also, he said that chemo might not be necessary. WTH???!!! I know that I should get a second opinion. However, I live in rural Utah, would have to travel far for that 2nd opinion and I am NOT a wealthy person either.

I am really panicking...can't sleep, bouts of crying. In hindsight, I now realize that I should have pushed for lung biopsy sooner and that is on me. Am I totally screwed now?
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

roadrunner
Posts: 240
Joined: Sun Jan 12, 2020 8:46 pm

Re: Lung Nodules - any advice welcome

Postby roadrunner » Thu May 12, 2022 10:06 am

As you can see from my signature, I just went through something similar. I’ll try to provide some general background, but feel free to PM me if you want to talk more.

Determination of whether a nodule like this is a met is tough because it is so small. My known (sub-pleural) met was 7mm when wedged out, the other (more central) nodule was “5mm or 6mm” when I had SBRT on it. Factors include the appearance on scans and the growth rate. Mine were also very slow, closing on max (the central one seemed to stall) for CRC mets even well off chemo. My were frequently designated “stable” as well, but keep in mind that there’s substantial inter-observer and even some infra-observer variation in size estimates on CT (also depends on contrast and machine), so when nodules are this small evaluation takes time. Most generally, pulmonary nodule growth is evaluated by calculating “doubling time,” which basically means how long it takes the diameter to increase by .26. So a 7mm met will have “doubled” at 8.82mm. If I recall correctly, the range for doubling of CRC mets is about 30-120 days, assuming no systemic therapy intervened. But none of that is definitive. As I said, at this size the possible error is large versus the nodule size. But the growth over time is concerning.

Since you don’t have everything in your signature, I couldn’t calculate anything, but I share your concern based on what you included. Wedge resection is a real surgery, but quite a light one, comparatively. I went home the same day, was 100% and back to running in a few weeks. SBRT was far less of an event. Really nothing at all in terms of immediate side effects. I will have to look at it, but I don’t think biopsy is usually done for such small nodules, and I think is generally disfavored because by the time it’s practical it’s generally unnecessary (because of radiological evidence and growth pattern).

So I can’t recall if this would be your first potential evidence of metastatic disease, but if it is, yeah, that can be scary. My team was able to tell from the images and growth rate that it was a met, so I knew that going into surgery. But things get better. If you do have an isolated pulmonary met, that is highly treatable and survivable. There are a number of posters on here many years out from that situation. Moreover, you should NOT feel guilty about not getting a biopsy earlier. I believe it would have been too small (I think it still is), and the approach for nodules this size is nearly always to watch and wait. You did nothing wrong here that I can see. You’re right about the next stage, though. A second opinion would be good (I know it’s rural Utah but many major centers will take transmitted scans and do remote consults in cases like yours). There are, however, other things to consider strategically, such as whether to do chemo down the road if it’s a met (debated, as your onc intimated), what approach to take to the nodule if intervention is called for, how long to wait, etc.

So my bottom line is: I understand the fear and stress, but you did zero wrong so far (don’t beat yourself up unnecessarily), it still may not be a met, but even if it is it’s nearly certainly very treatable. This may be a very high-leverage strategic point though (so you should get full info). Fortunately you have some time to do that.

As I mentioned, happy to chat more if you wish.
7/19: Rectal cancer: Staged as IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced size est. 70-75%)
neoadjuvant chemorad 11/19
4 rounds of FOLFOX July-August 2020
ncCR found 10/20; biopsies negative
TAE 11/20, tumor cells removed, lung nodules orig id’d 6/20 stable Nov 2020
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT for remaining nodule 1/22
CT 3/22: Clear

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 10:47 am

roadrunner -

Thank you for the kind reassuring words. Also, thank you for providing the information about your wedge resection. It is comforting to know that the lung nodule is treatable.

Yes, this growing lung nodule is my first occurrence of metastasis. I am open to trying chemo again. I had CAPEOX after my LAR surgery. The oxaliplatin caused transient blindness, so the onc stopped oxaliplatin and I continued taking capecitabine. When I pressed my onc about chemo (at the most recent appt.), he did relent and say he would consider allowing me to take capecitabine again for 3 months.

I am trying to not feel guilty. I want to make sure that I am doing everything in my power to stay on top of everything.

Quick question, I don't mean to pry. Did your lung nodules share similar characteristics (i.e. mutations) with your rectal tumor? Secondly, were you given the option of restarting chemo after your wedge resection?

Thank you again!
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

Claudine
Posts: 682
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lung Nodules - any advice welcome

Postby Claudine » Thu May 12, 2022 10:54 am

Utahgal7 I'm sorry about this potential recurrence, but like roadrunner said, isolated lung nodules are eminently treatable. In terms of chemo, my husband had quite a bit of success with Folfiri/Avastin - he had many tiny nodules in both lungs so in his case a systemic treatment was the way to go.
Keep us updated, and hopefully you can get answers and support from your treating team that provide reassurance.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 11:01 am

roadrunner -

I forgot to mention one other thing. I was thinking of getting a 2nd opinion from USC Keck Cancer Center in Los Angeles. I was going to see if I could get an appointment with Dr. Heinz Josef Lenz. My mom is a retired USC employee and knows several of the oncologists there.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 11:06 am

Claudine,

Thank you for the kind words. Your husband has been through so much. That is good that FOLFIRI/Avastin has worked well for him. I don't mean to pry. Was your husband's tumor KRAS mutant or KRAS wild? The reason that I ask is that I have read FOLFIRI works better than FOLFOX in KRAS wild tumors.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

Claudine
Posts: 682
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Lung Nodules - any advice welcome

Postby Claudine » Thu May 12, 2022 11:20 am

My husband is KRAS G12A, but oxaliplatin didn't work for him, whereas Folfiri did.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox ; Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 11:43 am

Claudine,

Sorry I missed seeing in your signature that your husband's cancer has KRAS G12A mutation.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

prayingforccr
Posts: 319
Joined: Sun Jun 28, 2020 4:44 pm

Re: Lung Nodules - any advice welcome

Postby prayingforccr » Thu May 12, 2022 12:57 pm

utahgal7 wrote:Claudine,

Sorry I missed seeing in your signature that your husband's cancer has KRAS G12A mutation.


If I had one lung nodule, I would look into cryoablation.

I have many, unfortunately, but am doing well.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months…..most showing cavitation.

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 1:21 pm

prayingforccr:

Thank for that tip. I will have to look into that.

Just curious, with regard to the supplements that you use, do you feel like the tippens protocol worked best on your lung nodules?
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

prayingforccr
Posts: 319
Joined: Sun Jun 28, 2020 4:44 pm

Re: Lung Nodules - any advice welcome

Postby prayingforccr » Thu May 12, 2022 1:50 pm

utahgal7 wrote:prayingforccr:

Thank for that tip. I will have to look into that.

Just curious, with regard to the supplements that you use, do you feel like the tippens protocol worked best on your lung nodules?


Well. I’m only as good as my next scans but there has been no growth in my nodules for six months and almost all have holes (cavitation).

I’m on day 18 of curt michael graydon’s artemisinin protocol which I wholeheartedly recommend, and will resume the fenben at its conclusion.

I have scans scheduled for june 13, and am hoping for the best.

I’m happy to answer any and all questions via DM.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months…..most showing cavitation.

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 2:00 pm

prayingforccr:

You have been through so much. I am glad that artemisinin is working well for you. Good luck with your next scan!
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

prayingforccr
Posts: 319
Joined: Sun Jun 28, 2020 4:44 pm

Re: Lung Nodules - any advice welcome

Postby prayingforccr » Thu May 12, 2022 2:15 pm

utahgal7 wrote:prayingforccr:

You have been through so much. I am glad that artemisinin is working well for you. Good luck with your next scan!


Been cycling through various protocols desperately trying to avoid sbrt/immunotherapy for as long as possible.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months…..most showing cavitation.

utahgal7
Posts: 80
Joined: Fri Sep 11, 2020 12:04 pm

Re: Lung Nodules - any advice welcome

Postby utahgal7 » Thu May 12, 2022 2:24 pm

prayingforccr -

I don't want to pry. Did you have any symptoms with your lung nodules (i.e. shortness of breath, cough, etc)?

For the past couple of weeks, I have been coughing and I have trouble breathing. I know definitely that I don't have a cold.
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.9; 0.8; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/21, 10/21, 1/22, 5/22 CT scan; (1) lung nodule (right lower lobe 6mm X 7mm)

prayingforccr
Posts: 319
Joined: Sun Jun 28, 2020 4:44 pm

Re: Lung Nodules - any advice welcome

Postby prayingforccr » Thu May 12, 2022 2:35 pm

utahgal7 wrote:prayingforccr -

I don't want to pry. Did you have any symptoms with your lung nodules (i.e. shortness of breath, cough, etc)?

For the past couple of weeks, I have been coughing and I have trouble breathing. I know definitely that I don't have a cold.


I have had no symptoms.

I swim 30 short laps a day.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months…..most showing cavitation.


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