Hi, I cannot give any advice but know that I care and feel for you. You are in my prayers.Ymperdiem wrote:Hello,
I'd like to share my mom's colon cancer story and I am seeking advice and help at this helpless/depressed/shocking situation.
..............Thank you so much in advance!!!
SteveNZ wrote:Hi, I cannot give any advice but know that I care and feel for you. You are in my prayers.Ymperdiem wrote:Hello,
I'd like to share my mom's colon cancer story and I am seeking advice and help at this helpless/depressed/shocking situation.
..............Thank you so much in advance!!!
dauofcamom wrote:I don’t have anything to offer other than my sincerest hope that you find the best care and treatment for your mom. My heart goes out to you.
MissMolly wrote:The clinical name of the big, big, big surgery mentioned by the gynecological surgeon is likely what is called a pelvic exteneration.
It includes resection of most/all of the pelvic organs - a complete hysterectomy and resection of the bladder, rectum, and anus and the creation of two stomas (urostomy and sigmoid colostomy). On the United Ostomy Association of America support forum (uoaa.org), there are 2 members who have undergone this surgery.
Karen
weisssoccermom wrote:Welcome to our forum. I truly am sorry for the reasons you have to be here but welcome nevertheless.
On to some of your questions. First of all, the surgery which I believe you are referring to is called a PELVIC EXENTERATION. Does that sound like the name the doctor stated? You need to understand that most commonly, colorectal cancer DOES spread to the lung/liver but that doesn't mean that it can't or doesn't spread to other places. I've been a member of this board for over 11 years and yes, there have been many females who have had their cancer spread to their ovaries, vaginal area, bladder and their uterus. Let's be honest.....cancer can and does metastasize anywhere.
As for the initial confusion regarding the staging of the cancer, a doctor may think ....even based on a CT, PET or MRI that a particular case 'appears' to be a stage I/II but until that biopsy report comes in and gives the doctors a definitive answer, it's impossible to tell, based solely on a colonoscopy, blood results and/or imaging results what stage a patient is. Just as you believed, it is the pathology report from surgery....the report that states the number of nodes affected...along with the other studies, that gives a firm staging. Based solely on what you said about that....everything was done or said prior to surgery was speculation only.
You state that your mom never had a PET/CT between her original one 4+ years ago and the one done at the beginning of 2018. However, did she have a CT scan alone (without the PET)? Did she have an MRI instead of a CT? Did she just have a PET scan? Not all doctors order a CT/PET.....some order just a CT (and only add the PET IF something shows up on the CT) while others opt for the PET and still others opt for the MRI. As long as she was having SOME form of imaging, her doctor was following the correct protocol for your mother. Usually, in the first 5 years, there is a 'standard of care' for the ordering of imaging studies and a normal CEA, liver and/or kidney test has nothing to do with that decision.
I'd like to make sure you understand (based on what you wrote) that NO surgeon should be determining/ordering the chemotherapy....that is the specialty of the oncologist. So your mom's GYN surgeon was completely correct in stating that he can't/shouldn't be recommending or ordering any type of chemotherapy. Furthermore, the ONLY way that they can know definitively that this cancer in your mom's pelvic region is a met from her colon cancer is from the pathology report. If the surgeon stated that this was a colon cancer recurrence without having any news from pathology (and they can get those results during surgery) then that is just wrong. However, let's assume that pathology has confirmed that yes, indeed, this is a recurrence.
You asked why a doctor wouldn't do a biopsy on the ovary IF they knew that the cancer COULD spread there. Well, honestly, as stated earlier, the cancer can and does spread any and everywhere. Following your line of thinking, should a surgeon do a biopsy on every organ in a person's body? It is just not feasible. No doctor is going to biopsy an ovary, a fallopian tube or the uterus just because. In addition, simply doing a biopsy of (for example) an ovary just because the cancer 'could' metastisize there is infeasible. Where exactly would the surgeon biopsy? Let's assume microscopic cancer cells had been in one very small area of the ovary and the surgeon biopsied a few millimeters away and the biopsy results came back normal. Where exactly, without some very concrete reason would a surgeon biopsy? My friend had rectal cancer that ended up metastasizing to her nose....her NOSE for crying out loud....a super UNCOMMON place for any cancer to spread much less rectal cancer. My point is it is unreasonable for a doctor to start doing biopsies just because cancer could spread somewhere. Colorectal cancer patients don't routinely have biopsies of their liver/lung (and again how would you know WHERE in these organs to biopsy??) just because those two organs are the most commonly known organs for colorectal cancer to spread to.
There is absolutely nothing wrong with seeking a second opinion at any time for a patient undergoing colorectal (or any ) cancer. However, if your mother doesn't want to seek out another doctor, you can't really do anything about it. You can't or shouldn't force or coerce her into doing something she doesn't want to....and that includes the big risky surgery that you recommended. I'll be honest....removing a patient's colon, bladder and all of her female organs IS a big surgery and will require a lot of change for your mom. There was at least one member on this board who had the surgery and said that not only was the surgery brutal but the recovery and the emotional changes were extremely difficult. Please understand that without a bladder, your mother would have to have a urinary catheter and without a colon, particularly with that extensive of a surgery, she would be left with a colostomy. I'm NOT saying that a patient can't live with both of those BUT.....that would be your mom's choice and only she can make that determination. In addition, the removal of all the organs and other organs and some of the muscles can be very difficult. Everything in the pelvic region has a place/purpose and when everything is removed, that area simply isn't just blank and everything else is just fine.
Your family has a lot to think about and your mom needs to know what exactly is going on, the chances that chemo will/will not (I have no idea) shrink this enough to do the surgery....she needs to know what the surgery will entail from a surgical standpoint and from the recovery/post recovery phase. She needs to talk to an oncologist, a surgeon who specializes in this type of surgery and honestly, she needs to talk with a counselor.....all right from the get go. You, her family, needs to be well aware as well what all of this entails and needs to help her make this decision, but make no mistake.....whatever your mom decides to do is HER decision and ultimately, no matter what she decides, her family needs to support her.
Your mom (and you) have a hard road ahead of you and I wish you the best of luck. Personally I would get a second opinion....if for no other reason that for peace of mind. It's also possible that some other doctor may decide to add (this is just a thought) some radiation to the mix in the hopes of shrinking the tumors/masses in her pelvis. It's also possible that another center might recommend a chemo wash of the pelvis in addition to/instead of systemic chemo. Then again, those ideas may not be feasible in your mom's case but the only way you will know is if you get a second opinion.
Best of luck.....please let us know how your mom is doing and fill us in on her decisions.
PS....just read your second post. Understand that you WILL be dealing with many different doctors.
ONCOLOGIST.....a doctor who specializes in chemotherapy and does NOT do surgery.
SURGEON....a doctor who specializes in surgery (there are many many different types of surgeons who can specialize in different areas)
RADIATION ONCOLOGIST (not to be confused with a radiologist who reads X-rays, CT scans, etc.) a doctor who specializes in radiation treatments for patients.
No oncologist should be telling a patient what surgery to have, what surgery is possible, etc. AND no surgeon should be telling any patient whether or not he/she needs chemo or what type of chemo to have. No radiation oncologist should be telling a patient about a surgical choice or chemo either. A surgeon is the doctor who deals ONLY with the surgery. The oncologist is the doctor who deals with the chemotherapy and a radiation oncologist is the doctor that takes care of the patient's radiation treatments.
weisssoccermom wrote:I'm only guessing here, but even if the chemo shrinks the tumors, they are still likely going to take all of them out. When cancer is found, for example, on the outside of the colon, they remove that section of the colon. You are correct that cancer will almost certainly spread to the interior and/or more of the exterior. It's highly unlikely that a surgeon would even consider trying to 'scrape' the outside of the uterus, ovaries, etc. Why would they? Their first thought would be that your mom could easily live without these organs (same for the bladder) and the second thought (perhaps the first....regardless irrelevant) would be that they just wouldn't take the chance that the tumor cells had remained solely on the surface of the organ. You need to understand that even the PET/CT can't definitely tell you that there aren't some microscopic cancer cells that have gone further into the ovary (as an example). When colorectal cancer starts in the inside of the colon/rectum, it will eventually grow into the colon/rectal wall. It may, at first spread internally, but the cancerous mass will grown inward and oftentimes it can't be detected until a biopsy is done or more likely until the ovary (example) is completely removed and looked at by the pathologist. What the CT/PET might show and what the pathologist will see can be entirely different stories.
To answer your question....it is probable that a CT would have picked up something growing in your mom's pelvic region BUT...I have known members who have had 6 month CT exams ....told that everything was fine and 6 months later they have large masses. So honestly, there is no definitive way to know. Besides, your mom didn't have a CT (I would though, ask the onc why he never ordered a CT, CT/PET or MRI in the 4.5 years that your mom was his patient.) and there's no going back now.
You mom's uterus could be enlarged because of fibroids or something else. My guess would be that even if chemo obliterated all the cancer cells, a surgeon would HIGHLY recommend a pelvic exenteration considering the extent of spread that you had mentioned. The fact that your mom had the standard chemo and the cancer came back indicates that either the cancerous cells were in the pelvis all along, just went dormant and weren't killed by the chemo or that some cells were lurking microscopically in her somewhere else and also weren't killed by the chemo. I would hope that your onc would get a CT/PET, MRI or CT or your mom's ENTIRE body.....chest, abdomen and pelvis (obviously this area has been covered) if not already done. Do you know what part(s) of the body were scanned during the most recent CT?
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