Aa
response to "borderline ladies"
Darn if I can figure out where to post this as I was trying to post to "borderline ladies."
Thank you to everyone that posted. I have enjoyed the read a great deal...okay, "enjoy" might not be the correct term as none of us wants to have to read this stuff and surely would prefer not having to deal with this. I know that many of you posted over a year ago but I felt it was important to add my two cents to this post for others in this situation.
I have MPSC, transformed from borderline which I don't believe is really a diagnosis worth two spits to be honest. We are a bit weird in case you haven't figured it out on your own yet.....I knew I was weird but come on!...haha.
This stinks really and I wish I had something a bit more researched and manageable. It is what it is. What I wanted to impress upon everyone is the need to keep in mind that we are all different, unique, individual in our diagnosis, treatment, and response. It is wonderful to connect with others in similar situation but just because "Sally" responded this way doesn't mean that "Suzie" will respond the same. Hopefully you have noticed this from all the posts.
My story for what it's worth. I was diagnosed with serous borderline in 2007. I have had two recurrences and now I am low grade invasive micro-papillary serous carcinoma. I still can't quite figure out what that means and I am a researcher...haha. Okay, my research is in the area of education but the read is the same and I still can't figure this out. There is ZIPPO out there and we all know it. This is what you read......it is potentially not managed well with chemo, it is managed with chemo, it is fatal, it isn't fatal....ARGHHHHH. Yeah, great fun is had by all that tries to wrap their heads around this. Frankly, I wish I had breast cancer so they knew what the heck they were doing and a breast reduction wouldn't hurt me any...haha. AND....I have a GREAT team of doctors that know what they are doing but this stuff is a crap shoot, plain and simple until a WHOLE LOT more is done in the way of research.
Last summer (2009) I did eighteen weeks of carbo/taxol.....my numbers went back to normal...all was clear. Three months later I had MPSC. Yes, they had all the slides from 2007 and afterwards. I had a hysterectomy at the onset but I also have peritoneal implants though they are not invasive....maybe....yep, not much help am I? Four surgeries later I am doing Doxil/Carbo for six months and then maybe radiation because one tumor could not be fully removed due to it's placement around blood vessels to the lymph nodes. Anyway, I am strong and happy so life is fine but I am scared and I don't have a clue what this will end up to be after all is said and done.
Like everyone, my only question is will I die? I believe this is the elephant in the middle of the room and she is BIG and VERY PINK!!!! If you read the ONE article that is from MD Anderson concerning life expectancy the average length of survival is 87.1 months. Again, people...this is a statistic and as one that teaches stats....that could mean just about anything and almost nothing depending on your situation and diagnosis, progression, treatment, and of course the luck of the Irish!
I agree with so many things being discussed on this forum. Be proactive but don't expect miracles. If you don't like your doctor/s, fire their butts and do it toot-sweet, I did and I had one of the best in the country...he was about as helpful and friendly as a Sherman tank. This is your life, your body, and your choice! I have a female doctor and frankly....what the heck does a man know about hot flashes and the life of a female other than we look nice and occasionally we are friendly if you don't make us mad....haha.
I am one of those severe hot flash people that spends my days blow drying my hair in between classes and wakes up three times a night to ring out my pillow! Frankly, I don't care if my cancer is estrogen receptive because this is not quality of life, it is miserable. Again...ladies....these are ALL personal choices. Be your own advocate and don't let others talk you into anything that you aren't comfortable with. Be the BOSS! My doctor doesn't believe my cancer is estrogen receptive but to be honest.....I didn't even think about a test until I read these posts....thank you all for your responses. I will check it out but again....I am NOT going to continue this way and I am going on estrogen again. I stopped taking the estrogen when I too read about this potentially being receptive but I prefer to have quality of life over quantity, that is my choice and certainly isn't a recommendation at all.
You guys rock and I hope more will respond and start this discussion again. Thanks again to all the wonderful posts.
pstur1 (Kelley)
This discussion is related to Calling all "Borderline" ladies.
Thank you to everyone that posted. I have enjoyed the read a great deal...okay, "enjoy" might not be the correct term as none of us wants to have to read this stuff and surely would prefer not having to deal with this. I know that many of you posted over a year ago but I felt it was important to add my two cents to this post for others in this situation.
I have MPSC, transformed from borderline which I don't believe is really a diagnosis worth two spits to be honest. We are a bit weird in case you haven't figured it out on your own yet.....I knew I was weird but come on!...haha.
This stinks really and I wish I had something a bit more researched and manageable. It is what it is. What I wanted to impress upon everyone is the need to keep in mind that we are all different, unique, individual in our diagnosis, treatment, and response. It is wonderful to connect with others in similar situation but just because "Sally" responded this way doesn't mean that "Suzie" will respond the same. Hopefully you have noticed this from all the posts.
My story for what it's worth. I was diagnosed with serous borderline in 2007. I have had two recurrences and now I am low grade invasive micro-papillary serous carcinoma. I still can't quite figure out what that means and I am a researcher...haha. Okay, my research is in the area of education but the read is the same and I still can't figure this out. There is ZIPPO out there and we all know it. This is what you read......it is potentially not managed well with chemo, it is managed with chemo, it is fatal, it isn't fatal....ARGHHHHH. Yeah, great fun is had by all that tries to wrap their heads around this. Frankly, I wish I had breast cancer so they knew what the heck they were doing and a breast reduction wouldn't hurt me any...haha. AND....I have a GREAT team of doctors that know what they are doing but this stuff is a crap shoot, plain and simple until a WHOLE LOT more is done in the way of research.
Last summer (2009) I did eighteen weeks of carbo/taxol.....my numbers went back to normal...all was clear. Three months later I had MPSC. Yes, they had all the slides from 2007 and afterwards. I had a hysterectomy at the onset but I also have peritoneal implants though they are not invasive....maybe....yep, not much help am I? Four surgeries later I am doing Doxil/Carbo for six months and then maybe radiation because one tumor could not be fully removed due to it's placement around blood vessels to the lymph nodes. Anyway, I am strong and happy so life is fine but I am scared and I don't have a clue what this will end up to be after all is said and done.
Like everyone, my only question is will I die? I believe this is the elephant in the middle of the room and she is BIG and VERY PINK!!!! If you read the ONE article that is from MD Anderson concerning life expectancy the average length of survival is 87.1 months. Again, people...this is a statistic and as one that teaches stats....that could mean just about anything and almost nothing depending on your situation and diagnosis, progression, treatment, and of course the luck of the Irish!
I agree with so many things being discussed on this forum. Be proactive but don't expect miracles. If you don't like your doctor/s, fire their butts and do it toot-sweet, I did and I had one of the best in the country...he was about as helpful and friendly as a Sherman tank. This is your life, your body, and your choice! I have a female doctor and frankly....what the heck does a man know about hot flashes and the life of a female other than we look nice and occasionally we are friendly if you don't make us mad....haha.
I am one of those severe hot flash people that spends my days blow drying my hair in between classes and wakes up three times a night to ring out my pillow! Frankly, I don't care if my cancer is estrogen receptive because this is not quality of life, it is miserable. Again...ladies....these are ALL personal choices. Be your own advocate and don't let others talk you into anything that you aren't comfortable with. Be the BOSS! My doctor doesn't believe my cancer is estrogen receptive but to be honest.....I didn't even think about a test until I read these posts....thank you all for your responses. I will check it out but again....I am NOT going to continue this way and I am going on estrogen again. I stopped taking the estrogen when I too read about this potentially being receptive but I prefer to have quality of life over quantity, that is my choice and certainly isn't a recommendation at all.
You guys rock and I hope more will respond and start this discussion again. Thanks again to all the wonderful posts.
pstur1 (Kelley)
This discussion is related to Calling all "Borderline" ladies.
A related discussion, serous papillary tumor borderline malignancy reccurance was started.
Hello Claire
You just had quite a bit of an ordeal and it will take a while to get your comfort back and so forth. I am a pretty fast healer but mostly I just refuse to deal with it so I say to myself..."self, you are fine, get up and move on"...sometimes that is easier said than done as you know. Your body may even take a year to fully recoop, that is what I was told. And in some ways it was true. My last surgery was in March and I am still feeling things here and there at times.
My biggest frustration is the lack of energy. I am usually a force all to my own and now I start a project and in about 10 minutes I need a break. I can't stand that part, it drive me batty in fact. As long as I am in air conditioning I am okay but once I hit the heat and humidity I am pretty useless.
Keep me posted.
You just had quite a bit of an ordeal and it will take a while to get your comfort back and so forth. I am a pretty fast healer but mostly I just refuse to deal with it so I say to myself..."self, you are fine, get up and move on"...sometimes that is easier said than done as you know. Your body may even take a year to fully recoop, that is what I was told. And in some ways it was true. My last surgery was in March and I am still feeling things here and there at times.
My biggest frustration is the lack of energy. I am usually a force all to my own and now I start a project and in about 10 minutes I need a break. I can't stand that part, it drive me batty in fact. As long as I am in air conditioning I am okay but once I hit the heat and humidity I am pretty useless.
Keep me posted.
Thanks Kelley, I did think the does was low but I spoke to my GP yesterday, was seeing her for a different matter, and she looked up the dose and says it was OK for me- grrhhh- who knows? I think the dose on the patch is lower though as more is absorbed it's not going through stomach and liver. I don't have hot flushes however, but the last 2 nights have slept really badly as I am just so hot and have werid vivid dreams. I see my consultant in 4 weeks and hope he will help me.
Hope you continue to have relief from your HRT- amazing it works so quickly.
Claire
Hope you continue to have relief from your HRT- amazing it works so quickly.
Claire
Okay, that is what I thought, you are getting 40 micrograms which is 0.04 milligrams. I take 2.0 milligrams so I am getting a considerable amount more than you are. Ask if they can increase that if you need more comfort. You aren't even getting 1/2 of a milligram. My doctor didn't take me off of them, I took me off of them when I heard it was potentially estrogen receptive, that tumors that is. My doctor tried to convince me to take them for comfort but I was a little concerned I would be hurting myself...now I don't really care but it turns out after talking to her that my tumors were tested and I am fine. I would never have known this had I not read these posts on here. Thank you ladies, one and all. My life is almost back to normal now that I am not ringing wet 24/7.
I am so terribly sorry to hear about your loss. Love those girls! You have been having a similar frustration as I. I hope this slows down very soon for you. Hang tough, you sound (or read rather) like you are tough gal....good. You are handling this well from my perspective.
So, do ask if they will increase your HTR for comfort.
I am so terribly sorry to hear about your loss. Love those girls! You have been having a similar frustration as I. I hope this slows down very soon for you. Hang tough, you sound (or read rather) like you are tough gal....good. You are handling this well from my perspective.
So, do ask if they will increase your HTR for comfort.
It says it delivers 40 micrograms of estradiol a day- it's a patch so I guess dosage is different? Yey that you didn't have wet hair! Why did they say you couldn't have HRT before?
I hope the moodiness will improve and the crying- I lost a baby at 23 weeks in March because of the tumor and then had 2 major surgeries in the space of a few months so it's all taken it's toll unfortunately. It's horrible to lose a baby then be rendered infertile although I do have 2 precious girls who make it all OK.
I hope the moodiness will improve and the crying- I lost a baby at 23 weeks in March because of the tumor and then had 2 major surgeries in the space of a few months so it's all taken it's toll unfortunately. It's horrible to lose a baby then be rendered infertile although I do have 2 precious girls who make it all OK.
Heff, are you sure it isn't 45mmg and not 45 mg? 45mmg would be less than half a mg so they could increase you dosage if that is the case. Check again that is a lot! I am back on 2mg a day and I took the first one yesterday and this morning I did NOT have wet hair! Double check on that. If you are crying at the drop of a hat you should check on anti-depressants. I was on Effexor which is also known to help with hot flashes but it didn't. I am now on Cymbalta as I too can cry at the drop of a hat and I am not an emotional person.
My menopause was brought on by my hysterectomy also and yes, it causes or can cause much more severe reactions.
I love the UK, I visit the UK every year during the summer. If I stop by will you adopt me so I can have your medical plan?.....hahaha.
My menopause was brought on by my hysterectomy also and yes, it causes or can cause much more severe reactions.
I love the UK, I visit the UK every year during the summer. If I stop by will you adopt me so I can have your medical plan?.....hahaha.
At least you still have your sense of humor Kelley! Good to "meet" you Debbie and I'm happy to hear you are free of re-occurances.
My research on this whole "borderline" thing is the same as your Kelley, that they are gradually getting rid of the classification in favour of more specific ones. The John Hopkins website seems to say by tumor if properly classified it by it's nature benign. I also have a problem of high grade abnormal cells in my cervix (also glandular and mucous producing) which the first hospital says is unrelated but I got a second opinion which says it could be related and are running tests. Either way i have had a TAH already so hope I have given myself the best chance.
I am in the UK and we don't have the same "hirng and firing" capacity with doctors as you guys, we can request a second opinion to whatever hospital or doctor in the country however which I did and say a top professor in London who was great (plus it's all free).
I wonder if my HRT dose is to low? It says it gives 45 mg estrogen a day? Is it true you need more with a surgical menopause and under 35? It would seem to make sense and I am still very irritable and weepy plus no energy.
Good luck to you all x
My research on this whole "borderline" thing is the same as your Kelley, that they are gradually getting rid of the classification in favour of more specific ones. The John Hopkins website seems to say by tumor if properly classified it by it's nature benign. I also have a problem of high grade abnormal cells in my cervix (also glandular and mucous producing) which the first hospital says is unrelated but I got a second opinion which says it could be related and are running tests. Either way i have had a TAH already so hope I have given myself the best chance.
I am in the UK and we don't have the same "hirng and firing" capacity with doctors as you guys, we can request a second opinion to whatever hospital or doctor in the country however which I did and say a top professor in London who was great (plus it's all free).
I wonder if my HRT dose is to low? It says it gives 45 mg estrogen a day? Is it true you need more with a surgical menopause and under 35? It would seem to make sense and I am still very irritable and weepy plus no energy.
Good luck to you all x
So very nice to meet you Debbie. We have basically the same background in education and experience. I too taught for several years and ended up teaching college math. I switched to math ed when I realized the need was greater in that area and I am a strong advocate of best teaching practices so that is where I am now. I am still working on my doctorate as my job requires it but this too shall happen in time. Again, so nice to connect with you.
You asked a great question of me. Yes, all the slides were gone over again and compared. This was the same question we all had including my new doc. It was a transformation and the slides were clearly different. Tissue was also sent to a lab in California to be tested as to which chemo would respond better. Thank you for asking that because it is a very important thing to look into I think.
I will keep my fingers crossed for you because I don't want you to have any more problems and with luck you won't. You have been clean for a while, that is GREAT! And spot on firing your first people...right on. I really wish more people would be aggressive with themselves....this is, as you and I both said....OUR BODIES! There is nothing worst than to be dismissed by a doctor. It sends me into an orbit to the nth degree!
For instance, you take a car or some item in to be fixed and you tell them to check such and such because that is what you PAY them to do. If you ask a doctor they assume, some not all I need to be fair, you are too stupid to know better. I know my body darn it! If I pay someone to check my body engine...I pay them to check it not tell me I am an idiot and dismiss me. I have a great doctor now and I feel very confident.
To add a bit of comedy to my story...I did start hormone replacement today and the pharmacist laughed at me because the minute she handed me the bottle of pills I downed one like a drug addict seeking a fix! All is well with the world again and everyone can come out now, I am not a danger to anyone anymore....hahahaha.
Take care Debbie
You asked a great question of me. Yes, all the slides were gone over again and compared. This was the same question we all had including my new doc. It was a transformation and the slides were clearly different. Tissue was also sent to a lab in California to be tested as to which chemo would respond better. Thank you for asking that because it is a very important thing to look into I think.
I will keep my fingers crossed for you because I don't want you to have any more problems and with luck you won't. You have been clean for a while, that is GREAT! And spot on firing your first people...right on. I really wish more people would be aggressive with themselves....this is, as you and I both said....OUR BODIES! There is nothing worst than to be dismissed by a doctor. It sends me into an orbit to the nth degree!
For instance, you take a car or some item in to be fixed and you tell them to check such and such because that is what you PAY them to do. If you ask a doctor they assume, some not all I need to be fair, you are too stupid to know better. I know my body darn it! If I pay someone to check my body engine...I pay them to check it not tell me I am an idiot and dismiss me. I have a great doctor now and I feel very confident.
To add a bit of comedy to my story...I did start hormone replacement today and the pharmacist laughed at me because the minute she handed me the bottle of pills I downed one like a drug addict seeking a fix! All is well with the world again and everyone can come out now, I am not a danger to anyone anymore....hahahaha.
Take care Debbie
Hi Kelley! I'm also in the Education sector too. I was a high school Math teacher then moved on to teach at a local college. Now, I work in the office and part of my job is too do all the stats for the college and I love that! I have an Educ degree with a major in Math, but have been thinking about finishing my Math degree and adding Comp Science to it. Anyway...just thought it was interesting we have similar interests.
When I was diagnosed with borderline ovca in 2002 I found these boards and there was only one or two other posters that had borderline or even new what it was. Now, there has definitely been an increase in this. I actually read a local article in the newspaper regarding the increase in Ovarian cancer in general, especially in younger women. I'm currently 42. I've had no reoccurances (knock on wood) and hope to keep it that way. I'm much more aware of my body. I, like you, KNEW something was wrong. My PCP and my gyn brushed me off as being too anxious and worried and the first gyn told me right off "Don't worry you don't have cancer". I high-tailed it outta there and demanded my PCP refer me to another doctor ASAP. But I just KNEW it was something more serious. It's funny how we just know. But what's important is that women are informed, are prepared to be assertive with their doctor, ask for tests (frozen section bioposy, second opinion on pathology, referals to specialists for their specific type of cancer) and most important to ask questions and keep asking until you understand. If the doctor gets annoyed with you - too bad, it's your body and you must be informed in order to assist the doctor in making decisions about your medical treatment. All right, off my soap box...lol.
Kelley, any chance your first pathology was incorrect diagnosis and you've had MPSC all along? Did you ever go back and ask for a second opinion on the first pathology? Just wondering.
Good luck with your treatments.
Debbie
When I was diagnosed with borderline ovca in 2002 I found these boards and there was only one or two other posters that had borderline or even new what it was. Now, there has definitely been an increase in this. I actually read a local article in the newspaper regarding the increase in Ovarian cancer in general, especially in younger women. I'm currently 42. I've had no reoccurances (knock on wood) and hope to keep it that way. I'm much more aware of my body. I, like you, KNEW something was wrong. My PCP and my gyn brushed me off as being too anxious and worried and the first gyn told me right off "Don't worry you don't have cancer". I high-tailed it outta there and demanded my PCP refer me to another doctor ASAP. But I just KNEW it was something more serious. It's funny how we just know. But what's important is that women are informed, are prepared to be assertive with their doctor, ask for tests (frozen section bioposy, second opinion on pathology, referals to specialists for their specific type of cancer) and most important to ask questions and keep asking until you understand. If the doctor gets annoyed with you - too bad, it's your body and you must be informed in order to assist the doctor in making decisions about your medical treatment. All right, off my soap box...lol.
Kelley, any chance your first pathology was incorrect diagnosis and you've had MPSC all along? Did you ever go back and ask for a second opinion on the first pathology? Just wondering.
Good luck with your treatments.
Debbie
I forgot to answer your question...no, I did not have a rupture. All of my tumors were in tact and removed with exception of the one that was entangled in the blood vessels to the lymph node. That is my concern at this time. I might have to do radiation after this chemo. By the way....here is a nice piece of advise to those that are doing chemo. DUH....take your nausea meds on time and I mean on time. I was having issues until I realized that I wasn't taking my nausea meds on time...DUH! Chemo brain!....haha
Kelley
Kelley
Hello and super greetings!
MPSC is micro-papillary serous carcinoma of the ovaries. It is what they call well differentiated which is simply another term for low grade. There are two types....low grade and high grade. High grade is also called poorly differentiated....silly medical terms that take 20,000 hours to look up....haha. My doctor asked me not to do research but she didn't realize at the time that I am a researcher. While I am not a medical doctor I am a math education instructor and I teach undergrad and grad stats, I do understand the lingo and numbers so I also understand that you have to, and I mean HAVE TO take the literature with a grain of salt and be careful of what you read and most importantly what you interpret. It is easy to get very very confused and also to read something that really isn't being said. Frustrating yes but the truth is that research articles really aren't intended for anyone other than other doctors and medical journals. We mere mortals aren't supposed to understand....hahaha. Well, it's true! Few have the guts to say it but these articles were NEVER written for patients. That is why they make no sense and say things you will never figure out unless you go back to school for years and trust me...you don't want to....BORING!
It is my understanding and again...I am NOT a medical doctor but my take is that prior to "recent" research "borderline ovarian" was used for a variety of conditions like ours and now they are finally starting to narrow it down and make more wise choices in their names. If you are truly borderline, my understanding is that it is very possible you will not have to deal with this again as many have surgery and poof....never deal with it. Some of the ladies were questioning the pop-up of cases but since we are all struggling to get a handle on it...of course we seem plenty in numbers but we are the ones writing on these boards so we really are few in number.
Let me see if I can give you a little stats lesson. Borderline makes up for about 10 to 20 percent of ovarian cases depending on what you read. It is claimed that 98% of women with borderline will not experience further complication or transformation. The left over 2% will experience recurrence but recurrence does not necessarily mean a transformation to carcinoma; that is reserved for us 0.07% who transform so please don't panic, you may never have another issue with this and then again you might...a crap shoot really. The waiting is the worst. With me, I haven't had the luxury of a break as I have had one thing after another since this ordeal started but I feel so fortunate that mine was caught via a fluke to be honest. These numbers are just that, numbers, based on what limited experience there is with this. I say limited because in the scheme of things this is fairly unresearched based on length of studies and quanitity of participants. I love my doctor as she said to me....Kelley you have weird S#$t....hahaha. I prefer that term to be honest....haha.
Low grade comes with different diagnosis as well. There are several types but mine is MPSC. I don't know what the other varieties really mean as I have not read on those because, of course I am focused on my type. Also, keep in mind that I have floaters in my peritoneum which can be invasive and non-invasive. So far they say mine are non-invasive which is much relief as invasive peritoneal implants are basically a death sentence for sure. I am just an honest person and don't mince words...I say it like it is because I am also a teacher and I know how people need the basic facts and in language that can be understood. Good luck finding doctors that can do that. I think they all need about two years of education courses to get a grip on how to talk to patients but that is another conversation for another time and I could rant for hours on that...I digress!
My first doctor in St. Louis at Barnes Jewish Hospital was WORTHLESS but I cannot say that for the others in his office just him and his horrid staff. He basically dismissed me as my "borderline" tumors seemed not to be crucial enough for him to give a care. So I fired him and thankful that I did. If I didn't think I would get into trouble I would give you his name because NO ONE should go there! I wouldn't go back to Barnes hospital if the world was on fire and they were the only ones with care! They stink and having a Sasquatch take care of you would be a better choice! Yes, I hope someone from Barnes reads this because you owe me about 20 apologies!!!! Sorry, I digress again.
When I was first diagnosed with the borderline I only had the hysterectomy and no other treatment as it is not considered necessary for borderline to have recurrence. I did recur so I did chemo but remember, at that time it was still borderline and NOT carcinoma. It transformed in three months after my treatments. We were so sure I was done that my port was removed...I knew better, I knew better. Always listen to your instincts...I am always sorry when I don't. However I prefer the port on the left side so all is good. Hey, at least I have symmetric scaring so I look better in a bikini....hahaha...just kidding about the bikini!
If there is anything else I can help you with please don't hesitate to ask. We need each other because unfortunately we cannot count on the medical community. I do not say this with venom or anger, they are just not good at talking to patients and giving the scoop as it should be. In their defense....read some of the posts and you will see a bunch off panicky women and that is part of the reason doctors don't give you the full scoop. Keep a level head and don't panic ever...it does NO GOOD! Panic, anger, fear...all feelings that only get your grief and do not fix anything. Plus, these feelings add stress and we don't need stress as we need to relax and muddle through. It is what it is.
Thank you so much for the suggestion on the book...I have already ordered it. I called my doctor a few minutes before I responded to you so I could get back on hormone replacement. I didn't know that menopause could be so miserable. I have a high constitution for pain and discomfort but this is insane and I will be in a padded room drooling if I don't get some relief soon. The only place I don't have hot flashes and constant sweat and shivering is in the pool. I don't suppose my student would be willing to take all of my classes at the YMCA in the pool do you?....hahahaha.
Take care and big hugs back to you!
Kelley
MPSC is micro-papillary serous carcinoma of the ovaries. It is what they call well differentiated which is simply another term for low grade. There are two types....low grade and high grade. High grade is also called poorly differentiated....silly medical terms that take 20,000 hours to look up....haha. My doctor asked me not to do research but she didn't realize at the time that I am a researcher. While I am not a medical doctor I am a math education instructor and I teach undergrad and grad stats, I do understand the lingo and numbers so I also understand that you have to, and I mean HAVE TO take the literature with a grain of salt and be careful of what you read and most importantly what you interpret. It is easy to get very very confused and also to read something that really isn't being said. Frustrating yes but the truth is that research articles really aren't intended for anyone other than other doctors and medical journals. We mere mortals aren't supposed to understand....hahaha. Well, it's true! Few have the guts to say it but these articles were NEVER written for patients. That is why they make no sense and say things you will never figure out unless you go back to school for years and trust me...you don't want to....BORING!
It is my understanding and again...I am NOT a medical doctor but my take is that prior to "recent" research "borderline ovarian" was used for a variety of conditions like ours and now they are finally starting to narrow it down and make more wise choices in their names. If you are truly borderline, my understanding is that it is very possible you will not have to deal with this again as many have surgery and poof....never deal with it. Some of the ladies were questioning the pop-up of cases but since we are all struggling to get a handle on it...of course we seem plenty in numbers but we are the ones writing on these boards so we really are few in number.
Let me see if I can give you a little stats lesson. Borderline makes up for about 10 to 20 percent of ovarian cases depending on what you read. It is claimed that 98% of women with borderline will not experience further complication or transformation. The left over 2% will experience recurrence but recurrence does not necessarily mean a transformation to carcinoma; that is reserved for us 0.07% who transform so please don't panic, you may never have another issue with this and then again you might...a crap shoot really. The waiting is the worst. With me, I haven't had the luxury of a break as I have had one thing after another since this ordeal started but I feel so fortunate that mine was caught via a fluke to be honest. These numbers are just that, numbers, based on what limited experience there is with this. I say limited because in the scheme of things this is fairly unresearched based on length of studies and quanitity of participants. I love my doctor as she said to me....Kelley you have weird S#$t....hahaha. I prefer that term to be honest....haha.
Low grade comes with different diagnosis as well. There are several types but mine is MPSC. I don't know what the other varieties really mean as I have not read on those because, of course I am focused on my type. Also, keep in mind that I have floaters in my peritoneum which can be invasive and non-invasive. So far they say mine are non-invasive which is much relief as invasive peritoneal implants are basically a death sentence for sure. I am just an honest person and don't mince words...I say it like it is because I am also a teacher and I know how people need the basic facts and in language that can be understood. Good luck finding doctors that can do that. I think they all need about two years of education courses to get a grip on how to talk to patients but that is another conversation for another time and I could rant for hours on that...I digress!
My first doctor in St. Louis at Barnes Jewish Hospital was WORTHLESS but I cannot say that for the others in his office just him and his horrid staff. He basically dismissed me as my "borderline" tumors seemed not to be crucial enough for him to give a care. So I fired him and thankful that I did. If I didn't think I would get into trouble I would give you his name because NO ONE should go there! I wouldn't go back to Barnes hospital if the world was on fire and they were the only ones with care! They stink and having a Sasquatch take care of you would be a better choice! Yes, I hope someone from Barnes reads this because you owe me about 20 apologies!!!! Sorry, I digress again.
When I was first diagnosed with the borderline I only had the hysterectomy and no other treatment as it is not considered necessary for borderline to have recurrence. I did recur so I did chemo but remember, at that time it was still borderline and NOT carcinoma. It transformed in three months after my treatments. We were so sure I was done that my port was removed...I knew better, I knew better. Always listen to your instincts...I am always sorry when I don't. However I prefer the port on the left side so all is good. Hey, at least I have symmetric scaring so I look better in a bikini....hahaha...just kidding about the bikini!
If there is anything else I can help you with please don't hesitate to ask. We need each other because unfortunately we cannot count on the medical community. I do not say this with venom or anger, they are just not good at talking to patients and giving the scoop as it should be. In their defense....read some of the posts and you will see a bunch off panicky women and that is part of the reason doctors don't give you the full scoop. Keep a level head and don't panic ever...it does NO GOOD! Panic, anger, fear...all feelings that only get your grief and do not fix anything. Plus, these feelings add stress and we don't need stress as we need to relax and muddle through. It is what it is.
Thank you so much for the suggestion on the book...I have already ordered it. I called my doctor a few minutes before I responded to you so I could get back on hormone replacement. I didn't know that menopause could be so miserable. I have a high constitution for pain and discomfort but this is insane and I will be in a padded room drooling if I don't get some relief soon. The only place I don't have hot flashes and constant sweat and shivering is in the pool. I don't suppose my student would be willing to take all of my classes at the YMCA in the pool do you?....hahahaha.
Take care and big hugs back to you!
Kelley
Hi! I am one of the "borderline" ladies. what is MPSC please? and how old are you if you don't mind?
Sorry to hear of your re-occurances- did your orginal rupture and where were the re-occurances? My mucinous tumor ruptured prior to surgery and I had TAH two weeks ago (no ovaries now). I am on a estrogen patch already and feeling ok. I brought a book called "The premature menopause book" by Kathryn Petras it's really helpful. Did you read it?
I am really not sure what to expect with me now and what sort of monitoring I need. It's rubbish isn't it? All doctors are no help at all with this HRT stuff (particularly the men I have to say!).
Big cyber hugs to you x
Sorry to hear of your re-occurances- did your orginal rupture and where were the re-occurances? My mucinous tumor ruptured prior to surgery and I had TAH two weeks ago (no ovaries now). I am on a estrogen patch already and feeling ok. I brought a book called "The premature menopause book" by Kathryn Petras it's really helpful. Did you read it?
I am really not sure what to expect with me now and what sort of monitoring I need. It's rubbish isn't it? All doctors are no help at all with this HRT stuff (particularly the men I have to say!).
Big cyber hugs to you x
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