Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

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friendship
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Joined: Mon Feb 04, 2019 9:12 am

Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby friendship » Mon Feb 04, 2019 9:19 am

Hi,

Received my mom's diagnosis on Saturday as Stage 3 adenocarcinoma with signet cells. Googled "signet cell" and now I am scared to death.

Our oncologist is getting her started on chemo radiation for 6 weeks starting next week.

Any kind of input is really appreciated.

I can't lose my mom. Please help.

Regards
friendship

Lee
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Joined: Sun Apr 16, 2006 4:09 pm

Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby Lee » Mon Feb 04, 2019 3:33 pm

Hi and welcome, sorry for the reason you are here.

Yes signet cell can be scary, butt we do have a few survivors. Hopefully some will chime in here soon.

My best advice if you have not already done so, get a 2nd opinion at a major cancer hospital or treatment center. They tend to be on the leading edge of tomorrows standard care.

And make sure a colon rectal surgeon does her surgery vs a general surgeon. You want that extra bit a training.

All the best to your mom,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Punky44
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Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby Punky44 » Mon Feb 04, 2019 4:11 pm

I’m sorry you are here. I have seen signet cell discussed here before so make sure to browse the search and try to connect with someone here who may be more of an expert on the topic.

I will keep you and your mom in my prayers. Believe me, I know the feeling of “cant lose” someone you love so much.
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
Completed 8 rounds of neoadjuvant Folfox 11/5/18 - 2/11/19
Current CEA 7.0

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

friendship
Posts: 11
Joined: Mon Feb 04, 2019 9:12 am

Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby friendship » Mon Feb 04, 2019 9:26 pm

Lee wrote:Hi and welcome, sorry for the reason you are here.

Yes signet cell can be scary, butt we do have a few survivors. Hopefully some will chime in here soon.

My best advice if you have not already done so, get a 2nd opinion at a major cancer hospital or treatment center. They tend to be on the leading edge of tomorrows standard care.

And make sure a colon rectal surgeon does her surgery vs a general surgeon. You want that extra bit a training.

All the best to your mom,

Lee


Hi Lee,

Thank you for all the advice. Definitely going for a second opinion.

It's good to see you are 10 years NED.

-friendship

friendship
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Joined: Mon Feb 04, 2019 9:12 am

Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby friendship » Mon Feb 04, 2019 9:28 pm

Punky44 wrote:I’m sorry you are here. I have seen signet cell discussed here before so make sure to browse the search and try to connect with someone here who may be more of an expert on the topic.

I will keep you and your mom in my prayers. Believe me, I know the feeling of “cant lose” someone you love so much.


Hi Punky44,

Thank you for the kind words.
Hope your mom is doing well.

-friendship

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O Stoma Mia
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Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby O Stoma Mia » Mon Feb 04, 2019 9:58 pm

friendship wrote:...
Any kind of input is really appreciated...

Welcome to the Forum.

It would be good if you could provide more information about your mother's situation so that others here can determine whether or not they have anything pertinent to say.

There are indeed some folks here who can provide input in the SRC area, for example,

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60493&p=479339#p479339

however, we need more information from you before making any suggestions.

For example, where is the tumor located? how large is the tumor? what grade or level of differentiation is the tumor? How did they get a tissue sample from the tumor? during a colonoscopy? is there a colonoscopy report? what did it say? are there scan reports? what kind? CT? MRI? ultrasound? X-ray? what did the scan reports say? are there any tumor-marker blood test results, e.g., CEA.? if so, what is the pre-chemo/radiation level of CEA? what kind of hospital is doing the chemo/radiation? what are the qualifications and experience of your oncologist? when will you decide on who the surgeon will be? etc.

At this point in time you are a Newly Registered User with limited Forum privileges. You need to post more messages before you can be promoted to regular status with more privileges. One way to do that is to post some messages that provide the missing information.

friendship
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Joined: Mon Feb 04, 2019 9:12 am

Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby friendship » Tue Feb 05, 2019 10:57 am

O Stoma Mia wrote:
friendship wrote:...
Any kind of input is really appreciated...

Welcome to the Forum.

It would be good if you could provide more information about your mother's situation so that others here can determine whether or not they have anything pertinent to say.

There are indeed some folks here who can provide input in the SRC area, for example,

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=60493&p=479339#p479339

however, we need more information from you before making any suggestions.

For example, where is the tumor located? how large is the tumor? what grade or level of differentiation is the tumor? How did they get a tissue sample from the tumor? during a colonoscopy? is there a colonoscopy report? what did it say? are there scan reports? what kind? CT? MRI? ultrasound? X-ray? what did the scan reports say? are there any tumor-marker blood test results, e.g., CEA.? if so, what is the pre-chemo/radiation level of CEA? what kind of hospital is doing the chemo/radiation? what are the qualifications and experience of your oncologist? when will you decide on who the surgeon will be? etc.

At this point in time you are a Newly Registered User with limited Forum privileges. You need to post more messages before you can be promoted to regular status with more privileges. One way to do that is to post some messages that provide the missing information.


Hi,

More details about the diagnosis :

The first two biopsies were inconclusive.
The third biopsy said "adenocarcinoma with signet ring cells, grade 3". It also included the terms "perineural tumor invasion" and "no lymphovascular emboli".

Colonoscopy - "at 4 cm from the anal verge circumferential ulcero infiltrative stricturing growth, colonoscope could not pass through the lesion. Gastroscope used to negotiate - Proximal extent of the lesion upto 10cm, rest of the transverse colon shows normal mucous and vascularity"

PET scan - "scan findings are in keeping with the primary FDG and malignancy involving the ano-rectum with tracer avid lymph nodes, FDG avid focus to the right adrenal is likely physiological in Brown fat, follow up is suggested"

All her blood tests results are within normal ranges
CEA - 1.4

We have brought her to the best oncologist in the region as advised by family and friends.

Our oncologist said that the disease is "contained" and no need to worry excessively . I didn't quite understand that.

She is also told to be stage 3. Does staging happen before surgery?

Both our surgeon and oncologist are known to be very straightforward. Although they said she has a "aggressive" tumor they were pretty calm when they told us the diagnosis. He also mentioned "signet" is not that rare.

All the googling had me crying through the night yesterday. I searched "signet" in the forum today and found quite a few people with it.

My mom is physically strong but I am worried about her mental health. I know she is trying to be brave and put on a strong face. How do you support them mentally? I'm totally at loss regarding this.

To all the people that replied, thank you so much. It is really appreciated.

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O Stoma Mia
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Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby O Stoma Mia » Tue Feb 05, 2019 12:49 pm

Thank you for your reply and for providing the additional information. At this point, I will address only the issue of your mother's tentative diagnosis, in particular, the tumor type as reported in the biopsy report.

Apparently, your mother was diagnosed with "Adenocarcinoma with signet cells". This particular diagnosis is one of two possible SRC diagnoses. In essence, it is an "early stage" SRC, not a "late-stage" SRC.

The details for the two definitions and diagnosis codes for Signet Ring Cell are given below:

Colon and rectum
ICD10: C18-C20

A usually aggressive, poorly differentiated invasive adenocarcinoma characterized by the presence of malignant glandular cells in which the nucleus is pressed to one side by the presence of intracytoplasmic mucus.

Signet ring cell carcinoma of the colon and rectum
This variant of adenocarcinoma is defined by the presence of > 50% of tumour cells with prominent intracytoplasmic mucin, typically with displacement and moulding of the nucleus. Signet-ring cells can occur within the pools of mucinous adenocarcinoma or in a diffusely infiltrative process with minimal extracellular mucin in a linitis-plastica pattern. Large signet-ring cells can be termed "globoid cells". Some signet ring cell carcinomas are MSI-H and are low-grade, but those that lack MSI-H are usually highly aggressive 6 .

Carcinomas with signet-ring cell areas of < 50% are categorized as Adenocarcinoma with a signet-ring cell component. ◄◄ Note

Reference: https://codes.iarc.fr/code/2981


Please note that there are two different possible diagnosis codes, corresponding to two different levels or stages of SRC, as follows:

  • 8490 - Signet ring cell carcinoma of the colon and rectum: "This variant of adenocarcinoma is defined by the presence of > 50% of tumour cells with prominent intracytoplasmic mucin, typically with displacement and moulding of the nucleus
  • 8140 - Adenocarcinoma with a signet-ring cell component: "Carcinomas with signet-ring cell areas of < 50%"
The difference between the two is that the first one contains more than 50% SRC cells, and the second one contains less than 50% SRC cells.

Apparently, your mother has been diagnosed with "8140 - Adenocarcinoma with a signet ring cell component", which is the less aggressive of the two (i.e., early stage SRC).

This may explain why the doctors are not particularly concerned at the moment. Since your mother has been tentatively staged as Stage IIIA (with no remote metastases), this means that all of the malignancy is thought to be contained in the tumor itself and the adjacent lymph nodes, which will all soon be removed completely by surgery (after the 6 weeks of neoadjuvant chemo/radiation, of course).

The 6 weeks of chemo/radiation should be fairly effective in attacking any circulating tumor cells that happen to be in the pelvic region.

After the surgery to remove the primary tumor and all of the adjacent lymph nodes, there will be about 4 months of adjuvant ("mop-up") chemotherapy to take care of circulating tumor cells that may be present in the rest of the body.

This is my personal view of the situation. But please keep in mind that I am not a doctor or medical professional. This is only my personal opinion after reading some of the on-line articles on Signet Ring Cell carcinoma.

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O Stoma Mia
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Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby O Stoma Mia » Tue Feb 05, 2019 1:36 pm

Here is a draft of your signature, showing the data known to date. Some items are missing and need to be specified later, when known.

Eventually you should create a proper signature in your profile so that other members here can see your mother's situation at a glance.

Caregiver to Mom/ F, xx years old
DX: Rectal Cancer (RC) ,
Tumor Location: 4 cm from AV
Tumor type: Adenocarcinoma with signet ring-cell features.
Tumor size: approx 6 cm
Tumor grade: G3: Poorly differentiated (high grade)
TNM code: TxN1aM0 (tentative staging)
Stage: Stage IIIA (tentative)
Positive lymph nodes: Tentatively: 1 (one) - (inferred by CT, and PET/CT, not by biopsy)
Mets: None observed on CT or PET/CT
Baseline CEA value: 1.4 ng/ml
Lymphovascular invasion (LVI) - absent
Perineural invasion (PNI) - present
Surgical margins: N/A (margins cannot be determined until after primary surgery)
MSI status (if known) – Important!! Adjuvant therapy cannot be determined without this finding.
Primary surgery type: Most probably ULAR, Either laparascopic or open resection (To be decided later)
Ostomy surgery: Ileostomy most likely. Decision at time of primary surgery
Radiation therapy: Chemo/radiation – 6 weeks
Adjuvant Chemotherapy: e.g., XELOX, CAPEOX, FOLFOX, etc., to be determined later

friendship
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Joined: Mon Feb 04, 2019 9:12 am

Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby friendship » Tue Feb 05, 2019 9:16 pm

O Stoma Mia wrote:Here is a draft of your signature, showing the data known to date. Some items are missing and need to be specified later, when known.

Eventually you should create a proper signature in your profile so that other members here can see your mother's situation at a glance.

Caregiver to Mom/ F, xx years old
DX: Rectal Cancer (RC) ,
Tumor Location: 4 cm from AV
Tumor type: Adenocarcinoma with signet ring-cell features.
Tumor size: approx 6 cm
Tumor grade: G3: Poorly differentiated (high grade)
TNM code: TxN1aM0 (tentative staging)
Stage: Stage IIIA (tentative)
Positive lymph nodes: Tentatively: 1 (one) - (inferred by CT, and PET/CT, not by biopsy)
Mets: None observed on CT or PET/CT
Baseline CEA value: 1.4 ng/ml
Lymphovascular invasion (LVI) - absent
Perineural invasion (PNI) - present
Surgical margins: N/A (margins cannot be determined until after primary surgery)
MSI status (if known) – Important!! Adjuvant therapy cannot be determined without this finding.
Primary surgery type: Most probably ULAR, Either laparascopic or open resection (To be decided later)
Ostomy surgery: Ileostomy most likely. Decision at time of primary surgery
Radiation therapy: Chemo/radiation – 6 weeks
Adjuvant Chemotherapy: e.g., XELOX, CAPEOX, FOLFOX, etc., to be determined later


Hi O Stoma Mia,

Thank you so much for all the info.
Will try to create a signature as soon as possible.

-friendship

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O Stoma Mia
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Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby O Stoma Mia » Wed Feb 06, 2019 10:48 am

friendship wrote:... Our oncologist is getting her started on chemo radiation for 6 weeks starting next week.

Any kind of input is really appreciated.

For chemo radiation, it is important to follow the instructions closely. There are two areas that I think should be mentioned especially.
  • Hydration - It is very important to keep hydrated by drinking water in order to keep the body's electrolytes in balance. If not, kidney stones or bladder stones can quickly develop and require the suspension of treatment until these problems are solved. Also, you can use sports drinks like Gatorade as a supplement just to make sure that the body is replenishing its electrolytes.
  • Medications/chemo - Usually the chemo component is given in pill form to be taken twice daily 30 minutes after meals. If this is how they will be delivering the chemo, then it is very important to keep to the schedule and not forget to eat twice a day and take the pills at the right time. You can buy pill boxes with 14 compartments (7 days x a.m./p.m.) to organize the meds and make sure that none of the pill-taking sessions are skipped.
.

friendship
Posts: 11
Joined: Mon Feb 04, 2019 9:12 am

Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby friendship » Wed Feb 06, 2019 11:30 pm

O Stoma Mia wrote:
friendship wrote:... Our oncologist is getting her started on chemo radiation for 6 weeks starting next week.

Any kind of input is really appreciated.

For chemo radiation, it is important to follow the instructions closely. There are two areas that I think should be mentioned especially.
  • Hydration - It is very important to keep hydrated by drinking water in order to keep the body's electrolytes in balance. If not, kidney stones or bladder stones can quickly develop and require the suspension of treatment until these problems are solved. Also, you can use sports drinks like Gatorade as a supplement just to make sure that the body is replenishing its electrolytes.
  • Medications/chemo - Usually the chemo component is given in pill form to be taken twice daily 30 minutes after meals. If this is how they will be delivering the chemo, then it is very important to keep to the schedule and not forget to eat twice a day and take the pills at the right time. You can buy pill boxes with 14 compartments (7 days x a.m./p.m.) to organize the meds and make sure that none of the pill-taking sessions are skipped.
.


Thank you O Stoma Mia

Will definitely take care about the points mentioned.

I have a question about the wait time between the chemo radiation and surgery. Our oncologist said that the chemo radiation would be for 6 weeks and then a 6 week break, then surgery. I am so worried - what if the cancer spreads in those 6 weeks of break. She is starting chemo radiation on Monday. This one week wait seems so long, how do we just wait and do nothing for 6 weeks?

-friendship

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O Stoma Mia
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Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby O Stoma Mia » Thu Feb 07, 2019 4:10 am

friendship wrote:... I have a question about the wait time between the chemo radiation and surgery. Our oncologist said that the chemo radiation would be for 6 weeks and then a 6 week break, then surgery. I am so worried - what if the cancer spreads in those 6 weeks of break. She is starting chemo radiation on Monday. This wait seems so long, how do we just wait and do nothing for 6 weeks?
-friendship

I think that it is the normal standard-of-care protocol for neoadjuvant chemo/radiation to wait a month or two before attempting surgery. I don't think this would be a problem, but there may be other members here who have been told the specific reason why there is such a long wait. In my opinion, the wait is necessary in order to allow the radiation-induced inflammation to subside so that surgery can proceed without running into problems.

One of the biggest possible problems with excessively early surgery is that the anastomosis junction connection may not be very good or secure if the stapling job is done too soon after completion of the active radiation sessions, thereby allowing leaks to occur at the junction with subsequent severe sepsis in the abdominal cavity. Furthermore, it is often said that radiation continues to act on the body even weeks or months after it has been discontinued, so I think that there would be sufficient prolonged protection during that 6-week waiting period. In other words, it is simply not true that nothing is being done during those 6 weeks. In fact, the radiation is continuing to act on the body, but at a reduced rate.

Here is a quote from a review of 141 patients who underwent neoadjuvant chemo/radiation. It shows that the earliest date for surgery in the sample was 4 weeks after chemo/radiation, and the latest date for surgery in the sample was 8 weeks after chemo/radiation.

... Surgical treatment of the tumors was performed 4 to 8 weeks after completion of the chemoradiation. Surgical procedures included abdominoperineal resection, low anterior resection, transanal excision, and exploratory laparotomy. Since 1996, abdominoperineal resection and low anterior resection have been performed using sharp dissection according to the principles of total mesorectal excision. Pathologic response on postoperative staging was standardized such that the deepest bowel layer with microscopically viable tumor cells determined the T stage...

Reference: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1421320/


I think that, at this point in time, your Mom's focus should be on making it through all 6 weeks of chemo/radiation without suspension or termination of treatment. She needs to closely follow the recommended advice and instructions.

Question: Can you find out what kind of radiation machine they will be using for the chemo/radiation? Does this machine have the IMRT / IGRT capability?
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936&p=372445#p372445
Last edited by O Stoma Mia on Thu Feb 07, 2019 11:02 am, edited 1 time in total.

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O Stoma Mia
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Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby O Stoma Mia » Thu Feb 07, 2019 10:52 am

...She is also told to be stage 3. Does staging happen before surgery?

Normally they do staging before surgery, where the "T", "N" and "M" components of the TNM staging system are assessed through various imaging procedures. The final staging is done after surgery, and before the beginning of adjuvant therapy, by making use of the pathology report based on the resected tumor specimen, but if the patient has had pre-surgery neoadjuvant treatment, then the post surgery pathology report will have a "y" prefix, signifying that the "T"and "N" components may have changed since the original assessment. Normally, it is the original pre-treatment clinical staging that is used to definitively categorize the patient, not the post-treatment staging, because the pre-treatment clinical staging indicates the stage when the cancer was at its highest risk level, which is what will determine the level of aggressiveness to be chosen for the first-line treatment.

They usually estimate the "N"and "M" components from CT scans, or PET scans, but the "T" component (level of tumor growth into or through the rectum wall) is often estimated by using the more accurate Magnetic Resonance Imaging (MRI), or Endorectal Ultrasound (ERUS) procedures.

What is puzzling in your Mom's case is that the oncologist has said "Stage 3", apparently without providing any of the usual supporting information, such as the CT scan report details or MRI report details. To be complete, the staging should indicate the full TNM staging code (including any suffixes, e.g., T4bN1aM0) and the complete staging code, also including the appropriate suffix (i.e., Stage IIIA, or Stage IIIB, or Stage IIIC, as the case may be)

The PET scan report refers to "tracer avid lymph nodes"(plural) but it does not say exactly how many lymph nodes are involved. The number of suspect lymph nodes seen on the image is an important data item and should be stated explicitly, because the precise level of Stage III (i.e., whether it is Stage IIIA, Stage IIIB, or Stage IIIC depends on the malignant lymph node count in the images)

Would you be able to clarify this with the oncologist on your next visit? The main issues are:

  • What is the "T" level? T1, T2, T3, or T4? (This could make a big difference in the assessed risk level)
  • How many lymph nodes, exactly, are suspected of being malignant?

Thank you.

friendship
Posts: 11
Joined: Mon Feb 04, 2019 9:12 am

Re: Mom diagnosed with rectal cancer - Adenocarcinoma with signet cells - SCARED

Postby friendship » Thu Feb 07, 2019 12:37 pm

O Stoma Mia wrote:

Question: Can you find out what kind of radiation machine they will be using for the chemo/radiation? Does this machine have the IMRT / IGRT capability?
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48936&p=372445#p372445


Definitely asking about this during our next appointment.

Radiation working even after the treatment is completed is reassuring (I guess?).

Thanks you O Stoma Mia


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