Finally....some really great news!!!

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Maggie Nell
Posts: 842
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Finally....some really great news!!!

Postby Maggie Nell » Mon Sep 24, 2018 10:30 am

mpbser wrote:OMG. I just read my husband's CT reports from late May. I didn't go to this appointment with him and he returned very optimistic, saying that all was clear. But apparently NOT! Finding: There are scattered nodules measuring up to 4 mm including in the RIGHT lung on image 59, and LEFT lung on image 44 and 46. I realize that they may be benign but these are NEW. Why didn't the doctor talk to my husband about these???? I'm shocked and crying. I don't know what to do. I don't know whether to say anything to him because he believes he has "beat this." He might not have.



I am sorry mpbser, but I have to point out this out. As you did not attend the appointment with your husband, why do
you assume that the doctor had not discussed those CT findings with your husband?
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Mon Sep 24, 2018 10:42 am

Because he said all was clear and appeared very positive and optimistic. I assume he did not lie to me. But yeah, he could have spoken about it and deserves an OSCAR.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

cbsmith
Posts: 72
Joined: Sat Nov 28, 2015 11:45 am
Location: New Brunswick, Canada

Re: Finally....some really great news!!!

Postby cbsmith » Mon Sep 24, 2018 10:53 am

Sounds like it is time to get a doctors appointment and get the chest CT scheduled ASAP.
06/14-DX with FAP as 36yo Male
07/14-total colectomy, rectum removal, permanent ileostomy
08/14-DX Stage IIIC colon cancer KRAS mutant, MSS
09/14-12 rounds of FOLFOX
04/15-ended FOLFOX
07/15-CT showed one para-aortic lymph node, onc thought inflammation and said wait 3 mths
10/15-DX Stage IV, CT showed lymph node tripled in size and 1 small lung met
11/15-FOLFIRI + Avastin
06/16-lymph node is stable, now have a 2nd lung met
01/16-lymph node is stable, lung mets grown 2mm. Still on FOLFIRI + Avastin

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Mon Sep 24, 2018 10:56 am

Yes, I just reached out by fax explaining the situation to his local oncologist. I am beside myself with sadness.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Mon Sep 24, 2018 11:05 am

cbsmith wrote:Sounds like it is time to get a doctors appointment and get the chest CT scheduled ASAP.


Or maybe an MRI for more detail.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Mon Sep 24, 2018 11:14 am

I was wondering about that. All his MRIs have been "abdominal." I don't want to assume MRI of chest is appropriate. I'm not thinking very clearly at the moment.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Mon Sep 24, 2018 12:00 pm

Here'a a thought/question. Could these be benign nodules that simply were never picked up by the CTs and the PET that he had locally? This was his first CT at Mass General and they have the more powerful, more advanced equipment.

I looked again at the MRI from Mass General he had after the local, less powerful MRI picked up the liver spot in fall 2017. The MRI was of the "upper abdomen" and does not mention lungs at all. However, there is a note re: Lymph nodes: Borderline portacaval lymph node measuring 1 cm in short axis. Nonspecific subcentimeter cardiophrenic lymph nodes. These lymph nodes very well could be malignant. Just read about this at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787306/ They could have delivered the mets to the lungs. OR they all COULD be benign, for all I know.

I overlooked these things because I was so overwhelmed at the time just learning about the colon, then later about the liver. Now this.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Mon Sep 24, 2018 8:34 pm

mpbser wrote:Here'a a thought/question. Could these be benign nodules that simply were never picked up by the CTs and the PET that he had locally? This was his first CT at Mass General and they have the more powerful, more advanced equipment.

I looked again at the MRI from Mass General he had after the local, less powerful MRI picked up the liver spot in fall 2017. The MRI was of the "upper abdomen" and does not mention lungs at all. However, there is a note re: Lymph nodes: Borderline portacaval lymph node measuring 1 cm in short axis. Nonspecific subcentimeter cardiophrenic lymph nodes. These lymph nodes very well could be malignant. Just read about this at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3787306/ They could have delivered the mets to the lungs. OR they all COULD be benign, for all I know.

I overlooked these things because I was so overwhelmed at the time just learning about the colon, then later about the liver. Now this.


There's another thread where things were caught on the MRI that weren't caught with the CT. The CTs cost less and they are easier to do. My surgeon always required MRIs before she did her work but my oncologist always goes with CT scans. I hope that you can get things straightened out with his oncologist.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Sep 25, 2018 6:35 am

I read a ton about lung nodules yesterday, mostly on this forum. In fact, it took my entire day away from me. I'm not nearly as panicked as I was when I made the discovery but not breathing totally easy yet. So, these are the main points I learned from reading all the experiences of others who have dealt with newly detected nodules:

1) If the radiologist had any suspicion about the malignancy of the nodules, it would have been expressly worded in the report. We know they err on the side of caution with including such possibilities, e.g. "suspicious for metastatic cancer," so the neutral wording in my husband's report is a good sign.
2) Lung nodules are found on about 50% of thoracic scans, and about 90% of those found are harmless.
3) What the radiologist detects as "lung nodules" can be fibrosis/scarring or inflammation and can be caused by infections such as pneumonia or bronchitis. I would assume that congestive heart failure, which my husband had last winter into the spring, could be a cause as well. Chemo can also cause them - benign in addition to cancerous - as a result of inflammation.
4) Under .4 cm is too small for a PET to detect. Also too small to biopsy. Nodules must be at least .8 cm to be on a PET or be biopsied.

RADIOLOGY NOTES WITH FOCUS ON LUNGS

April 12, 2017 CT abdomen with IV contrast at SVMC (local hospital cancer center with not the most up-to-date technology)

Lung bases: Clear. There is note of a small amount of pericardial fluid. Free air: None. Free fluid: Small amount of free fluid seen in the cul-de-sac.

June 17, 2017 PET/CT skull-mid-thigh non-contrast followed by contrast at SVMC
Thorax: No evidence of hypermetabolic lesion in the mediastinum, hila or lungs.

July 30, 2017 MRI abdomen non-contrast followed by contrast at SVMC

NB: HX- to evaluate rest of liver. The lung bases are clear.

October 3, 2017 MRI upper abdomen non-contrast followed by contrast at MGH (most advanced/powerful technology)

LYMPH NODES: Borderline portacaval lymph node measuring 1 cm in short axis (1701:25). Nonspecific subcentimeter cardiophrenic lymph nodes. “LUNGS” not listed.

May 23, 2018 CT with contrast at MGH

Lungs and Airways: The central airways are patent. There is mild diffuse bronchial wall thickening keeping with bronchitis. There are scattered nodules measuring up to 4 mm including in the RIGHT lung on image 59, and LEFT lung on image 44 and 46.

No indication whether the nodules are solid, part-solid, or ground-glass which would direct follow up recommendation.

https://radiology-universe.org/2017_Fle ... endations/
Last edited by mpbser on Tue Sep 25, 2018 6:46 am, edited 3 times in total.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Tue Sep 25, 2018 6:39 am

mpbser wrote:I read a ton about lung nodules yesterday, mostly on this forum. In fact, it took my entire day away from me. I'm not nearly as panicked as I was when I made the discovery but not breathing easy yet. So, these are the main points I learned from reading all the experiences of others who have dealt with newly detected nodules:

1) If the radiologist had any suspicion about the malignancy of the nodules, it would have been expressly worded in the report. We know they err on the side of caution with including such possibilities, so the neutral wording in my husband's report is a good sign.
2) Lung nodules are found on about 50% of thoracic scans, and about 90% of those found are harmless.
3) What the radiologist detects as "lung nodules" can be fibrosis/scarring or inflammation and can be caused by infections such as pneumonia or bronchitis. I would assume that congestive heart failure, which my husband had last winter into the spring, could be a cause as well.
4)


My former manager's wife was going to get a biopsy a year ago for one of these things and then he remembered that she had had a lung infection within the past year and mentioned it to the doctor and he suggested waiting instead of getting the biopsy. They scanned it later on and determined that it was nothing to worry about. It saved her a minor surgical procedure. So it very well could be nothing.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Sep 25, 2018 6:45 am

Yeah, I edited my comment above to reflect that .4mm is still too small to biopsy. They are definitely something to keep an eye on, but not to freak out about like I was yesterday. My husband's mother implied that she didn't want me to even talk to him about this because his attitude has been so positive. I can't do that but I am definitely going to wait until the right time.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Sep 25, 2018 6:49 am

And, oh, yeah, MIL almost tried to blame me for not being there at this last (May scan/results) appointment. I only had a hearing in federal court that day! Damn Catholic guilt thing is not going to work on me, MIL!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

NHMike
Posts: 1788
Joined: Fri Jul 21, 2017 3:43 am

Re: Finally....some really great news!!!

Postby NHMike » Tue Sep 25, 2018 7:11 am

mpbser wrote:And, oh, yeah, MIL almost tried to blame me for not being there at this last (May scan/results) appointment. I only had a hearing in federal court that day! Damn Catholic guilt thing is not going to work on me, MIL!


I think that everyone here has had a freak out moment at Stage 3 or 4. Mine was the rising CEA thing. There are so many things that come along in this process.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Sep 25, 2018 7:30 am

And to follow up on maggie nell's question. I revise my answer. Now I am not at all certain about whether or not this was discussed at the onc doc appointment. Now I know that these could be nothing at all to worry about and that was what the doc conveyed. IDK.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

mpbser
Posts: 478
Joined: Wed Apr 19, 2017 11:52 am

Re: Finally....some really great news!!!

Postby mpbser » Tue Sep 25, 2018 8:04 am

I just heard from the oncologist's assistant who informed me that an order had been put in for an MRI AND Chest CT. This is news to me. When I spoke with the scheduler to schedule the November MRI, I had no idea. Only an MRI has been scheduled. This is soooo frustrating!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED


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