Rachél Payne designed this class with those of us who may need that extra little nudge to do self-care. She is one of my dearest friends who is also a survivor of Endometrial cancer and wants to extend this giveaway to 3 Teal Sisters. If this is something you would enjoy, we want to encourage you to enter here:
This conversation has come up several times in the last couple of months for me. If the general medical population thinks that once a lady has had a full hysterectomy that they can not get Ovarian Cancer, then we need to get the word out so that our friends can be proactive about this misconception. A friend shared this with me and I sharing with you.
Here is how it's possible to get ovarian cancer even after having your ovaries removed.
Total hysterectomy with salpingo-oophorectomy procedure removes your cervix and uterus as well as both ovaries and fallopian tubes.
This makes ovarian cancer less likely to occur, but it does not remove all risk.
You still have a small risk of what's called primary peritoneal cancer, cancer which develops in the thin layer of tissue that lines the abdomen, uterus, bladder and rectum
The cancer may result from ovarian cells that migrated to the peritoneal area (a thin layer of tissue that lines the abdomen) during each menstrual cycle before your ovaries were removed.
These cells can become cancerous later on.
Alternatively, since the peritoneum and ovaries arise from the same tissues during when an embryo develops, it's possible that cancer could arise from the cells of the lining of the abdominal cavity.
Source: Mayo Clinic
I am sharing this with all of you to bring awareness that even women who have had a full hysterectomy can still get Ovarian Cancer. So when you Dr says there is no reason to do a pap and/or do a CA125, demand it for your peace of mind if you are experiencing any of the signs.
This is my story ... I was diagnosed in June of 2015 My primary dr was treating me for upper respiratory problems and thought I had reflux since January I had a bad cough , couldn't keep food down , loosing weight etc the beginning of June I went to the ER and had a CT scan they found a malignant tumor the size of an orange and my diagnosis " ovarian cancer Say what? I had a total hysterectomy in 2006 how is this possible?? A friend who just went through colon cancer told me to get a referral to Roswell Cancer Center in Buffalo, NY ( 3 hours from me) I got in that week they took all kinds of tumor marker blood tests and everything was negative except for perintoneal ( which symptoms are like ovarian) To make a long story short I had 4 chemo treatments , surgery( tumor shrunk significantly ) and 4 more treatments afterwards carboplantin snd taxol My ca 125 went from 700 something to 24 in February of 2016 I have blood tests every three months and was normal range for sixteen months thus past June my.ca 125 was 135 in march it was 2 ... so another Ct scan showed a small area on my liver drs recommended to go. Back on the chemo I had for six treatments I go every three weeks for five hours after the first tx My ca 125 was 74 blood work was drawn before my second tx down to 39 had my third tx today snd will get results in a few days we know what treats my cancer and I am glad I'm being followed every three months is there anyone out there that has experienced the same thing? My only advice to women is not to only have PAP smears that's what my gyn recommended after I had the hysterectomy ( I did have precancerous cells but supposedly it was confined to the uterus ) my surgeon asked me why I had Pap smears cause there is "nothing there". Duh boy did I feel foolish so if I can let women know who had a similar experience demand a ca 125 blood test the test itself can show high markers and nothing wrong but in my case it's a pretty good indicator ... I'm learning more about my body now and learning how to ask questions .. stay positive Have Faith and let others help God Bless
As Adults we wonder why children ask so many questions and wonder why this and why that. I guess the child in me came out this week.
Life is good and yet days later I am still trying to figure out why the tears flowed uncontrollably. Yes, I have been in physical pain but I have learned to deal with that. Nothing obvious came to mind or a single event to set the waterworks off.
The subconscious apparently was working overtime on some issues, but what are they?
Is my body trying to get me to pay attention to something a little more complex than just day to day issues?
Am I concerned what the results will be from the upcoming scan?
Not sure, but I don't think so. I have not pushed when there has been a few obstacles to get the scan scheduled. Do I just want to keep status quo of no news is good news?
I am thinking this maybe the case... I have so enjoyed this spring tending to the gardens and enjoying fresh air and the breezes. Trying to get a new normal established to my life.
It has been described as scanxiety. It's not a emotion I want to revisit in the future.
Hopefully by addressing this event and giving it a name publicly it will not seem so scary in the future.
I know there are hundreds if not thousands of women who love Mark Harmon and N C I S. I just wanted to share that the episode named M.I.A. that aired back in March dealt with a soldier who had stage 4 OC. It was easier on me to watch than it was for my husband. He did get up more times than normal during this episode, and I am very proud that he did watch it with me. But for me it was serendipity and synchronicity at it's best.
My family and friends know that watching N C I S is like therapy for me, so even this episode served as therapy.
They did a very tasteful true to life episode and touched on several areas that most family members want to avoid if all possible.
The Perspectives that were shown from how a father felt, to Torres who shares how he lost his high-school sweetheart to cancer. From having no hope to being given hope of new research only to find out she was not a candidate for the trials.
It better helped me see how others dealt with the topic of ovarian cancer as well as someone who was playing the role of an ovarian cancer patient.
While it is only an hour long it was enough and gave me the opportunity to discuss some of those points with my husband without having to bring them up just out of the blue.
I am not a doom and gloom kinda person, so I was glad I watched it. It actually gave me the opportunity to think of things a bit differently and even have a few revelations for myself.
I would encourage you to try to watch it if at all possible. There are many of us who can related to her journey.
While I would like to think I still have some OCD tendencies in me, truth be known they have fallen along the wayside this past year. Coming to grips with lower expect ions of myself is much harder than I realized.
I have always enjoyed having a nice yard. Yard work for-filled many of my joys and it was/is a type of therapy of sorts... Grounding with the dirt and plants and observing nature and the wildlife that went along with it.
Yard work is very physically demanding anytime. Mowing and weed-eating and lets not forget several hundred pounds of oak tree leaves that need to be raked up too several times a year also.
Last spring I was too sick to do yard work, and all though the year it was something I was looking forward to and being a goal of sorts- being able to do this year in the spring. This year is here and Spring officially starts today and I don't have the energy to get out there and do the hard work, but it's not because I don't want to... I found out I have lost some strength to lift that heavy yard furniture.
This weekend I even played motivational music early Saturday Morning, to get me pumped up and get after it... Nope not to be... a bench that I wanted to move.. Not happening. BBQ pit on wheels was a challenge.. So I stopped while I was ahead. Much longer I would have caused a injury to myself or broke something.
I have a whole new understanding of the frustrations that people have when getting older and weaker even though they see themselves still as 25-40 year olds.
When I called it quits and went inside... low-and-behold there was a NCIS -Mark Harmon marathon on... and oh how quickly my mood changed... There is magic in their shows. They make me laugh and cry, sometimes at the same time and I always feel better.
What a roller coaster of events this past year has been for for my family and friends. Since the first day of scans There is not a day that goes by that I don't thank God and the universe for each and everyone of you and the roles you held in keeping me on track and staying focused on the forward journey to better days.
Everyone of us have good and bad days and I am no different. Your struggles and pains maybe different but they are just as real and valid. So know it means the world to me that you take time to keep me in your thoughts and prayers.
Often, life changing events can make one re-prioritize what is important to them and how they choose to spend their time. It can become tunnel vision. We want to make sure that certain things are taken care of in case our time is cut short or too sick to deal with them. We don't want our loved ones to ever ever doubt our love for them by leaving things undone.
We often hear someone say that their cancer turned out to be a blessing in their life? I still don't quite feel that way, and I am not sure that I could ever say that. However, I can see that my life has been enriched greatly by the lessons and experiences I have had as a result of cancer.
I have met many people that I would have probably never met, had it not been for cancer... but these ladies and her husbands are not strangers any longer.
Having heart to hearts with Doctors and discussing and making changes to protocols for this disease has been very rewarding for me.
While the blog has been good therapy for me, it turns out it seems to be helping others know they are not alone when asking questions at 3:15 in the morning because their mind is racing or they can't sleep. Sharing the lessons learned and giving of yourself while in the midst of ones own tribulations has been amazing and rewarding.
After observing, listening, and reading so many other cancer patients number one issue this past year, I can tell you that the gift of really listening to us and talking about our fears/concerns is huge... The ones that seem to fade away so quickly are the ones that don't feel like they can share their real thoughts and burdens with others.
Let me say that when I asked the doctor what the surgery entailed I got the standard, we won't know till we get in there, but the ovaries, and tubes for sure, and we may have to remove some of your colon or other parts of organs, etc.
I was just grateful that a highly reommended doctor will even consider doing the surgery after being turned down by a couple of others.
I doubt that many of us even think about what equipment will be used or the dangers of that equipment.. I for sure had not idea nor did I even care at that point.
Here it is almost a year from the date that I was given the basic - looks like ovarian carcinmona. In the past two weeks time the topic of Morcellators shows up on my radar 3 times.. Ok Universe what do you want me to do about it.
I have no idea if one was used in my surgery and it doesn't /wouldn't change how greatful I am to have had the surgery. I would hope that since they suspected cancer prior to the sugery it would not have been used??????
Like my friend Denni who sent me this article and the articles' author Melissa Young, I too will pay it forward and share it with other women that may have to have a procedure done with this machine... to be better educated about it.
There may not be much we can do about the use of it, but at least we have the information and can ask if other options are available for the procedures.
The FDA has known for almost three decades that medical devices used to make hysterectomies and uterine fibroid removal easier could end up killing patients.
That's what was discovered in a just-released GAO report about these devices, called power morcellators.
Along with that, the study detailed how hospitals dropped the ball when it came to sending the agency a simple report -- one required by the FDA
-- that could have saved untold numbers of lives.
While it would be bad enough just to review the failures of this so-called "watchdog agency," what makes the report even harder to stomach is that these devices are still in use.
In spite of all the frightening things that have come to light over the past couple years, the FDA has yet to take them off the market.
And that means you or someone you love might still be in jeopardy of becoming the next victim.
Eyes wide shut
Despite the fact that power morcellators have been in use since 1991, it took a husband-and-wife team of doctors to sound the alarm about morcellators three years ago.
Surgeons told patients they would make operations easier and shorten hospital stays. But here's what else they can do: spread a hidden cancer throughout a woman's body by chopping up or shredding fibroids or the uterus itself.
That's what happened to Dr. Amy Reed, an anesthesiologist at Beth Israel hospital in Boston. She had fibroid tumors and her doctor sold her on the idea of simply chopping them up using morcellation surgery. Then, the tissue could be extracted through a tiny incision.
But Dr. Reed also had a cancer, the kind that is almost never discovered until being surgically removed.
And after the morcellation procedure, Dr. Reed found herself practically battling stage 4 cancer overnight. That's when she and her husband, Dr. Hooman Noorchashm, went to work so that every woman out there would know about the risk of power morcellators.
Of course, the big question is: why didn't the FDA get involved sooner? And how did these devices ever get approved in the first place?
According to the new GAO study, the FDA knew full well that if a woman had a hidden cancer, sending it flying around her body with a morcellator would put her life at risk. And it has known that since 1991!
But, the FDA said, the danger was considered "low," and put the issue on the back burner, since no adverse-event reports were ever sent in.
Soon after Dr. Reed's personal account was publicized, however, hundreds of adverse-event reports came flooding into the FDA. By September of last year, there were close to 300, with more arriving all the time.
Hospital heads contacted by Medscape said they didn't think it was necessary to report what was happening -- women who blithely went in for "simple" surgery and came out with a deadly cancer diagnosis -- because the devices were not defective. They were working exactly as they were designed to.
But that's not all.
Because power morcellators wouldn't have been on the market to begin with if not for the most absurd, lax and industry-friendly FDA approval process there is, called 510(k).
That's how medical devices are approved by the agency. And it isn't much -- in fact, safety trials are not required. All a company needs to do is show that what they want to put out is "substantially the same" as something else already approved.
For power morcellators, that was a "similar" device used in orthopedic surgery, not hysterectomies! But the FDA bought it hook, line and sinker, and the first morcellator hit the market 26 years ago.
After that, it was an even easier piece of cake to get another power morcellator on the shelf...and another...and another. All in all, 25 types of morcellation devices were "approved" by the FDA, putting millions of women in danger.
And when all is said and done, the only change made is the requirement that the boxes these devices now come in have a warning, and doctors and patients are "encouraged" to report any problems to them.
Well, thanks for nothing, FDA.
Because morcellation procedures are just as potentially deadly as they've ever been.
And it's up to us to tell that to every woman we know.
To Knowing the Risks,
Humor is optional, but will help greatly reading this post.
Below is just my basic experience with some of the Acronyms.
OC (Ovarian Cancer)
Right off the bat at the doctors appointments we are hearing letters and not knowing what they are or mean. Several times I was told
to check the
OMD (Online Medical Dictionary)
My last chemo finished up Sept 2016. I then wait not so patiently for three months just to here these three little letters
NED (No Evidence of Disease).
Not meant to be for this round of Chemo ... for there is lesion on the upper dome of my liver. It was decided that we will wait another month, and I am to return in January. My CA125 Marker only went up a few points and the Doctor suggests that we take a Lets Wait And See Approach until April. So I decided I would make my own acronym for this and it comes out (LWASA). If you say it out loud, it kinda sounds French don't you think?
Here is where my humor goes a little further south as some may say.
If one is not NED or has a re-occurrence, we are sometimes labelled " Chronic" - love the meaning of this word. A long duration, frequent occurrences. This is the new term to replace
Terminal and /or are not in remission.
When we start researching and discussing about additional treatments, here is where I flat out get my feathers ruffled.
These treatments are referred to as 2nd Line therapies, which I understand the term and it's usage.. I'm ok with this but as we start digging a little deeper some doctors and literature refer to the treatments as-
" Salvage Therapy" - recycling of waste material.
All of this makes one all warm and fuzzy inside doesn't it.
I thought I was the only one feeling a bit overwhelmed at times with all of this jargon, but no.
Here are 2 sites all about Medical Acronyms
Cancer Acronyms for beginners
This one doesn't even have Ovarian Cancer listed, isn't that sweet.
another article I found online.
post in NY Times by Susan Gubar
This post is dedicated to all the wonderful souls that have and continue to help us navigate our way through cancer.
I have come in contact with many women that have spent Hundreds if not thousands of hours learning, researching, sharing, and living as a test subject in trials in hopes of advancing treatments to eradicate such horrible suffering caused by Ovarian Cancer.
One of the first words of wisdom that come from doctors and nurses is " everyone is different" and as patients we are also told to " do not go Googling for information". They say it will scare you... As if the disease is not enough to scare us?
Once diagnosed with a life threatening disease, a feeling of powerlessness overcomes us. The need to understand often starts out with just trying to figure out what is going on with our bodies.
However, often times, when you try to ask your medical team, the answer comes back " everyone is different". FRUSTRATION sets in, and off we go to consult Dr. Google.
We get that there might be some mis-information out in the WORLD WIDE WEB (affectionately known as the WWW). But at 3 am when you can't sleep, there is a part of our core that wants us to be connected and not be so "Unique as to be a freak of nature".
So we innocently start searching for information and options so we can make sense of all that is happening to us. Usually the first set of questions we ask Dr. Google is anatomy and pictures.
Then the realities of how to find the information slaps us in the face, Thus the learning begins -- we have to know enough to know 'how to ask Dr. Google the questions" then to only get " did you mean ????" . Well then you question yourself do I know what I am really asking etc. Then you start clicking on a link and now you are sucked in and feel challenged to find the information you are really looking for.
In my case "what is ovarian cancer" comes back with 2620 possible articles related to ovarian cancer... of course there are 100's of entries that use key words that may lead you to think you have found the right page to go and read. Wrong- it's an ad for gene testing or hospitals, just about everything else but what you are really looking for.
Just ponder this for a moment- The National Cancer Institute has 8020 words related to cancer.
Once the reality hits that we are dealing with a stubborn cancer we can then add to the mixture, surgery, chemo, radiation and a crash course of learning as fast as we can to beat the clock back a little.
The associates degree that we are all hoping to receive is the
"No evidence of disease" or what is referred to as NED. This associates degree of sorts does not get handed out to all of us so the homework continues.
This Disease tends to reoccur with some regularity, so trying to be prepared and being proactive for that news is challenging, wondering if we will be an eligible candidate for trials and if so which one will give us the best chance for remission. Reading and research continues on all fronts.
Part of our homework usually includes interaction with forums. A wonderful source of information. When you listen to them, you would think you are reading a paid professional experts' opinions in in the field, only to find out it is someone who has experienced a setback and doing their homework and wants to share what they have learned in order to give us comfort and knowledge.
March 2016 starts the journey of what has been determined to be Ovarian Carcinoma