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I'm really sorry
I'm really sorry that you are going through this. It is scary because we rely on the doctors to give us information and lead us in the right direction.
First, the new doctor that your mom saw - is he/she a gyn/onc? Can they see her as a regular patient? Did you try to make an appointment?
It sounds like you may need to find a new dr and start from scratch. After the first appt and they review the PET results, they should give you an appt for whatever the next step should be - no run arounds. They should also answer your questions about staging, treatment, etc.
Good luck. My prayers are with you and your mom. I hope that you can quickly find a doctor, and start getting the answers that you need.
Tracey0 -
Please request a tumor board
Please request a tumor board to review your moms med records such as blood work, reports from both DR's she has seen, pet scan so the panel on tumor board can arrive at a plan and strategy to begin to get a accurate diagnoses of her current medical condition (cervical cancer). If more tests are required by Dr's, then have them done and then have tumor board meet again to determine the stage, review biopsy from a path report, treatment plan (surgery or not), and to assign her case to the best qualified medical oncologist. I would not use the first DR you mentioned. If you feel the 2nd /current DR is assertive, answering your questions, and is responsive, then follow up. Inaction from med team/Dr is not benefical to patients and im sorry your experience has been frustrating. Its time to take charge.
Tumor Board
A treatment planning approach in which a number of doctors who are experts in different specialties review and discuss the medical condition and treatment options of a patient. In cancer treatment, a tumor board review may include that of a medical oncologist (who provides cancer treatment with drugs), a surgical oncologist (who provides cancer treatment with surgery), and a radiation oncologist (who provides cancer treatment with radiation). Also a pathologist, GYN, radiologist, oncology nurse, and other specialists can attend. In many hospitals, all treatment options are cross-referenced against a standard, such as the National Comprehensive Cancer Network (NCCN) guidelines or American Society of Clinical Oncology (ASCO) guidelines, even though they may not exactly apply to every patient.
Screening
A Pap test can detect abnormal cells in the cervix. This is the precancerous stage, when the abnormal cells (dysplasia) exist only in the outer layer of the cervix and haven't invaded deeper tissues. If untreated, the abnormal cells may convert to cancer cells, which may spread in various stages into the cervix, the upper vagina and the pelvic areas and to other parts of your body. Cancer or precancerous conditions that are caught at the pre-invasive stage are rarely life-threatening and typically require only outpatient treatment.
■HPV DNA test. Your doctor also may use a lab test called the HPV DNA test to determine whether you are infected with any of the 13 types of HPV that are most likely to lead to cervical cancer. Like the Pap test, the HPV DNA test involves collecting cells from the cervix for lab testing. It can detect high-risk strains of HPV in cell DNA before changes to the cells of the cervix can be seen.
The HPV DNA test isn't a substitute for regular Pap screening, and it's not used to screen women younger than 30 with normal Pap results. Most HPV infections in women of this age group clear up on their own and aren't associated with cervical cancer.
Diagnosis may involve:
■Examine your cervix. During an exam called colposcopy, your doctor uses a special microscope (colposcope) to examine your cervix for abnormal cells. If unusual areas are identified, your doctor may take a small sample of cells for analysis (biopsy).
■Take a sample of cervical cells. During a biopsy procedure your doctor removes a sample of unusual cells from your cervix using special tools. During one type of biopsy — punch biopsy — your doctor uses a circular knife to remove a small circular section of the cervix. Other special types of biopsy may be used depending on the location and size of the unusual area of cells.
■Remove a cone-shaped area of cervical cells. A cone biopsy (conization) — so called because it involves taking a cone-shaped sample of the cervix — allows your doctor to obtain deeper layers of cervical cells for laboratory testing. Your doctor may use a scalpel, laser or electrified wire loop to remove the tissue
If the woman is diagnosed with cervical cancer, the health care provider will order more tests to determine how far cancer has spread. This is called staging. Tests may include:
Staging
If your doctor determines that you have cervical cancer, you'll undergo further tests to determine whether your cancer has spread and to what extent — a process called staging. Your cancer's stage is a key factor in deciding on your treatment. Staging exams include:
■Imaging tests. Tests such as X-rays, computerized tomography (CT) scans and magnetic resonance imaging (MRI) help your doctor determine whether your cancer has spread beyond your cervix.
■Visual examination of your bladder and rectum. Your doctor may use special scopes to see inside your bladder (cystoscopy) and rectum (proctoscopy).
Your doctor then assigns your cancer a stage — typically a Roman numeral. Stages of cervical cancer include:
Stages
■Stage 0. Also called carcinoma in situ or noninvasive cancer, this early cancer is small and confined to the surface of the cervix.
■Stage I. Cancer is confined to the cervix.
■Stage II. Cancer at this stage includes the cervix and uterus, but hasn't spread to the pelvic wall or the lower portion of the vagina.
■Stage III. Cancer at this stage has moved beyond the cervix and uterus to the pelvic wall or the lower portion of the vagina.
■Stage IV. At this stage, cancer has spread to nearby organs, such as the bladder or rectum, or it has spread to other areas of the body, such as the lungs, liver or bones.
Mayo link below on Cervical cancer
http://www.mayoclinic.com/health/cervical-cancer/ds001670 -
Thank youtmc576 said:I'm really sorry
I'm really sorry that you are going through this. It is scary because we rely on the doctors to give us information and lead us in the right direction.
First, the new doctor that your mom saw - is he/she a gyn/onc? Can they see her as a regular patient? Did you try to make an appointment?
It sounds like you may need to find a new dr and start from scratch. After the first appt and they review the PET results, they should give you an appt for whatever the next step should be - no run arounds. They should also answer your questions about staging, treatment, etc.
Good luck. My prayers are with you and your mom. I hope that you can quickly find a doctor, and start getting the answers that you need.
Tracey
The first doc is a gyn/onc. Can you blieve his nurse just called today to set up a surgical exam? When she called, after I told her Mom switched to a new gyn/onc that she sees Monday, she was nice enough to tell me some of the PET scan results. She said that it did show "something" in the pelvic or cervical region and that it has spread to the nodes in the pelvic region. I asked if they had staged it yet and she said no. But, she did say she would send everything to the gyn/onc today to where they'll have it in time for Mom's appointment Monday.
I really hope the new gyn/onc doesn't mind questions because I've got tons and I can't find them on my own. I'd like to know once it's in the nodes how quickly it can spread to other places and to know how bad it is that it's spread to the nodes (although I think it's bad, it could be no big deal like Mom thinks).
I have to give the new gyn/onc credit. They seem very willing to help my mom out, however they can. His nurse told me that he looks over each patient's file before their appointment is even scheduled the first time, so I found that impressive. The first one she saw wouldn't introduce himself, he sent an ob/gyn in to talk to her, and the ob/gyn even said "he's a very busy man, so he may not talk to you at all". I was really put off by that. I'm sure he is busy, but that just seemed rude and insensitive on their part. He didn't even look at her file or take her history, he had the ob/gyn do all that. Maybe it's where I've never went through this before, but it just didn't seem "right".0 -
Good luck on MondayBelle82 said:Thank you
The first doc is a gyn/onc. Can you blieve his nurse just called today to set up a surgical exam? When she called, after I told her Mom switched to a new gyn/onc that she sees Monday, she was nice enough to tell me some of the PET scan results. She said that it did show "something" in the pelvic or cervical region and that it has spread to the nodes in the pelvic region. I asked if they had staged it yet and she said no. But, she did say she would send everything to the gyn/onc today to where they'll have it in time for Mom's appointment Monday.
I really hope the new gyn/onc doesn't mind questions because I've got tons and I can't find them on my own. I'd like to know once it's in the nodes how quickly it can spread to other places and to know how bad it is that it's spread to the nodes (although I think it's bad, it could be no big deal like Mom thinks).
I have to give the new gyn/onc credit. They seem very willing to help my mom out, however they can. His nurse told me that he looks over each patient's file before their appointment is even scheduled the first time, so I found that impressive. The first one she saw wouldn't introduce himself, he sent an ob/gyn in to talk to her, and the ob/gyn even said "he's a very busy man, so he may not talk to you at all". I was really put off by that. I'm sure he is busy, but that just seemed rude and insensitive on their part. He didn't even look at her file or take her history, he had the ob/gyn do all that. Maybe it's where I've never went through this before, but it just didn't seem "right".
I'm glad that the new dr seems much, much better than the first. Sometimes I think the waiting is the worst part. Once you find out the facts, even if it is not "good" news, you can begin to get your bearings and "do" something. Please let us know what the dr says. I will be praying for you.0 -
Thank you for all the infoHeartofSoul said:Please request a tumor board
Please request a tumor board to review your moms med records such as blood work, reports from both DR's she has seen, pet scan so the panel on tumor board can arrive at a plan and strategy to begin to get a accurate diagnoses of her current medical condition (cervical cancer). If more tests are required by Dr's, then have them done and then have tumor board meet again to determine the stage, review biopsy from a path report, treatment plan (surgery or not), and to assign her case to the best qualified medical oncologist. I would not use the first DR you mentioned. If you feel the 2nd /current DR is assertive, answering your questions, and is responsive, then follow up. Inaction from med team/Dr is not benefical to patients and im sorry your experience has been frustrating. Its time to take charge.
Tumor Board
A treatment planning approach in which a number of doctors who are experts in different specialties review and discuss the medical condition and treatment options of a patient. In cancer treatment, a tumor board review may include that of a medical oncologist (who provides cancer treatment with drugs), a surgical oncologist (who provides cancer treatment with surgery), and a radiation oncologist (who provides cancer treatment with radiation). Also a pathologist, GYN, radiologist, oncology nurse, and other specialists can attend. In many hospitals, all treatment options are cross-referenced against a standard, such as the National Comprehensive Cancer Network (NCCN) guidelines or American Society of Clinical Oncology (ASCO) guidelines, even though they may not exactly apply to every patient.
Screening
A Pap test can detect abnormal cells in the cervix. This is the precancerous stage, when the abnormal cells (dysplasia) exist only in the outer layer of the cervix and haven't invaded deeper tissues. If untreated, the abnormal cells may convert to cancer cells, which may spread in various stages into the cervix, the upper vagina and the pelvic areas and to other parts of your body. Cancer or precancerous conditions that are caught at the pre-invasive stage are rarely life-threatening and typically require only outpatient treatment.
■HPV DNA test. Your doctor also may use a lab test called the HPV DNA test to determine whether you are infected with any of the 13 types of HPV that are most likely to lead to cervical cancer. Like the Pap test, the HPV DNA test involves collecting cells from the cervix for lab testing. It can detect high-risk strains of HPV in cell DNA before changes to the cells of the cervix can be seen.
The HPV DNA test isn't a substitute for regular Pap screening, and it's not used to screen women younger than 30 with normal Pap results. Most HPV infections in women of this age group clear up on their own and aren't associated with cervical cancer.
Diagnosis may involve:
■Examine your cervix. During an exam called colposcopy, your doctor uses a special microscope (colposcope) to examine your cervix for abnormal cells. If unusual areas are identified, your doctor may take a small sample of cells for analysis (biopsy).
■Take a sample of cervical cells. During a biopsy procedure your doctor removes a sample of unusual cells from your cervix using special tools. During one type of biopsy — punch biopsy — your doctor uses a circular knife to remove a small circular section of the cervix. Other special types of biopsy may be used depending on the location and size of the unusual area of cells.
■Remove a cone-shaped area of cervical cells. A cone biopsy (conization) — so called because it involves taking a cone-shaped sample of the cervix — allows your doctor to obtain deeper layers of cervical cells for laboratory testing. Your doctor may use a scalpel, laser or electrified wire loop to remove the tissue
If the woman is diagnosed with cervical cancer, the health care provider will order more tests to determine how far cancer has spread. This is called staging. Tests may include:
Staging
If your doctor determines that you have cervical cancer, you'll undergo further tests to determine whether your cancer has spread and to what extent — a process called staging. Your cancer's stage is a key factor in deciding on your treatment. Staging exams include:
■Imaging tests. Tests such as X-rays, computerized tomography (CT) scans and magnetic resonance imaging (MRI) help your doctor determine whether your cancer has spread beyond your cervix.
■Visual examination of your bladder and rectum. Your doctor may use special scopes to see inside your bladder (cystoscopy) and rectum (proctoscopy).
Your doctor then assigns your cancer a stage — typically a Roman numeral. Stages of cervical cancer include:
Stages
■Stage 0. Also called carcinoma in situ or noninvasive cancer, this early cancer is small and confined to the surface of the cervix.
■Stage I. Cancer is confined to the cervix.
■Stage II. Cancer at this stage includes the cervix and uterus, but hasn't spread to the pelvic wall or the lower portion of the vagina.
■Stage III. Cancer at this stage has moved beyond the cervix and uterus to the pelvic wall or the lower portion of the vagina.
■Stage IV. At this stage, cancer has spread to nearby organs, such as the bladder or rectum, or it has spread to other areas of the body, such as the lungs, liver or bones.
Mayo link below on Cervical cancer
http://www.mayoclinic.com/health/cervical-cancer/ds00167
I really appreciate it. I don't feel so lost on what to do next. When the nurse from the first gyn/onc called today, she plainly told me the only "battle plan" the doc had was doing the PET scan (done) and the surgical exam. I don't understand why if they know it's in the nodes, they waited three weeks or better to call to set up the exam. I know cervical cancer is slow "moving", but I can't get past the feeling that if it's in the nodes, it's worse than they thought. The oncologist she saw yesterday (for an IV of Iron) made it sound like stage one or two, and I read something today and made it sound like if it's in the nodes it's stage three. He actually didn't call it a tumor yesterday, but a little leision. Every other doctor has called it a tumor. The GYN that told her it is cancer actually said, "her entire cervix is a tumor and her vagina is almost full of the tumor" that sounds like a higher stage right there. He said he didn't have to do a biopsy because the tumor was so large he could get "enough" just by doing a PAP.
I won't lie. I hadn't even heard of a tumor board until you mentioned it. Thank you so much for your advice. I really do appreciate it. Thanks again.0 -
lots to learnBelle82 said:Thank you for all the info
I really appreciate it. I don't feel so lost on what to do next. When the nurse from the first gyn/onc called today, she plainly told me the only "battle plan" the doc had was doing the PET scan (done) and the surgical exam. I don't understand why if they know it's in the nodes, they waited three weeks or better to call to set up the exam. I know cervical cancer is slow "moving", but I can't get past the feeling that if it's in the nodes, it's worse than they thought. The oncologist she saw yesterday (for an IV of Iron) made it sound like stage one or two, and I read something today and made it sound like if it's in the nodes it's stage three. He actually didn't call it a tumor yesterday, but a little leision. Every other doctor has called it a tumor. The GYN that told her it is cancer actually said, "her entire cervix is a tumor and her vagina is almost full of the tumor" that sounds like a higher stage right there. He said he didn't have to do a biopsy because the tumor was so large he could get "enough" just by doing a PAP.
I won't lie. I hadn't even heard of a tumor board until you mentioned it. Thank you so much for your advice. I really do appreciate it. Thanks again.
Hi Belle 82.
I am sorry this has been such a struggle for you & your mom. The waiting and wondering is indeed one of the hardest things, especially when you are having such a difficult time getting information.
My husband has had a recurring cancer for over a decade. We have had many different doctors, and have a lot of faith in the current ones. One thing we did was to be very proactive, even seeking out specialists across the country. Don't be afraid to be a pest to your medical offices. Keep a notebook by the phone and jot down the names, contact info, times, dates, & content of your phone calls. Ask for specific call-back time frames, and don't hesitate to call them back if they don't return your phone calls.
HeartofSoul gave a lot of good information. Another good source of information we found is ACORS at: http://www.acor.org/. This is where we got the first really useful information about my husband's specific cancer, and you should find a lot of info there for your situation. It is a forum for all different cancers, the posts are by survivors and patients about their treatments and options.
And by all means jot down any question or thought that comes to your mind, and bring that list of questions with you. Don't let the doctors rush you through the appointments, get the answers you need. One thing to cover up front with your mom though: How much information does she really want? If the bold truth is her thing, tell that to the doctors up front so that you won't get a lot of empty reassurances. If she copes better being told that everything will be fine after a little treatment, then that should be the approach you take. Placebo effect does have some substance to it. You can always ask the doctors to talk to you separately for more detailed information.
I would also recommend (not to get to depressing or scary) going over a medical directive with your mom. Things happen, and you will feel better in the long term knowing you are proceeding with treatment in the way your mother wants to proceed.
Best of luck. And try not to stress the unknowns (I know that is hard to do).0
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