Starting point

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MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Starting point

Postby MadMed » Sun May 02, 2021 10:45 pm

Hi,
I’m 52 year old man, had some bleeding recently and since my physical was coming up, I mentioned it to my GP.
Quickly from there went to get a flex sigmoidoscopy with biopsy. The a CT.

Mass is 30mm biopsy came back with Invasive ADENOCARCINOMA, poorly differentiated with signet ring cell features.
CT :
Low attenuating lesion with surrounding wall enhancement seen along the lower rectum extending to
the edge of the rectoanal junction along the anterior right wall with slight fat stranding and edema along the fat plane separation with the
overlying prostate, series 10 image 36 series 6 image 563 series 11 image 37 No definitive prostate invasion. No evidence of obturator or
inguinal adenopathy.

This was 4/28/2021. I have oncologist appt Monday morning, and am trying to get a surgeon lined up for what follows.
This started fast and is moving faster. I feel shooting pain in my armpit, groin area. Feels like it’s going really fast.

I have no idea what stage or designation this is, I imagine it will be determine from MRIs and the surgery. The main thing on my mind is that I need the surgery immediately to stop or at least remove the source. Having read non-stop on this type of cancer, some studies recommended a round of RT to try to shrink it before surgery. I am not sure I have the luxury of time.

Anyway, thanks for setting this board and all that share their most private experiences with this disease. I saw Becky-Hs post, you are my hero :D

Good luck to us all.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Starting point

Postby Gravelyguy » Mon May 03, 2021 11:51 am

Welcome but sorry you have to be here.

Every case is different but for us rectal cancer folks almost always there is chemo or chemo/radiation first before surgery. When it comes to rectal cancer surgery, experience is what you want to look for. It is pretty tight quarters in their and an experienced rectal surgeon with a good track record is who I would be looking for.

Hang in there!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Starting point

Postby MadMed » Mon May 03, 2021 5:04 pm

Thank you Dave! I saw your reply at the perfect time and it was super helpful.
I had my first meeting with the oncologist and she was adamant that surgery won't be for another 6months.
Apparently the standard of care is chemo -> chemo+RT->Surgery. I was completely confused, why are we keeping this thing in me, i want it gone as fast as possible.
As I was leaving her office, i saw your reply and felt better about what the plan is. I guess this is what seems to work. I am still concerned that chemo won't slow this down, the signet ring cancer does not necessarily react the same way. The onco agreed that we will have a scan during chemo to check that things didn't go sideways or worse. The onco explained to me that the goal is to also shrink the cancer and potentially make the surgery more manageable. That all sounds good when it works.

The one bit of good news, that your message touched on is that I seem to have successfully locked in one of the top rectal cancer surgeons in MA. He will see me next Tuesday.

Thank you for sharing, it looks like there's a plan coming together. I'll take this on as best as possible. Now, i gotta go figure out how to make that cool signature you'all have. It is such a great idea.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Starting point

Postby Green Tea » Tue May 04, 2021 1:22 am

IsmailMehdi wrote:...Now, i gotta go figure out how to make that cool signature you'all have. It is such a great idea.

A link to the signature creation page is here. (NOTE: Signatures are limited to 512 characters including spaces.)

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

The kinds of things that you might want to put in your signature are listed in this post:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

You might also want to look at this post, which gives some perspectives on Rectal Cancer diagnosis and treatment options:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65286&p=507636#p507636

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Starting point

Postby catstaff » Tue May 04, 2021 7:53 am

Total neoadjuvant treatment is the standard in most centers for rectal cancer now. Often it's in the reverse order (CRT then chemo). However, the signet-ring cell feature is uncommon and particularly so for rectal, so you are sensible to want some evidence the chemo is working. My DH just had an aggressive Grade 3 tumor, no signet-ring cell or mucinous features, but folfox failed completely; the tumor had been knocked down by the radiation but actually regrew some under folfox. Then he had a local recurrence. We are left wondering whether he might have had a better outcome if they'd skipped or shortened the chemo.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Starting point

Postby MadMed » Tue May 04, 2021 8:12 am

Thank you for the reply catstaff, hoping you DH can find an alternate treatment. My understanding was that the chemo would not necessarily shrink the tumor but rather stop the spreading.
I'm starting to understand that there are many tools, different chemo, immunotherapy. The one thing I understand is that you need to be as aggressive as this cancer wants to be.

You are 100% correct, so Total Neoadjuvant Therapy (TNT) is the new standard of care for RC. As you said, it is not necessarily true that SRC or any RC cells respond to it, but it seems to be overall preferable.
I found out late last night, before going to bed that I am not a candidate for Keytruda, my Immunohistochemistry came back:
No loss of nuclear expression of MMR proteins: low probability of microsatellite instability-high (MSI-H)

Meaning i am MSS pMRR. So there's an option out. Today is going to be interesting, i have the MRI at noon, should get an idea of staging an all that coding that i'll have to decipher.
Ill follow the TNT regimen and then get a scan to see what's going on. That'll be a clue for next steps.
Last edited by MadMed on Thu May 06, 2021 1:48 pm, edited 1 time in total.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Starting point

Postby MadMed » Tue May 04, 2021 8:18 am

Green Tea wrote:A link to the signature creation page is here. (NOTE: Signatures are limited to 512 characters including spaces.)

http://coloncancersupport.colonclub.com/ucp.php?i=ucp_profile&mode=signature

The kinds of things that you might want to put in your signature are listed in this post:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52681&p=421597#p421597

You might also want to look at this post, which gives some perspectives on Rectal Cancer diagnosis and treatment options:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=65286&p=507636#p507636



Thanks Green Tea, i just made one with what I know so far. Hope it comes out ok.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Starting point

Postby catstaff » Tue May 04, 2021 1:49 pm

The hope is that the neoadjuvant chemo would help shrink the primary. If it were just for treating the hypothetical micro-metastases (hypothetical because they are trying to treat something they can't see) then they could do the chemo after the surgery, as for colon cancer. In fact not every center is doing TNT yet, quite a few still do radiation->surgery->chemo from what I have gathered. One big issue with rectal, and a possible reason for lower survival than colon until better surgical techniques were developed fairly recently, was that it's a difficult surgery, especially in a male pelvis. So anything that can make that easier and more likely to have negative margins will contribute to improving the outcomes.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Starting point

Postby MadMed » Tue May 04, 2021 7:20 pm

Weird, i thought I had replied but didn't seem to post.
Thanks catstaff. Your point about the surgery is extremely timely, i am meeting with the surgeon tomorrow. So that'll be one of the questions.
Thank you for your sharing, i hope your DH improves. Have you found a path forward ?
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Starting point

Postby Green Tea » Tue May 04, 2021 11:48 pm

Your signature looks good for now. The next step is for your doctors to get a preliminary estimate of your TNM code which will then serve as a basis for determining your preliminary staging. This step involves various kinds of scans.

  • For determining the T-stage, they will probably want to do an MRI since it will give good information on the size and penetration level of the tumor. They might also want to do a trans-anal ultrasound as it will give accurate information on location of tumor with respect to adjacent organs, muscles and other structures. The doctor needs information like the distance of the tumor from the sphincter muscle complex and distance of the tumor from the ani levator muscle complex (pelvic floor muscles).
  • For determining the N-stage they will use the results of the scans above, or perhaps do a CT scan with contrast to visualize the nearby lymph node ganglia.
  • For determining the M-stage, they will usually use a neck-to-thigh CT-scan with contrast so they can see any remote metastases in the liver, lungs or elsewhere. They might also use an ordinary chest X-ray to look at the lungs.
Thus, the next step for you would be for them to schedule you for a set of scans. There may be several types, depending on what the doctors want. After this they will tell you what your preliminary staging is according to the AJCC guidelines.

If your preliminary stage is estimated as Stage IV, then the doctors should order a panel of BRAF/KRAS/NRAS genetic tests based on the tumor biopsy, because this information is needed for selecting the best Stage IV chemo regimens. They may need to do another flex-sigmoidoscopy or a proctoscopy to get a new biopsy sample if they don't have one in storage.

For the next week or so you could concentrate on finalizing your diagnosis / staging information and updating your signature with whatever new information is found. Having a good understanding of your complete diagnosis is an important first step, before deciding on treatment options:


O Stoma Mia wrote:There is a book that covers many of the issues that you have brought up. Here is the reference:

After Shock: What to Do If the Doctor Gives You -- Or Someone You Love -- a Devastating Diagnosis " by Jessie Gruman

http://www.amazon.com/AfterShock-You---Love---Devastating-Diagnosis/dp/0802715028/

In Chapter 2, "Get Acquainted with Your Disease and Its Treatment", the author spends 18 pages telling why it is so important to gather as much information as possible about
.
  1. Your Diagnosis -- the details of your full diagnosis, and ...
  2. Your Treatment Options -- the details of all the treatment options that are available for your particular diagnosis.
This information is needed in order to understand the situation and to guarantee that you are in fact getting the best treatment for your particular situation.

There is a steep learning curve in the first few weeks, because you will have to get up to speed on all of these new topics in a very short time frame. It is in your best interest to spend the time necessary to accomplish these two important tasks before the time when the doctors make the decisions about your final treatment plan.

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Starting point

Postby MadMed » Wed May 05, 2021 8:11 am

Thanks Green Tea, this lights up the path for me. The CT i had last week was with contrast, i'll do another one if needed but they have not asked yet. The MRI is done, getting results today or tomorrow.
I'll try to keep the signature update and accurate.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Starting point

Postby Green Tea » Thu May 06, 2021 9:24 am

Here are some things you could consider while you are waiting to start TNT :

  • Your hospital ranking
    Ideally, you should be treated at one of the top cancer hospitals in the country. You can check where your hospital ranks by scrolling down the list displayed in the link below. If your hospital is not among the top 50 cancer hospitals in the country then you might want to consider changing to a better one.
    https://health.usnews.com/best-hospitals/rankings/cancer
    .
  • Board certification of your doctors
    If you are starting off with Total Neoadjuvant Therapy (TNT), then your team should have highly qualified, experienced doctors in these three specialties
    • Colon & Rectal Surgery
    • Medical Oncology
    • Radiation Oncology
    You can check on the certification status of your doctors by using the procedure described in the link below. (Use this procedure three different times, once for each specialty above.) You will need an oncologist certified in Radiation Oncology. Is your oncologist certified in both Medical Oncology and Radiation Oncology? If not, when will you be assigned a Radiation Oncologist? Also, your surgeon should have had specialized training and lots of experience in Sphincter Sparing Procedures (SSP) as well as Total Mesorectal Excisions (TME) as these are the cornerstones of rectal cancer surgery.

    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=52349&p=410280#p410280

    Also, who will be the team leader of your medical team -- i.e., who will be the doctor who will be overseeing the deployment of the TNT regimen? It seems to me that it would be the oncologist who should be the team leader, since most of the tasks fall within the domain of oncology.
    .
  • Which type of TNT? In which sequence?
    There are still some discussions you need to have and decisions that need to be made concerning what will actually be done in your TNT regimen and in which order.
    • Chemotherapy - When will the chemotherapy segment be done, and which chemo drug will be used, and for how many weeks/cycles? Will this chemo be mainly by IV infusion (e.g., FOLFOX), or will it be partly oral (pill-based) (e.g., CAPEOX)? Will you need to have an IV port installed on your chest?
    • Chemo/Radiation therapy - What type of RT will be used, Long Course Chemo Radiation Therapy (LCCRT), or Short Course Chemo Radiation Therapy (SCCRT), and at which level of radiation intensity? What type of chemo will be used along with the RT ?
    • Radiation Targeting - What will be the target area for the radiation? How much of, and which part of, the pelvic area will be radiated, and how much will be spared? Which brand of linear accelerator will be used to deliver the radiation (e.g., Varian, Siemens, G.E., etc.) and how long will you have to be strapped in the machine for each radiation session?
  • Informed consent
    Before the start of TNT you will probably be asked to sign one or more "Informed Consent" documents. Part of the informed consent procedure requires that the doctors explain all of the available procedures with their respective benefits and risks, and to explain why the chosen one is the best one for your situation. The doctors are also supposed to answer any questions you might have before you are required to sign the form(s). Be sure they don't simply "steamroller" you into the hospital's preferred "standard-of-care" option, since "standard-of-care" for colorectal cancer is generally focused on patients about 20 years older than you, and on patients that are diagnosed with simple, common "adenocarcinoma", which is not the type of CRC that you have. You have an aggressive, signet-ring-cell type which constitutes only about 1% or 2% of all CRC cases, so the generic "standard-of-care" usually deployed by hospitals does not necessarily apply to you. You need a more personalized, customized treatment plan, not the default "standard-of-care".
    .
  • Surveillance - How often will they be doing scans to check on the progress of TNT? What kind of scans will they be using? CT-scans? MRI-scans?
    .
  • What type of surgery is envisioned?
    There are many variations and modalities for rectal cancer surgery. What does your surgeon currently think, given that your have a T3N0M0 tumor very close to the anal sphincter muscle complex. How much of a rectal stump will be left for doing a re-connection anastomosis when the tumor is removed by surgery? Will a re-connection even be possible, or will the surgeon have to do an APR (Abdominoperineal Resection) instead of ULAR (Ultra Low Anterior Resection)? Will the surgery involve a temporary ileostomy, or a permanent ostomy, or neither? How much delay will there be between the end of chemo/radiation and the surgery date? How long is recovery from surgery likely to take?
    .
  • Full colonoscopy
    Your diagnosis involved a sigmoidoscopy, which is a procedure that examines only the left part of the colon/rectum. When are they going to examine the other 2/3 of your colon? You might have some polyps or lesions there that need to be removed. How are they ever going to know whether the other 2/3 of your colon is clean or not if they do not do a full colonoscopy?
    .
  • Signature - miscellaneous
    There are two typographical errors in your signature and your posts: "MSS pMMR" is the correct spelling for MSI status, not "MSS pMRR", and "regimen" should not have a "t" at the end.

Good luck on your next round of discussions with your doctors! Let us know when you will be starting TNT.

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Starting point

Postby MadMed » Thu May 06, 2021 4:32 pm

Wow, that is incredible resources you just shared and at the perfect time. Thank you!
I fixed the signature and the typo. I've gotten the MRI staging, T3N0M0. I also had a sigmoidoscopy at the surgeon's and he noticed a lymph node right next to the mass that is cancerous. So much for N0 i guess.

  • Hospital rankings: The two hospitals I go to (chemo/rad and surgery) are attached to the Boston main cancer centers, Brigham and Mass general. They're close to me and I can get treatment there. I will start looking at an oncologist in Boston.
  • Team Lead:I had thought about who is driving this bus, i've seen too many times where things go unchecked or fall through the cracks. The oncologist is driving, although my surgeon is very experienced and assertive, he told me he would stay within his area of expertise. This was prompted by me asking him about signatera during his bashing of W&W.
  • Which type of TNT? In which sequence? The sequence is decided already, chemo then CRT followed by surgery after a break. The specifics have not been shared with me yet, but this is what the radiotherapy Dr shared with me: 12 Treatments of FOLFOX followed by long course CRT 28 daily CRT 45 gray (?) (6weeks) and either capecitabine or infusional 5-FU then 8 to 12 weeks break before surgery. I am not sure if there's a break between chemo and CRT. This is right out of the NCCN ver 1.2021 Rectal cancer
  • Informed consent: Thank you for this, YES!
    So oncologist is in charge, which leads me to my other issues. She seems to be rigid, playing to the TNT script with no flexibility. I asked for a Frontier one analysis for example and she pushed back. It's been a week that I've been trying to get a port put in and have not heard back from their surgical dept. I am starting to explore other options, but desperately want to get treatment started.
  • Surveillance:I demanded a mid chemo CT, i would like to know if I am responding at all, i think she relented, but i will need to push again. The surveillance schedule is not clear to me, i need this nailed down.
  • What type of surgery is envisioned? It seems the surgeon is planning for APR or more (prostate/bladder too) He says there seems to be a margin but he's not sure. He told me the surgery is planned now, not after treatment. I hope that doesn't mean remove everything even if the tumor shrinks!
  • Full colonoscopy Another great point, yes, the sigmoidoscopy was an emergency one, the surgeon did another one this week. But I also had a full colonoscopy after the sigmoidoscopy that found 1 polyp that was Polypoid colonic mucosa.I guess not cancerous
  • Signature - miscellaneous Fixed I hope, lemme know.

Thank you for the invaluable guidance and advice, it helps me focus where I need to. I hope to make it to surgery and beyond.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

catstaff
Posts: 177
Joined: Wed Mar 03, 2021 11:37 am

Re: Starting point

Postby catstaff » Thu May 06, 2021 6:35 pm

You seem to be getting a maximum treatment, perhaps due to the tumor grade (G3) and feature (signet-ring cell). The standard for TNT is 8 FOLFOX cycles (12 is usually for colon cancer and they do not do chemorad for that). And they would not normally be talking already about pelvic exenteration for a T3 tumor. T3 means it has not quite penetrated the colon or rectal wall. If external organs were involved that would be T4b. The CRT treatment (45 Grays in 28 fractions) is pretty typical, however. Sometimes they go to 54 Grays as in my DH's case.

As you can see from my signature my hubby had most of an exenteration but he had a T4b tumor that had definitely involved the left seminal vesicle by the time he was diagnosed, which was confirmed by the pathological specimen. Before surgery the surgeons were convinced the bladder was involved due to the MRI, as well as possibly the prostate. The pathologist didn't say anything about the bladder or prostate being involved in the specimen but he can't check every cubic millimeter of the interface. Like yours, it was graded G3 though we'd been told the original biopsy specimen was G2. His tumor was higher, however, so he had a LAR rather than an APR. He has not yet had the colostomy reversed due to going back on chemo.

It's a tough surgery but you can get through it. Just expect a lengthy recovery period.
D/H Dx 10/2019 RC age 61
Clinical T4bN2M1a (common iliac and para-aortic lymph nodes)
MSS KRAS G12D
CRT 11/19-1/20 FOLFOX 3/20-7/20
Pelvic exenteration w/LAR 8/20
ypT4bN0Mx G3 0/14 nodes LVI not seen PNI-
CEA 10/19:20, 1/20-11/20:1.6, 4.3, 3.4, 2.7, 2/21:9.0 3/21:18,40 4/21:28,19, 5/21:13.3,8.6
PET 3/21 recurrence in distal nodes, L5 vertebra, pelvis
FOLFIRI+bev 3/21-

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Starting point

Postby MadMed » Thu May 06, 2021 7:38 pm

Thanks catstaff, hope your DH responds well to the chemo and that it cleans up the cancer. From you signature, seems you two need a good break, i hope you get it.

Yeah, ( i googled pelvic exenteration) i am not sure where that came from. The CT and MRI showed that the tumor had not invaded the prostate. So i was taken aback when the conversation went there. The surgeon did say that he was going to consult his own MRI specialist to confirm and let me know Tuesday if he’s going to take everything out. That was not on my mind, but here we go, something else to freak out about.

Treatment should start Thursday, so my journey starts then. I’ll try to share here as much as I can. There aren’t many RC SRC here and going back to old threads is rough. I hope my experience will be helpful to others that surely will follow.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022


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