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Looking for LMP/Borderline OC members

NatalieCat's picture
NatalieCat
Posts: 5
Joined: Jan 2013

Hi,
I am new to this network and am looking to connect with others with similar situations, experiences and history. As I read through the posts under Roll Call, I didn't see any LMP/Borderline diagnosis listed, and feel uncertain whether to introduce myself there. I feel very blessed and fortunate my cancer turned out to be non-invasive and treatable via surgery and no chemo. From all my research and talking with my gyn/onc it seems there are mixed reviews whether LMP Tumors should be classified as cancer, borderline cancer, precancerous, or benign. I understand also it depends on the pathology testing of the cells and there are various levels within. My oncologist told my husband and me, my tumor was not benign, and if I had been 10 years older, there's a good chance I would have been late stage aggressive cancer. He explained to me the Low Malignant Potential Cancer is fortunately very slow growing and treatable through surgical removal with excellent Prognosis. He explained recurrence chances are low -about 5%, but will want to monitor things closely through ultrasounds and CA125 tests.

About me:
Age: 36
Location: Milwaukee, WI
General Health: Overall good, but about 40 lbs overweight. I try to eat well most of the time and am a regular walker/jogger - 3 miles, 3 times per week. Has a LEEP and Electrcauderization for cervical displaysia (precancerous cells) at age 19.
Symptoms that led me to see Dr : Bloating and gassy, severe diarrhea spells for 6-9 months
CA125 Pre-surgery: 105 (have not yet had a post-op test)
Diagnosis: Stage II Low Malignant Potential Tumor
Family History: Mom had Cervical cancer at 30 and uterin pollips. No info for fathers side.
My story:
Nov 6 I went to a new MD for a general physical, no gyno stuff. I shared what I suspected we're GI problems. the Dr ultimated did an exam of my lower abdomen, she originally though my uterus was enlarged. She set me up with a pelvic ultrasound on the 9th. I could see the tech concentrating on a specific area and taking lots if measurements, but assumed I might have had pollips worst case.
Fri, Nov 10 my doctor's office called me at work to inform me the Ultrasound showed a 14cm complex cyst on my ovary. The doctor contacted my ob gyn who in turn after review referred me to a gyn/oncologist. She also ordered a CA125 test.
My CA125 came back at 105, and I met with the gyn/onc the following Wed. He was great! Has a wonderful calm demeanor and allowed me all the time I needed. Becausevof the solid mass visible inthe ultrasound and my CA125, he put my cancer risk at 30%. His plan was to remove the cyst, ovary and tube via laparoscopy. He explained the laparotomy and staging process if he suspected cancer. I was confident with him when I left his office.
Surgery was Dec 6. Once my GO got in with the scope, he saw the concern and changed my surgery. He informed my husband and parents who were there so they would know the surgery would be longer, and staging would be done. He removed the tumor, right ovary and tube, omentum, 30 lymph nodes and pelvic tissue. I have a incision from about one inch above my naval down to the pubic bone plus 3 tiny incisions -one just below my left ribcage, one at each side above my hips. Final pathology showed the solid mass inthe tumor as borderline cancer, plus borderline cells in one of the pelvic tissue samples. All other test came back neg.
Forward plan: I see the GO on Jan 14. After that, I will see him every 3 months plus have a CA125 test and ultrasound. If good, will stretch to biannual tests, and of good from there to annual tests.

So, I'm 4 1/2 weeks post op and feeling more and more normal everyday. I have overdone it resulting in some setbacks, but doing well.

Going forward, I want to make serious changes to my lifestyle to prevent recurrence, and other health issues.

I also want to do everything I can to help bring awareness to ovarian and other gynecological cancers. I knew nothing about risks and symptoms before this experience, and feel strongly there needs to be more awareness.

I'm looking forward to learning more people's stories, and making friendships here.

lovesanimals's picture
lovesanimals
Posts: 1329
Joined: Sep 2011

Welcome to this board!  Thank you for sharing your journey with us.  I had not heard of Low Malignant Potential Cancer before now and was interested to read your story.  I'm so happy that your prognosis is excellent.  You're right that we need more awareness about ovarian and other gynecological cancers which have "whispering" symptoms.  I blab my personal story to anyone, male or female, who asks about my health.  My family, friends and co-workers know that my cancer is not a secret. 

My own journey has been somewhat different from yours.  Sudden excessive bloating got me into the doctor's office in September 2010 and after an abdominal ultrasound and CT scan and abdominal surgery in October 2010, I was diagnosed with  stage 2b ovarian cancer.  I had six sessions of carbo/taxol chemo between December 2010 and March 2011.  Prior to surgery, my CA 125 was over 2,800.  After surgery and before chemo, I was down to 7.  Since then, my CA 125 has dropped all the way to 3; my last number was at 7.  I've been NED (no evidence of disease) since October 2010.

The women on this board have been wonderful and many have suffered and endured much more than me.  I find great comfort here, knowing that everyone understands what I've gone through and the jumble of emotions that go along with a cancer diagnosis.

Take care,

Kelly

 

 

NatalieCat's picture
NatalieCat
Posts: 5
Joined: Jan 2013

Hi Kelly,

Thank you for you kind words and sharing your story! I'm very happy you are NED and pray your status does not change. Hopefully our quests to bring bring awareness help women to get early treatment and statistics will continue to improve. ;)

Take Care!
Shannon (my actual name - Natalie is my tabby cat)

khsherwood's picture
khsherwood
Posts: 33
Joined: Jan 2011

Hi Natalie, I have the same diagnosis as you do. I am doing very well. I was diagnosed in September of 2009. I  had my right ovary removed. It had just a little bit of cancer, LMP. My doctor took biopsies all over my abdomen. the surgery was done laparoscopically. I had a huge cyst on that ovary 7cm by 11cm. Luckily the cancer was caught so early that I am fine. MY left ovary had been removed a few years earlier. That ovary had "abnormal" cells, not full blown cancer. I was being watched carefully with vaginal ultrasounds every six months. That's how we found the new cyst on my right ovary.

The only problem I have is that my primary physician doesn't think I really had cancer. He is a cancer survivor himself. He had testicular cancer as a young man. I find that there is a snobbism among some survivors, if you didn't have chemo, then you really didn't have cancer.

I am also a breast cancer survivor. Same scenario. I had a lumpectomy, then a mastectomy (with reconstruction). The diagnosis was DCIS (Ductal Carcinoma In Situ). I did not need chemo then either. It was 14 years ago.

To me this is either stupidity or jealousy. I feel that I am very lucky that both times the cancer was found very early.

Have you encountered this problem?

Glad to have another one on this board who has LMP/Borderline Ovarian Cancer. Welcome, Kelly

NatalieCat's picture
NatalieCat
Posts: 5
Joined: Jan 2013

Thanks for sharing your story! Though not happy to hear what you have gone through, am happy to meet someone with similar situation. I'm very happy for you as well that in both situations it was detected early and addressed. I hope you continue to be healthy and cancer free going forward!

I have fortunately not yet encountered any of the attitude myself, but have seen a few women on other forums who have encountered similar situations from both primary physicians and other survivors. I think it is rather unfortunate. One women shared her gyn/onc told her her felt it was not cancer, but she tried to donate bone marrow after, and was denied die to her pathology report listing her LMP as cancer.

The entire experience has been incredibly emotional. The surgery is physically and mentally draining. The process of regular screenings from an oncologist for the next several years, and wondering after each one. We're certainly very fortunate to not have an aggressive form that requires chemo. I am thankful every day! I don't understand why others would want to dismiss it. I think like with many things on life, you'll find people who just have a need to "one up". I'll never understand why, as it typically results in negative attention.
On the positive side, while on an Ovarian Cancer Alliance site/forum. I read a woman's story about her LMP, and she received nothing but positive responses and support from other survivors. I was happy to see that. It helps those of us in this situation looking for support.

Anyway, thanks again! Look forward to meeting some more people and learning more about prevention and success stories ;)

E galaxy
Posts: 2
Joined: Jan 2013

I was diagnoised in 1987 with "pre-cancerous cell growth" in my abdomen along with endometriosis. I had a complete hysterectomy and apendectomy but no chemo. I assumed it was caught in time (I was young and dumb at the time - 24) and believed I was in the clear. It took over 25 years but I am now fighting a re-occurrance which mutated from "borderline" to low grade. Low grade is invasive but slow growing so chemo doesn't always take care of the tumors. Mine re-occurred in the lymph nodes but not in the pelvic region. I have three spots that have active disease. The spot that lead us to discover the re-occurance is near my super clavical in the neck. I had a lump that I could feel. I had 6 rounds of carbo-taxol which shrunk the invovled lymph nodes but did not eliminate the disease. I am now on a estrogen blocker and my disease is classified as "stable". So I still have it but it is not growing or shrinking. I can stay on the oral meds until there is evidence of disease advancement. If the disease does start to grow again I will have to move to a differecnt treatment. It is rare for borderline to re-occur, and even more unusual for it to mutate. Don't let your guard down no matter how many years out you are from your surgery because it can come back, and don't ever let a doctor tell you what you had is not cancer! It may not be an aggresive form but it is still cancer and can still come back, mutate, and cause problems later in your life. I don't want to scare you but just want to make sure you have the knowledge I have learned from my experience. I would have never known about this occurance had it not shown in a spot where I could feel the lump. I had not been feeling 100% for quite some time but the doctors were starting to think my problems were "in my head" or it was "depression". I had been feeling tired, worn down, achy, and irritable. I believe my body was fighting the disease and my vague symptoms were indicating something was going on. All my bloodwork came back fine - no red flags. My CA-125 was never over 20. So, you may never have another problem with this but just listen to your body. It will tell you, in very subtle ways, something is going on. Know your body and listen.

NatalieCat's picture
NatalieCat
Posts: 5
Joined: Jan 2013

Hi E galaxy,

Thanks so much for sharing your story. So sorry to hear of the mutation. Very glad you noticed it and it is under control. Hopefully that continues to be the case going forward.

Your story is most helpful as it is a good message to continue to be aware of our bodies and changes. I personally am now making conscious efforts to better document my health - thank goodness for phone apps that make it so much easier - for me anyway. I'm also incorporating new foods and spices into mine and my husbands diets to improve our health and hopefully try to help prevent future problems.

I'm hopeful the CA125 is a marker for me. I had my first post-op lab pulled yesterday so anxious to see where the numbers fall.

After reading some others' experienced, I had been concerned about whether to get a second opinion. I was reassured yesterday, as my gyn/onc informed me my slides are going to be reviewed at the end of the month by the organizations tumor review board. He explained both he and the pathologist who performed the original analysis are confident with the diagnosis. He explained I would only be contacted if the board had and additional concerns or conflicting analysis. It felt good to know others would be reviewing my case.

Again, thanks for sharing! Take Care!

sophiemom02
Posts: 1
Joined: Oct 2013

Hi Natalie,

 

After doing an exhaustive amount of research since my surgery in April this year, I was so happy to find your story and this board.

 

April 22nd 2013 I was at my mom's and she noticed that I seemed warm.. I had my husband take my temperature and even though he thought I didn't seem warm.. he went ahead and did and it was 102 degrees... So I thought I had the flu.. Flash forward the next 36 hours or so and the fever never really went down.. My husband works late nights and in the wee hours of the morning on 4/24, he injured himself at work and had to go  to our ER and since my fever was still sticking around, I decided to go get checked out.. Long story short.. after the blood and urine tests came back fine, the nurse on call started feeling my abdomen and noticed something off.. She sent me to have CT scans (contrast and w/o contrast) as well as ultrasounds.. Low and behold, they found something.. Originally they thought it was the size of a small ball.. In the end, it was bigger.

 

By the time I got home later that morning, I had been in the ER since 4am and was then shuffled to the oncall OBGYN who was able to have me scheduled for surgery on 4/30. I would later come to find out that this was a Borderline Malignant Mucinous growth that was 10lbs in size (honest story).. Once we determined the diagnosis, he sent me to an oncologist that he works with out of UC San Francisco who I saw on 5/21.. Due to an issue with the slides being sent from my local hospital to UCSF (many came down there shattered).. I spent the better part of a month until late June waiting for the confirmation of the Pathology. As it stands now they have me on the 5 yr plan as you'd call it.. the CA 125 and the CEA every 3 months (at least for the first two years).. as well as the physical exams. The Path stage on this was Staage 1a and it was a Grade 1 or well differentiated, which I've heard is good. What's driven me bonkers though, is the fact that neither the surgeon or the oncologist would want to call this anything remotely resembling a cancer.. even pre-cancerous. I have a regular customer where I work who had one of these when she was in her 40s (she's elderly now) and she said call it just that.. pre-cancerous.. I have my next follow-up with the Oncologist in November and will also be meeting with Genetic Counselors, which is something I've wanted to do since I have certain family history I would like to look at.. such as my father's Jewish ancestry on his biological father's side. I also found a great book at Barnes and Noble through John's Hopkins called "Confronting Hereditary Breast and Ovarian Cancer".. 

 

I hope things are well for you and if possible, would love to communicate with you as I can whole heartedly understand the desire to want to find someone, anyone for that matter.. who would be able to understand... 

 

Warmest regards,

Morgan

 

P.S. A little about me:

 

Age: 29 (28 at diagnosis)

No children (married since 2006). 

Graduate student at Walden University. 

bikurgurl
Posts: 8
Joined: Mar 2015

...I also have a strong family history, both maternal and paternal, of Ovarian and Breast cancer...I had no idea that they could be so closely related! I have so much to learn and will look up the book you've mentioned...

 

Thank you!

Meau28
Posts: 1
Joined: Feb 2014

Dear Fellow Traveler,

It was exactly two months ago today on 12/18/13 that I underwent surgery for an over 20 lb ( yes, you read right) LMP/borderline ovarian tumor. My story is very similar to a couple of the other contributors with a few exceptions.

I had been experiencing what I thought was either gall bladder disease or an ulcer for a number of months. My pelvic area was fine but I noticed that under my ribcage I felt very tight and very hard. I had terrible heartburn but no bloating as it was simply hard and "high up". In fact I had embarked on a very healthy diet and was losing weight. The problem was my waist was large but everything below was soft and starting to show weight lose. Why did I wait so long? I had no insurance, no primary care physician and was not in any pain - just some discomfort and not feeling right.  I finallty went to an urgent care the Monday before Thanksgiving and the doctor palpated a large mass in my pelvic/stomach area. He became extremely concerned and took blood work even charged me a smaller rate. Still it was money I didn't have. He told me to go the the major hospital in my area and get a CT scan. I tried but because it was a holiday week there was nobody who could help me in the financial office. I ended up in the ER the following Sunday where they did an ultrasound and said I had what looked to be a 13 lb  mass in my stomach and they admitted me. I met with the gyn/oncology surgeon the following day who was very matter of fact about it more than likely being a LMP/borderline non-spreading ovarian tumor and I was scheduled for surgery that Wednesday - until he heard I had no insurance.  By this time I was having difficulty taking deep breaths and feeling not well - still no pain. He told me to go to the county, said I couldn't afford that hospital and I was eating aand drinking so it wasn't an emergency. I was discharged.

Countless tests, doctors and procedures later I was scheduled at the county hospital on December 18 for surgery. By that time I was very ill because I wasn't eating ( still no pain but a lot of discomfort). I had everything but the kitchen sink taken including the appendix, was cut below my breast bone to my pubic bone, 50 staples closing the cut and lost almost 25 lbs before leaving the hospital. I, too, was told no chemo needed as they removed everything in one piece and the during surgery biopsy showed no lymph node involvement. My hair continues to fall out though.

I also had a double lumpectomy and partial mastectomy in 2009 for DCIS and was told again at that time I didn't need chemo/radiation. Because I don't have those war stories, I am sometimes made to feel not part of the "in" crowd. Silly isn't it. Now I wait to return in 3 months still not having a primary care physician so not having a point person to navigate for me. I was on Tamoxifen for 2 1/2 years but lost that with my job and insurance. I'm supposed to meet with an oncologist ( had one before) but at county you get whoever is on rotation.

I'm at about 90% now and back working ( temp job but grateful to have it) and still quite sore with an interesting 12 inch healing scar.

No one I tell has ever heard of this type of ovarian tumor but every doctor I saw and there were quite a few including the ER doctor called it what it was from the get go.

About me?

Will be 63 in 10 days

Have 2 grandchildren

and have a daughter who was diagnosed with Stage III invasive breast cancer when she was 22 weeks pregnant with my 18 month old granddaughter. She had 4 rounds of chemo, they then took the baby 7 weeks early, 3 weeks later she had a radical mastectomy with 10 lymph nodes removed followed by 3 months of Taxol followed by 39 radiation zaps all with basically a newborn and a 2 year old.

Genetic testing proved negative - just bad luck and bad genes.

I'll help anyone I can with questions if you have them.

 

 

 

 

 

 

  

NoTimeForCancer's picture
NoTimeForCancer
Posts: 746
Joined: Mar 2013

I have to say, this site is always an EDUCATION!  I am glad this site was the vehicle for you all to find eachother and educate some of us on an area we had no knowledge. 

bikurgurl
Posts: 8
Joined: Mar 2015

I am recovering from a full hysterectomy, et al, following diagnosis of serous borderline tumor which was removed in January. It's all happened so fast, having my 1 week post-op appointment yesterday, that I am just now emotionally processing it all. Not having much information or understanding of LMP Ovarian Cancer and now feeling thankful that I'm cancer-free .... thank you for posting your stories. I am just beginning my navigation and appreciate your honesty as your stories are so similar to mine.

 

<<my first post...but I wanted to thank you as I found this website by this thread on a web search for more information and I have many of the same feelings, concerns, and so many questions>>

Thank you!

 

bikurgurl
Posts: 8
Joined: Mar 2015

Sorry...attempt 1 failed, and I son't know how to delete....

bikurgurl
Posts: 8
Joined: Mar 2015

So...

I began having very abnormal periods about a year ago. A lot of back pain, cramping, and enormous amount of blood and discharge. Rather alarmed, I saw my GP, who referred me to an OBGYN. After tests and ultrasound, a small fluid-filled cyst was detected on my right ovary. We took a "wait and see" approach. About 6 months later, all abnormal period issues had resolved, but when I went in for a routine ultrasound, the cyst had not only grown but became solid. She decided she should remove it laparoscopically to rule out any dangers, as I have a strong history of many GYN & breast cancers on both sides of my family.

My surgery was in early January 2015 and when she went in, the cyst had grown even more and the ovary was riddled with tumors. My left ovary and the cyst were removed, as well as the left fallopian tube. Pathology came back and the tumor was labeled "serous borderline tumor" with atypical borderline cells found in the various biopsies  of the area and washings. My OBGYN sent me to an OBGYN Oncologist who met with me 3 weeks after surgery and said that I had cancer and it would not be completely staged until I had a full hysterectomy, including omentum and cervix, since I wasn't planning on having any more children. This surgery would likely cure me of cancer, and with my strong family history, would likely keep me from having further reproductive cancers in the future.

My Oncologist scheduled my hysterectomy 3 weeks from our meeting to allow my body 6 weeks to heal between surgeries. She used the Davinci robotic assisted surgery. I was in surgery for a little over 3 hours, 2 hours recovery, and stayed in the hospital just overnight. She said that it didn't appear that the cancer had spread and in my post op appointment, week 1, I am cancer-free. She took lymph nodes and biopsies and is confident that we caught this slow-growing cancer early enough to not warrant worry about spreading other than bi-annual CA-125 tests.

I feel so blessed, but to be honest, it's all happened so fast. I'm 40, have two children aged 10 & 8 and am thankful to be cancer-free, but what now? My oncologist obviously is happy for my positive outcome and has moved on to other patients more deserving of her time, but I have very little information. I don't know who to follow-up with or have a plan to stay healthy, other than following up with a genetic counselor. I started looking on-line this weekend because, while I have a call into my Oncologists nurse and will be following up with my GP & ONGYN in the coming weeks to discuss my results, I'm feeling kind of lost. Thankful that I am cured and didn't need chemo/radiation, but not sure of next steps.

When I found this site I realized why my Oncologist couldn't give me more information, not even this site, but I'm learning so much reading through the heroic stories of many others. I'm starting to understand the broader spectrum of what this cancer diagnosis, and surgery, mean for me and my health. I am thankful to God and my Oncologist for the speed at which this all occurred in my busy life as a wife and mother of two, but I feel like a lot has changed and I want to go forward informed and prepared.

I, too, felt like my quick diagnosis and surgical removal is a blessing, but I want to know more. I'm thankful to have found this support group and wish you all hugs and recovery.

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