The other day I had an appointment for a semi annual follow up for uterine cancer surgery. My doctor, John Boggess, M.D.,walked into the exam room and happily announced,”Do you know what today is? It’s the five year anniversary of your surgery! You are being released! No more follow ups.”, and he high fived me. My risk of recurrence is practically 0% and I can now lay this particular cancer to bed because I am N.E.D.! I did a sort of celebratory Cupid Shuffle with the nurse as I walked to Check Out.
Five years ago I had a total hysterectomy removing a cancerous uterus plus the ovaries, fallopian tubes and the cervix. I was fortunate in that my cancer was not aggressive (stage 1a, grade 1) and it was caught early resulting in no further treatment other than the surgical removal. My body was bleeding heavily and irregularly and a new pain deep in my groin were the only symptoms. Dr. John Boggess, who appears in a video below, was and is my doctor. He’s also the lead singer in a band of six gynecological oncologists called No Evidence of Disease (or N.E.D.).
The first embedded video has a primary mission to educate women about the warning signs of gynecological cancers. You know, “those” cancers down there below the belt in a part of the body no one really likes to talk about.
Get those Pap smears, ladies!
My surgery was done with the Da Vinci surgery robot at the University of North Carolina Hospital. I highly recommend it! Fastest recovery time ever!
Oh, and did I mention my doctor is a rock star?
February is Gynecological Cancer Awareness Month on Ehell!
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Thank you admin! This is a must watch. My best friend was 25 and it took ok 3 doctors before one took her seriously and tested for cancer. you’re never too young
I was kind of hoping this week’s video would be a performance by Dr. Rockstar and his band. Would that be a possibility for a future Feel Good Friday?
This is the trailer for the documentary: https://youtu.be/SDSxmak6Iu4
Lots more videos on Youtube: https://youtu.be/BkgQZ24bL78 and https://youtu.be/OjSXsLngUng
Thank you very much for posting this, admin. I lost my mother due to a stroke brought on by one of “those” cancers last year. She, too, had had a total hysterectomy four years prior due to cancer. So I would add, MAKE SURE anyone in this situation nails their follow-ups. When it recurred last year, her only symptom was a little occasional bleeding until a day came when there was lots of bleeding and we knew something was wrong. She was admitted to the hospital because they wanted to run some tests that were more surgical in nature, and also because they wanted to keep an eye on her. Cancer is a risk factor for stroke, it turns out, and she had several other risk factors. While in the hospital, she suffered a large stroke and, a few days later, a brain stem herniation, which is, as her doctor said, “not compatible with living.” All in less than two weeks.
A seemingly minor incident surrounding this will haunt me forever, though. She was supposed to go once a year for a follow-up with the gynecological oncologist. It was scheduled for that fall, but he had to reschedule her appointment. When the day came, she had a blinding migraine and cancelled. This was all before she was going south for the winter, and she left without ever seeing him. If she had, would she still be here?
I don’t know, but get your follow-ups. And if little things go wrong, don’t blow them off. Get a doctor to tell you it’s nothing.
First Rule of Medical Good Sense: No one has ever died of embarrassment; neither will you. Go for your mammogram at age forty, pap smear and for a colonoscopy when you reach that age of fifty.
I know it can be painful for a short period and the preparation for a colonoscopy is not fun. Neither is dying of cancer. Take the tests.
I was going for my first colonoscopy when I turned fifty. My assistant principal was older than I (I had taught two of her sons) and I suggested that we go together for moral support. She had never heard of the test and, when I explained it to her, she said it was too invasive, she would be too embarrassed, and it did not mean one would die of colon cancer if one skipped having the test. We had quite an argument over it. She had had three children by natural childbirth-what’s left to be embarrassed about after that?
I turned out to have a large polyp, which was removed and biopsied . It was not cancerous, but would have become colon cancer by the age I am now.
My AP died one year and five days after our argument. She had a stroke and died after her doctor told her she had advanced colon cancer which had spread into her liver and pancreas. She had become so ill that her doctor and her husband had made her have the colonoscopy; it was too late to help her.
Mammograms at 40 are excessive without a family history of cancer.
http://www.webmd.com/breast-cancer/features/new-mammogram-screening-guidelines-faq
It was not considered so twenty-five years ago when I was forty. We were encouraged to have a base-line done for comparison as we aged. I can recall seeing commercials some years ago that said women with no family history seemed to have more cases of cancer of the breasts. I never checked to see if that was correct or not.
My AP did not have a family history of colon cancer or she might have been more open to the colonoscopy. I don’t trust history to give me answers for the present in any case. I will go when my time comes, but I am not going to force my way to the head of the line yelling, “Me first!”
As an adopted child, I had no family history of any kind. Neither was I going to take a chance.
Did somebody explain to her that you are under sedation during the procedure?
Yes, I did-several times. She did not care.
She did tell me that, when she was finally forced to have it, the doctor told her that he had given her far more than the usual dosage as she was so nervous that she could not relax and sleep. As it was, the cancer was so advanced that they could not complete the procedure.
I had my first mammogram at 35, I was at risk. My OB/GYN set me an appointment and I was expecting them to do it that day. Totally blew him away as he was used to talking women INTO having one, I said I know I’m high risk, I though the stuff was here in the clinic and it was being done today. I still get paps even though they pulled plumbing 24 years ago (I was 31).
Today I’m praying for a slightly older friend. She ceased menses four years ago and 10 days ago she started spotting. She goes in this afternoon about it. I hope things will be good for her.
She has a huge polyp, they took a chunk for biopsy, and she’ll know by Friday what it is. She is post menopause so they are considering a hysterectomy when they go after the polyp. I’m doing support tonight… praying everything is benign.
Update, her tests came back benign and they scheduled her for outpatient to remove it and check a few other things. I will be going there for a week to support her and help out.
I would love to but every time I go to my GYN she has pushed back the interval for Pap smears, from every year, to every other year, to once every three years, not sure what it is now.
My doctors have done the same thing; it’s because my test results have always turned out perfectly. I am going to need more tests at some point, of course (just to be on the safe side), but so far, there aren’t any risk factors to worry about. If your results keep showing no cause for worry, that could be why.
That’s because of new recommendations from, I think, the College of Obstetrics and Gynecology. It’s every 3-5 years now depending on what the results of your last PAP were.
It’s an insurance and medical recommendation that women under the age of 40 or so get the PAP routinely every 3 years. I hate that long interval, so much can change in 3 years.
Actually, they found that more people were suffering consequences from excessive testing than were being saved by it. The problem comes not from money but from false positives, which lead to unnecesary treatment or injuries due to biopsy often enough that when making recommendations like that, doctors need to be thinking about that. If more people are being injured by false positives than would be saved, is it really the right way to go? That isn’t always an easy question to answer, but the bottom line is that “just screen for everything” is not actually the panacea it sounds like.
That said, watch the video, and pay attention to those warning signs, because the official advice only applies *if there are no other warning signs*. If you have a change in your menstrual cycles or abnormal bleeding, that “pap every 3-5 years” no longer applies and you should get it checked out right away.
I love N.E.D.! So cool that you have him as your doctor.
My doc wasn’t quite as cool but still saved my life.. I also had low-grade endometrial cancer, treated with surgery. Just passed my 8 year hysterversary (doesn’t sound like something to celebrate but it is!)
I’m glad you are doing so well. Just wait until your 3-month appointments become 6-month.. then one year.. then.. “5 years.. NED!”
My 3-month appointments got scheduled to ever six months starting yesterday!
Thanks, Admin. I’m dealing with some issues “down there” and, while my GYN still hasn’t worked out the cause, it’s nice to feel part of a caring community.
Change your ob/gyn if necessary. I went through 4 ob/gyns before being referred to Boggess.
It’s fFunny you should say that. My Ob/gyn referred me to another doctor, who I’ll meet with Monday. 🙂
Also, please get your daughters the HPV shot, if I’d have known of it, I wouldn’t be in the position I’m in now due to my ex. Having the type of HPV that never goes away, the one that may lead to cervical cancer, I now schedule a PAP for every year. I go in to see the doctor whenever anything is off, because I don’t know what can trigger it. For instance, I was under a huge amount of stress, and my HPV triggered some minor cellular abnormalities. I think women need start early, and not have any embarrassment of going to the OBG/YN, and that they need to request for the vital services they need. If one doctor doesn’t listen, request a different doctor, on the spot, and keep requesting until someone listens.
Daughters AND sons! It has now been approved for both boys and girls 🙂
They started testing men, and perhaps half the male population is a carrier for genital warts! GET THE SHOT no matter if you are male or female, and they are currently saying up to age 26, Get The Shot.
The HPV vaccine does not prevent cervical cancer. There are many strains of HPV and the vaccines prevent only a couple of them; thus it is possible that it MAY lower the risk of contracting cervical cancer, but not to any great extent. Most people never get infected with all the strains and some people never get infected with any, even the “harmless” ones, and those that do usually rid themselves of a virus within a couple of years of infection. There are many ways to prevent getting the virus, such as abstaining from sex, knowing your partner’s sexual history well before having sex, using barrier protection, etc. There are risks to all medical procedures, including vaccines, and the HPV vaccines are no different. So getting that vaccine is not a black-and-white issue, and I discouraged my sons from looking into getting the vaccine for themselves. I would have done likewise if I had a daughter.
Barrier protection does not help in this case. Abstinence really is the only guaranteed way. HPV is not detectable in men. For the women, at least IME, insurance only covers one test every five years. The overwhelming majority of adults either have it, or had it at one point or another, and there is really no way to find out, because they don’t know it themselves if they have or do not have it, or if they did before. You are correct that it does clear on its own within a year or two. Still, I’d feel safer if I were vaccinated against high-risk strains. My son had done his research before I did, and asked for the vaccine himself when he was still a teenager, and I am glad he did. Wish it had been available when I was younger myself, I am too old for it now.
In a related vein, get your kids vaccinated for HPV to prevent a significant percent of these cancers.
In the UK, only women aged 25 and over are invited for smear tests, and then only every three years.
I speak from experience:
If you are under 25 or are between smears and are experiencing pain, bloating, bleeding, discharge, or ANYTHING out of the ordinary that you are worried about, PLEASE go and see your GP and PLEASE insist on a smear test. Do not be fobbed off that’s it’s growing pains, or irritable bowel, or your periods settling down, or anything else. Trust your instincts. It might save your life.
So much agreement with this.
I had surgery to remove pre-cancerous cervical cells at 23; luckily they listened to me, caught it early and I’m now 10 years clear. Do NOT be fobbed off – you know your own body!
I hope you are now well Green123
I am, thank you Peekaboo, and sounds like you are too! We’re both lucky people!
My mother was diagnosed and had a total hysterectomy as well, with no symptoms except irregular bleeding. I have PCOS; one doctor totally dismissed all my symptoms for over a year, it was months after I left that doctor that I finally got a diagnosis. I have at least one aunt and 4 cousins who also have PCOS, and that’s just the ones I know of. Also a cousin who had cancer and a total hysterectomy at age 28, one who went through menopause between ages 30-32, two with endometriosis, and one with an “incompetent cervix.” And for every one of us, it took more than one doctor and a lot of convincing to get a diagnosis, because we were all young. Please ladies, do not allow doctors to dismiss your symptoms! You know your body best. And gentlemen, don’t be ashamed to urge the important women in your life to get regular tests and see their doctors regularly to discuss body changes. Admin, hooray for you and your recovery, and thank you for addressing this issue! You doctor rocks – literally and figuratively 🙂
Oh, and how could I have forgotten? My 21 year old niece was found to have precancerous cells on her cervix, discovered during a routine pap smear.
I’m due my first smear test (turning 25 is the age to start in the UK) so I’m calling my doctor Monday. Thanks for the reminder.
I get a pap smear and a uterine biopsy annually, as I have fibroids and am now doing HRT. He does an internal ultrasound twice a year.
Ovarian cancer scares me, I hear often about how it’s silent until the later stages.
A lot of commentators have pointed out that you shouldn’t let doctors fob you off due to your age; I would like to add, don’t let them fob you off because you are fat. Too many so-called experts blame a wide raft of things on fatness and unfortunately the result is that many of us fat ladies receive bad medical advice. You are worthy of respect and treatment *for the issue you have presented with*.
Ps where I live the advice is to begin having regular smears once you become sexually active. As I tell my daughters, if you are ‘old enough’ for sex, you are ‘old enough’ to deal with embarassment.
I second this!
I bled non stop for 5 years. My doctor’s advice was “Lose 100lbs and it will probably stop”. She also refused to do a pap on me in those 5 years because she said she couldn’t do a pap while I was bleeding (which I later found out to be complete bs).
Since she didn’t appear worried about it at all, I assumed it was really inconvenient but nothing to worry about.
After 5 years without a pap, I called around to find a Gyn who’d be willing to do a pap while I was bleeding. I got in with an excellent doctor. She discovered by iron count was less than half what it should have been. She did the pap – everything was fine. And she diagnosed my PCOS. She put me on Depo which stopped the bleeding and I’ve been much better ever since.
So do not let them push you off with a simple “it’s because you are fat” diagnosis.
Make sure they check for everything else as well.
Do not stop until you get an answer and a treatment. I always bled heavily, then I started to bleed for six months at a time, about 2nd day heavy. I ate and tried to stay ahead of anemia. I would ovulate and keep bleeding. Stop for 3-4 days and start again. They did an exploratory (surgery) and did not find endometriosis. They tried giving me progesterisone to stop things and it just messed me up bad (and I kept bleeding). I had an endometrial ablation a year later. It didn’t work. By third cycle I went back into continual bleed (and shed tissue, I always was shedding). Third pass at this they did a full hysterectomy. My subthreshold pain was so high from this that my blood pressure (diastolic or the lower one) dropped 15 points after surgery. When I had the hysterectomy my OB/GYN (also a surgeon) told me I should have had that done eight years earlier. Moral: KEEP TRYING. This was my fifth doctor over those eight years and I had him for almost four at the time of surgery.
Women’s health concerns are so often brushed aside. We still live in the benighted times of “Pain is part of being a woman,” when NO, this is not true. If something feels/looks/smells/ different, painful, problematic, ask about it. Ask until you get a good, solid answer. You have to be your own advocate. Don’t be afraid to request a second opinion, or more information about treatments, or to make follow-up appointments if you are still not satisfied. (This month is Endometriosis awareness month, so this is a timely reminder. Thanks, admin!)
I’m very glad you caught it, Admin. We’d be lost without you.
Glad to hear you are doing so well, Admin. Great video and great information presented. In the spirit of helping to “spread the word” I’d like to draw attention to something they left out, which is other genetic predispositions. They mention BRCA1&2, but say nothing of the Lynch Syndrome family of mutations. More commonly known as “hereditary nonpolyposis colorectal cancer” it’s been discovered that while colon cancer is one of the most common of the Lynch cancers, there are so many others (and more and more being linked everyday), including gynecological cancers, which is why there is a push to leave the original name HNPCC behind. A parent with Lynch has a 50% chance of passing it on to their children. Those with one of the Lynch gene mutations have a 65% chance of getting gynecological cancer and 85% risk of colon cancer over their lifetime (risk levels vary for other Lynch associated cancers). It’s a nasty mutation.
The mutation was discovered in my family when my 31 year old sister was diagnosed with uterine cancer (thank goodness her doctor decided to start with, “let’s rule out the big things” first and she was diagnosed early). A total hysterectomy, a second round of cancer 2 years later, plus chemo and radiation, and she’s doing ok. In the meantime, another sister has now also had uterine cancer, and has also had a total hysterectomy, chemo and radiation (after sister #1’s recurrence, they decided to not just stop at surgery for sister #2). My mom also has the gene, as well as at least 4 members of my extended family (many family members have opted not to be tested so we don’t know exactly how pervasive it is within the family). Other than one aunt who had uterine/ovarian cancer post-menopause, the only cancer that had continually shown up in the family was colon. Prior to my sister no one would have ever thought a connection between the colon cancer and gynecological cancers, but there it is.
For them, life is now constant vigilance. They will be screened more frequently (and for those who have the mutation, but have not had cancer they will start at much earlier ages) than the general population because their risk is that much higher, not only for recurrence of the cancers they have already had, but for other cancers in the Lynch family.
All indications show that it is a very much undiagnosed mutation, and many doctors have never heard of it. It’s estimated that only 5% of all Lynch carriers have been identified. I think a lot of times doctors don’t make connections between what appear to be “unrelated” cancers because cancer is so prolific in the general population. They’ve recently linked breast cancer as well, so those who test negative for BRCA may very well have Lynch.
If cancers run in your family (particularly colon), collect family history and push for testing (a person with an actual cancer diagnosis would have to be the first person tested). Don’t let doctors assume they are unrelated because they are uninformed. The knowledge and the early screenings if you are a carrier might just save your life.
Sorry to hear about your illness. Glad you are OK! It is my fondest wish that one day no one will have to go through what you have. I am glad to hear that your treatment was successful! I wish you a long and happy life! (I am an 11 year breast cancer survivor.)
Speaking from the UK, we get sent a letter to tell us to make an appointment with our GP for a pap smear at 25. and we’re trying to push the age down to 18. I’ve been for mine. it was nothing! I’m trying to get all my friends to book their’s as a lot of them are scared, but there’s nothing to be scared about!
The HPV vaccine is now being done in year 8 ( 12-13) for girls in schools now. (thankful for the NHS)
and our sex ed covers these things too. I remember being told at 15 that if something changed about my body and I didn’t feel right the go to my GP. it’s what they are there for!
My mother’s numerous (and now classic) ovarian cancer symptoms were aggressively treated as bowel issues by at least five different doctors. Finally, diagnosis. Quickly followed by death. My advice to everyone is to know your body, read and learn, and act up when you gotta.
I see this is a repost but a needed repost!
As I typed elsewhere. Do Not Give UP. Ever. If something doesn’t seem right, keep trying. The OB/GYN that helped me through and got me what I needed, my first few appointments were ‘what a DOOFUS’ and I couldn’t believe he was a doctor. As we started to work together, I found him to be highly competent and willing to fight my insurance for what I needed. Those three years involved three surgeries and cost the insurance over $30k and they didn’t want to authorize any of it, but he got it through for me. I am forever in his debt. (he retired on me…) It’s your life and your health. Never give up if things aren’t right. Ever.
I would love to be able to get a pap smear, but unfortunately for all the times I have tried to have it, I have not been able to complete it.
TMI in case
I have vaginismus and I’ve been in complete and utter pain every time I’ve tried to have a pap done. Honestly I wish I could be put under for it but the doctors keep refusing. No sexual activity for me so far but you never know. But because of my condition I can’t have it done. Always freaks me out when people start talking about any of the cancers down there that could be spotted by a pap and I can’t have one.
Look into botox injections in there. I have heard that some vaginismus sufferers have found much relief and ‘relax’ down there as well with the injections. The case that comes to mind, she had tried everything else and was trying to use dialators and all it was was pain. She found a pair of doctors willing to work together (OB/GYN and plastic surgeon that did botox injections) and said the relief was almost immediate and a dialator that had given her pain was now no problem.
One of my granddaughters was 16 when her symptoms prompted her to a gyn. She had a tumor the size of a newborn baby’s head removed from one ovary with the ovary and tube removed as well. Her diagnosis; endometriosis. So it’s never too young to be aware of symptoms.
For the majority of the 7 years we were trying to conceive Little Man, I would spot midcycle. My doctor chalked it up to anxiety of trying to conceive. I was super-vigilant about getting my PAP (I started VERY late- 30- I wanted to get one when I was 16, but my mother wouldn’t permit me to go to a female physician and our male family physician made me very unprofessional comments about my body. And my mom had it drilled into my head that anytime you went to a doctor, for whatever reason, you got a pelvic exam and a PAP, and that the way our doctor did things was completely normal. So I avoided medical care for like 14 years. Side note: I feel bad that she was basically abused by him. My issue turned out to be anxiety, plus a small fibroid that got diagnosed with my first ultrasound with Little Man. And, since having Little Man, no more spotting between cycles. Ever. And don’t let fear stop you. Or mistreatment- ask your friends what’s normal to expect during an exam, ask for recommendations for a good doctor (that’s how I found mine- from friends who also had bad experiences) and go get checked out.
Thank you for posting (and reposting), Admin. This has become a personal issue for me lately.
I had the Gardasil HPV vaccination in my early 20s and was under the impression that I was protected from all types of HPV. Luckily, I still kept up my regular Pap smears. I say luckily because last year my Pap smear came back with a possible low grade abnormality, and I was asked to come back in a year’s time for a repeat Pap smear and HPV test.
I found out a month ago that I do have HPV, and that the vaccine does not protect against all strains of the virus. My Pap smear had also progressed to a high grade abnormality, and a colposcopy revealed precancerous lesions. I am waiting for treatment of these lesions at the moment, which will likely involve burning them off.
As a woman in my very late 20s who is yet to have children, the idea of anything affecting my fertility or causing cervical cancer is very scary. I am very lucky that I kept up to date with my Pap smears, as my gynaecologist said if I had waited another 6 months to a year, the abnormalities would almost certainly have progressed to cancer. Yes, the whole process can be gross and uncomfortable, but DO NOT put it off.
I am so happy for you Admin! Thanks for the update.
As a Catholic, I must say this — thanks be to God! (Incidentally, St. Peregrine is the patron saint of cancer patients, may he continue to interecede for you, your loved ones, and all others who are facing cancer and cancer treatments.)
Congratulations on this amazing milestone!!! And thank you for continuing to advocate for women’s health!!
Jeanne, this is my favourite Feel Good Friday ever. I’m so glad you’re healthy again. 🙂
Dr Boggess rocks!
Congrats!!!
Fantastic news! Congrats!
Congratulations, EHell Dame. 🙂
Congratulations on your excellent news!! What a happy anniversary.
Congratulations, admin! I’m so pleased you’re doing well.
Jeanne, this is wonderful news! Hitting the five-year mark with no recurrence is an occasion for celebration!