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Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Mar 06, 2018 11:48 am

Yesterday I had the lung needle biopsy and it was quickly done, a bit of discomfort but mostly psycologic (the feeling of being stabbed or shot by an arrow).
I got as side effect a small pneumotorax and it hurts to walk in the snow. I will get the results from the biopsy next week.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

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Shana
Posts: 373
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Tue Mar 06, 2018 6:14 pm

Atoq wrote:Yesterday I had the lung needle biopsy and it was quickly done, a bit of discomfort but mostly psycologic (the feeling of being stabbed or shot by an arrow).
I got as side effect a small pneumotorax and it hurts to walk in the snow. I will get the results from the biopsy next week.

Claudia


Hoping you feel better soon and that you get the best possible results. It's so hard to wait!

Take care,

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Tue Mar 06, 2018 6:30 pm

Wow Claudia.
I am sorry about the additional discomfort. The waiting is the worst.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

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Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Mar 13, 2018 8:14 am

I am just back from the meeting with the pneumodoctor and they think the lesion is cancer from the rectum according to the core needle biopsy. So a metastasis, stage 4, their plan is to wait three months and do a new CT scan because now it is to small to remove it (1cm). I am quite astonished! No chemo, wait and see other three months? Have you ever heard of this way to proceed? :shock:
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

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susie0915
Posts: 775
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Tue Mar 13, 2018 8:58 am

Did you not have chemo scheduled after your resection? I would think even without the lung nodule you would have adjuvant therapy. I guess I don't understand if they think it is a met why not remove. My nodule is too small to biopsy or do pet scan so it is being monitored, my pulmonologist told me would have to be at least 8 mm to biopsy or for pet scan to pick up, so we monitor. Granted,I don't know all the protocols but seems if it is know to be a met would be addressed.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Caat55
Posts: 393
Joined: Sat Dec 23, 2017 6:01 pm

Re: New on the forum

Postby Caat55 » Tue Mar 13, 2018 11:28 am

Claudia,
That's crazy. go back to the oncologist and push for adjunct chemo. I know things are different there but way wait and see? I thinkmost of us here get chemo after surgery regardless of clean margins and all of that.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Mar 13, 2018 12:21 pm

susie0915 wrote:Did you not have chemo scheduled after your resection? I would think even without the lung nodule you would have adjuvant therapy. I guess I don't understand if they think it is a met why not remove. My nodule is too small to biopsy or do pet scan so it is being monitored, my pulmonologist told me would have to be at least 8 mm to biopsy or for pet scan to pick up, so we monitor. Granted,I don't know all the protocols but seems if it is know to be a met would be addressed.


No, here they do not offer adjuvant chemo for rectal cancer when you already had neoadjuvant and radio and you have clear margins. But waiting for a metastasis to grow seems weird to me. I asked to talk to a pneumosurgeon, since the doctor I talked to today could not explain what we gain with this strategy. I suspect the reason is that more metastasis might be visible in thrree months and then a surgery now would be a waste.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Tue Mar 13, 2018 12:23 pm

Caat55 wrote:Claudia,
That's crazy. go back to the oncologist and push for adjunct chemo. I know things are different there but way wait and see? I thinkmost of us here get chemo after surgery regardless of clean margins and all of that.
Susan


In three months I could do four rounds of chemo, but pushing for that? I would like at least to talk to the oncologist, but I do not have a direct number, I guess I’ll have to go through the family doctor.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

User avatar
Shana
Posts: 373
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: New on the forum

Postby Shana » Tue Mar 13, 2018 6:41 pm

Atoq wrote:
Caat55 wrote:Claudia,
That's crazy. go back to the oncologist and push for adjunct chemo. I know things are different there but way wait and see? I thinkmost of us here get chemo after surgery regardless of clean margins and all of that.
Susan


In three months I could do four rounds of chemo, but pushing for that? I would like at least to talk to the oncologist, but I do not have a direct number, I guess I’ll have to go through the family doctor.

Claudia


I'm in agreement with Susan and I know protocols are different where you are but I would think that chemo now would be beneficial. Definitely push to talk to the oncologist and be persistent. I feel your frustration! I hope you get some answers soon!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

kiwiinoz
Posts: 1091
Joined: Thu Jan 03, 2013 11:44 pm

Re: New on the forum

Postby kiwiinoz » Tue Mar 13, 2018 10:34 pm

Hi Claudia

With all the surgery are you doing any running? I have had a few months off serious running, and my long runs are now 10km which used to be my short runs. However I have 16 weeks until a Marathon I want to in so have started training again. Did a tempo run yesterday and really enjoyed it so let's see.

Now the serious stuff. You have had Neoadjuvant and radio right, then your concern is why wait for this to grow and then remove once it is big enough. If you look at it the other way, it is not likely to spread more, it is contained, and chemo will not be an answer. In fact chemo now would mean your cancer could become immune to the treatment if you need it in the future.
In my situation I had my primary rectal cancer, and lung lesion at the same time so I was given the choice by my oncologist as to if I wanted chemo or not and I had done a fair amount of reading and the school was out in that there is no proof that chemo after a lung resection provides any benefit, but at the same time there was no proof that it doesn't provide benefit so I took it.

I'd wait until lesion was big enough to get VATS, then, if you wanted it, try to have chemo after that.

One bit of news is that I found it made no difference to my lung capacity after I had my lesion removed.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 March 2017
Port Out 26 March 2015

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Mar 14, 2018 7:01 am

Shana wrote:I'm in agreement with Susan and I know protocols are different where you are but I would think that chemo now would be beneficial. Definitely push to talk to the oncologist and be persistent. I feel your frustration! I hope you get some answers soon!

Shana


Thanks Shana, I will ask for a meeting with the oncologist! :D

Atoq
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Mar 14, 2018 7:14 am

kiwiinoz wrote:Hi Claudia

With all the surgery are you doing any running? I have had a few months off serious running, and my long runs are now 10km which used to be my short runs. However I have 16 weeks until a Marathon I want to in so have started training again. Did a tempo run yesterday and really enjoyed it so let's see.


Thanks Kiwi,
I am thinking to start running this weekend, but I went skiing last Sunday and I have been dancing and training strenght all the time. Since I had two open surgeries in two months, I decided to follow the advice of the surgeon and start running after 8 weeks...I am really looking forward to it! :D

kiwiinoz wrote:Now the serious stuff. You have had Neoadjuvant and radio right, then your concern is why wait for this to grow and then remove once it is big enough. If you look at it the other way, it is not likely to spread more, it is contained, and chemo will not be an answer. In fact chemo now would mean your cancer could become immune to the treatment if you need it in the future.


But is it contained? A metastasis cannot spread further through the blood wessels? And what about the microscopic metastases that might be still around? That's what I am going to ask when I am at the meeting with the pneumosurgeon :wink:

kiwiinoz wrote:In my situation I had my primary rectal cancer, and lung lesion at the same time so I was given the choice by my oncologist as to if I wanted chemo or not and I had done a fair amount of reading and the school was out in that there is no proof that chemo after a lung resection provides any benefit, but at the same time there was no proof that it doesn't provide benefit so I took it.

I'd wait until lesion was big enough to get VATS, then, if you wanted it, try to have chemo after that.

One bit of news is that I found it made no difference to my lung capacity after I had my lesion removed.

Kiwi


I also had them at the same time, so this metastasis has been already observed for 5 months. But is 1 cm in diameter really too small for VATS?

I found in the guidelines for treatment of metastases from colon rectal cancer in Norway:

Time of lung section

1-, 3- and 5-year survival after resection of pulmonary metastasis (from several types of primary tumors) of 91%, 76% and 76%, respectively, is reported. The group that was rapidly operated after detection of pulmonary metastases had poorer survival than the group operated after a 3 month observation period. Such postponement reveals some patients with unrecognized disseminated disease.


So, ok, lets' wait three months but this will mean an observation period of 8 months, I just wonder if the pneumosurgeon is aware of that, since I have the impression that oncologist, gastrosurgeon and pneumosurgeon never meet to discuss my case :| .

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

User avatar
susie0915
Posts: 775
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: New on the forum

Postby susie0915 » Wed Mar 14, 2018 8:52 am

I had a good response to neoadjuvant therapy, only scar tissue remained. Pet scan before surgery showed no evidence of disease. However, after surgery the pathology report did show minimal residual cancer cells. Even though my margins were clear and no 0/24 lymph nodes, my oncologist recommended chemo as she could not guarantee no cancer cells got into the blood stream. Also, since you were diagnosed hasn't that lung nodule already increased in size (8mm at diagnosis and now 1 cm)?
Not sure if doctors are wanting to wait because you have already had 2 surgeries in last few months, I guess I just don't understand why they wouldn't want to take it out. Like I said, I am not a doctor but I do understand your concern. I hope you can get clarification during your next appointment.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Mar 14, 2018 10:14 am

susie0915 wrote:I had a good response to neoadjuvant therapy, only scar tissue remained. Pet scan before surgery showed no evidence of disease. However, after surgery the pathology report did show minimal residual cancer cells. Even though my margins were clear and no 0/24 lymph nodes, my oncologist recommended chemo as she could not guarantee no cancer cells got into the blood stream. Also, since you were diagnosed hasn't that lung nodule already increased in size (8mm at diagnosis and now 1 cm)?
Not sure if doctors are wanting to wait because you have already had 2 surgeries in last few months, I guess I just don't understand why they wouldn't want to take it out. Like I said, I am not a doctor but I do understand your concern. I hope you can get clarification during your next appointment.

I know but in US the protocol is different, and yes from 0.8 to 1 cm is a doubling in size, but I don’t know if this difference can be estimated so precisely by a CAT scan where you breath and are asked to hold your breath.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled

User avatar
Atoq
Posts: 232
Joined: Wed Oct 25, 2017 9:31 am

Re: New on the forum

Postby Atoq » Wed Mar 14, 2018 4:50 pm

There is a lot of literature about time of resection of lung metastases from colorectal cancer. There is a study modelling the time it takes for the last possible metastasis to show up on a CAT scan based on the time of volume doubling of the largest and therefore first metastasis. But if this is the reason to wait it would be nice to hear it from the medical team. It looks like this type of metastases do not spread to other sites but can only grow.

Claudia
45 year old, mother of 2
Dx rectal cancer October 2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 VATS surgery scheduled


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