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My story.

Forherself's picture

December 10, 2017 approximately, I had Uterine bleeding.  I had been menopausal for about 10 years.  I was 66.   I had what I describe as a light period, bright red light bleeding for about 5 days.  It was right before Christmas and I was concerned.  I am an RN and knew what this could be.  I went to my Family doctor, who was wonderful.  She immediately ordered a pelvic US which I had the following week.  I waited until after Christmas to see her.  I hd the US in Jan which showed several things.  A mass on my ovary, a polyp I believe on the outside of my uterus. I havent looked at that report for awhile.   I had an HMO and the local gynecologist did not belong.  I was referred to the local hosptial and they said they couldn't se me for 2 months.  I was going on a trip for a month, and I was not too concerned.  I did call and tell the shceduler I was being referrred for a biopsy and she said there was nothing else they could do.  I saw the gynecologist and he said he wasn't too worried, but would do a DandC and laparoscopic biopsy.   He did and it came back pre cancer cells and he referred me to a gynecological oncologist.  I was now alarmed, but got an appointment a month later to see the new doctor.  I had a trip to Paris in betwwen It was the only thing on my bucket list.  I wanted that memory if I had to have treatment.   My new doctor was wonderful, but scary.   Surgery was sheduled for 2 weeks away.   Then a few days before my surgery a doctor called, with a foregin accent that I could not understand she was talking so fast, and said "Your diagnosis has been changed you have cancer and we need to have a CT done and I cannot get an appointment so you will have to do it I will call the facilty but. you need to call and book the appointment".  OMG.   I felt like someboyd slugged me in the face and then kept talking.   Now I have worked in teaching hospitals, and I knew that consultants often don't know what their fellows are doing while on their own.   I was stunned.  I said I can get the appointment.  She said call us back if you can't.  WEll that means if I can don't call.  But I did call and said I don't know who just called me but she told me over the phone that I have cancer and have to schedule a CT in two days, and I wnat to know who she is.  I can't understand her.  And I am not happy being told I have cancer without a word of concern or a moment to absorb this bad news.  She called back and I said "what is my definitive diagnosis.  She said endometrial serous carcinoma.   Now we have afriend who is a pathologist and he had seen my slides and he said there is no cancer there.  A hair splitting difference, malignant cells that have not penetrated the basement membrane.  OK.  I get my appointment, have CT chest abdomen, pelvis.   I do not hear results.  I arrive in the Or prep room.  I have to sign new consent for taking all nodes if needed, and incision if needed after rbotic surgery, and I had to ask about my CT scan.  Yes it was normal. So after surgery the surgeon talks to my huaband as is happy and said it all looked good they didn't see anything, only took pelvic sentinel nodes after injecting my cervix with green dye to identify all of the nodes, which as successful.  

I go home the next day.  I am in minor pain.  I have to inject Lovenox.   It was kind of hard even for an RN beuase they re painful, and I was taking narcotics for the pain.  I envisioned a iion sitting on my bed.   I was waiting for my diagnosis and the lion respresented the feeling of danger and helplessness I felt.  I could do nothing but wait to find out if I was terminal or not.  I wrote letters to myself to remember how I felt.  It was 8 days until my follow up appointment.  My surgeon asked me how I was feeling.  I said frightened.   She then produced my pathology report.  It said no malignancy found in the hysterectomy specimen.   She said I could still recur, but the chance was low, but I would have to decide myself if I wanted treatment.  My husband asked her what she would do if she was sitting in my chair.  And she said "I don't think I would have treatment'. I chose the name Forherself because that is my personality.  it is scary   No one knows if women with my disease need treatment or not.  So I chose no treatment.  Am I still worried?  Yes.   But this is my path.   The researchers need people who don't have treatment   I am that person.  My first 6 month visit NED.   I do not do CA125 and have not had another CT.  I will if I develop a symptom.  My surgery was July 16 2018

 

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Forherself's picture

I had my one year check yesterday.   Everything is normal.  NED.   it was a huge weight taken off me.  Returning to the office where I recieved my Pre op visits was stressful.   Now I feel greaat.  I will have 6 month checks for a total of 3 years, unless I develop symptoms of recurrence.   

Forherself's picture

one year ago today I was in the prep room at this time, waiting to find out what was inside of me.  My surgeon gave me confidence that she would do what I preferred.  I remember looking into her face, as I signed a new consent form giving her permission to take anything.   I felt helpless, but hopeful.   I was totally dependent on her.  And her look told me I could depend on her.  I received a call a couple of days before, could I arrive at 6am instead of 10am.  Yes of course I could.  We spent the night in a hotel near the hospital.  As i rose at 4am to shower with the antiseptic soap.  I thought this shower better be clean.  I was careful not to touch the curtain or walls.  Even the towel could have foregin bacteria on it.  I wished I had brought my own towel.  Then I dressed and my husband drove me to the hospital.  It was like an alternate reality.  The staff at the hospital were absolutely wonderful.  One Fellow was cold and blunt but I had told the surgeon.   I met all my team of anesthesiologists and OR nurses and surgeons.  I was told there were other surgeons available if need be, gastrenterologist specifically.  I was told just before surgery that my CT was all normal.  Except for spondylollithesis and spondylolysis.  I knew about this.  That was good news.  And the moment after I haded the nurse the clipboard with my consent on it.  By the way, i looked at my husband who was standing in the background, me surrounded by 10 or so medical personelle, and he knew I was aksing him should I sign it.  He gave a slight nod, and I signed.  After handing it over, the anesthesiologist must have pushed in the first dose of medication, because that is the last thing I remember, handing over the clipboard.  The next thing I remember is looking up from the bed in my room and seeing about 5 people all talking aomonst themselves.  I had very bad sharp pain in my left eye!   No pain in my abdomen.   My husband looked at me like we reconnected.  He was so relieved to see me move.  I could not open my eye though.  As soon as I did, I had a sharp pain.   The nurse did not know what to do.  My cousin was with us too.  She is a medical social worker and told me she wanted to be there with my husband through this.   My husband is a family doctor.  In family practice you see a lt of foreign bodies in the eye.  He knew what to do.  He told the nurse to ask for a prescription for eye drops.  She didn't know if the hospital had any.  But she came back in with the. eye drops.   She put two in my eye and instant relief.  She said she had never heard of it before.   My cousin was impressed too.  Areas of specialty sometimes don't cross, and one set of specialists does not know how to treat everything.  I was lucky to have. him, and that nurse will newer forget that treatment.  The next time she will be the one who says we can get eye drops for that.   The anesthesiologist must have taped. my eye shut, but it wasn't totally shut and something was touching my eye during surgery.   I hope they heard about it.  The surgeoin had given John a report.  There was nothing seen during surgery but we had to wait for final pathology.  She told me too, but I was very sedated and it took until I saw her again 8 days later for this news to sink in.  I had read so much about stage 1A and it can still spread.   But I was 1A with no residual malignancy in the hysterectomy specimen.  It still doesn't feel good, and I still read articles every day.  I am hoping over time I will be able to move on.   I guess the first two years are the most likely time to recur.  So I can obsess for another year.  Last week I had some very light pink after making love.   It reminded me I used to have that happen sometimes after lovemaking.  I just had an exam so I am not going to do anything about it, just note it.  We should ahve used more lubricant, and I will note this and see if it helps.   Just recording it here. Now to clean the house and prepare for guests tomorrow, but I will be thinking about this private anniversary all day.  I don't talk about this to family and friends, as their anxiety and questions are hard to deal with.  

Forherself's picture

I have been coughing for about 5 months.  In Maui in Marc I got a very bad cough and wheeze.  We learned about VOG.  It is emitted from the volcano and was bad this year.  it apparently creates suphuric acid when mixed with water in the air.  So, I requested a Ventolin inhaler be RXed to Costco.  It came and the relief was immediate.  But the cough has continued, and now hoarseness, so My Family Doctor ordered an X ray for today, and a consult with a pulmonologist.  But still, you know, it's scary.  In the back of my mind I know it could be metasteses to my lungs.  Everything I feel cold be cancer.  It is part of the disease.  Always thinking about recurrence.   I will update when I hear more.

Forherself's picture

WHEW!

Forherself's picture

 Another study 2 using a panel of ER, PR, p16, p53, and PTEN found that the majority of serous carcinomas are negative for ER and PR, positive for PTEN, diffusely positive for p16 and exhibit aberrant mutation-type expression (diffusely and strongly positive or entirely negative) with p53, whereas grade 3 endometrioid carcinomas are more likely to be positive for ER and PR, negative for PTEN (correlating with genetic aberrations of PTEN19), focally positive for p16 and show wild-type staining for p53. However, exceptions to this typical staining pattern occur in both tumor types and in general a panel of markers is the most reliable approach 2.

Forherself's picture

Everything is cancer now.  I had a fire on my stove.  I saw it from outside and bolted inside to get the fire extinguisher.  It immediately put out a 3 foot flame.  I thought everything was ok after cleaning up the mess.  But two days later I had severe back pain.  I was on an island and could not get medical care for 3 days.   I had sciatic pain about a 10.   It miraculously resolved after two days.  I saw the MD and he has given me Prednisone and ordered an MRI.  It's the weekend so I willhave it on Monday.  The thing is, one of the things that can cause this pain is cancer.   I also have spondylolithsesis.   It is a commoon cause of radiculopathy.  AS is a slipped disc.  But I had had serous carcinoma.  So it is always in the background.   It could be a recurrence.  Just like the cough.   My new mormal.  My cough is better by the way, but I will see a doctor about it in two weeks.   Just recording this.  The life of a cancer survivor.  

Forherself's picture

My back pain is due to two vertebrae growing together.  The disc is gone, and the bone is pinching my nerve.  Surgery to enlarge the spinal canal and relive the pressure.  It is always scary to have a medical problem now.  But it looks like this isn't cancer either.  Cancer was in the differential diagnosis.  The speicialists, both the lung and the neurosurgeon, never mentioned My cancer, although I worte it in my history.  WE have a very rare cancer, and I think most speciliats don't know about it.  And how aggressive it is.  Amazing to me.

 

Forherself's picture

 While endometrioid carcinomas are associated with microsatellite instability along with PTENKRASPIK3CAARID1A and CTNNB1 mutations, serous carcinomas are associated with TP53PPP2R1A and PIK3CA mutations.1303132 As a result, p53 has been developed as a sensitive marker for the diagnosis of serous carcinoma. However, a subset of serous carcinoma may harbor TP53 mutations resulting in the absence (null) p53 protein expression.33 Moreover, the p53 overexpression has been also reported in some cases of high-grade endometrioid carcinoma.21323 Hence, the combination of p53 and p16 immunohistochemical markers along with mammaglobin is superior to p53 and/or p16 alone in identifying serous carcinoma with ambiguous morphology. To our knowledge, this is the first study to evaluate the expression of mammaglobin along with previously recognized sensitive immunomarkers, such as p53 and p16, in supporting the diagnosis of serous carcinoma. The expression of ret finger protein was once proposed to be helpful in differentiating serous carcinoma and endometrioid carcinomas, however, a more recent study revealed that ret finger protein expression is associated both with high-grade endometrioid carcinoma and with serous carcinoma.34 Previous studies have also shown that retention of PTEN is highly specific for the diagnosis of serous carcinoma when utilized with either p53 or p16.8172735 However, the PTEN staining pattern and its interpretation can vary depending on the type of commercially utilized antibody to PTEN.136 In contrast, mammaglobin cytoplasmic staining is easy to interpret with moderate to strong intensity observed both in benign and hyperplastic endometrium and endometrioid carcinoma.28 Hence, the presence of mammaglobin staining strongly suggests an endometrioid immunophenotype.

Forherself's picture

Hemilaminectomy Oct 1.  Scar tissue in my spinal canal from old horse fall removed.  Recovery slow and steady.   AS the differential diagnosis of this condition is cancer, I forwarded my MRI to my. gyneoncologist.   It seems everything now might be a recurrence of my cancer.  But I will just deal with it.  My new normal.

Forherself's picture

Today.   All ok.  I did have to explain I had my investigation of cough.  The asthma specialist said he thinks the cough is from my upper esophagust.    And surgery.  And Had a growth in my spinal canal.  The neurosurgeon said it was pannus.  The PA I saw said she will look it up. It made her a little uneasy, but I have to believe my neurosurgeon.   Not my surgery anniversary yet.   Jan 16.   So 6 month check next.   N E D

 

Forherself's picture

Today is 18 month anniversay of my surgery.  I have 6 month checkups.  No scans, no CA 125.   I am content with that plan.  I just watch myself carefully.  I know I can relapseand scans would catch it earlier, but false positives are such a punishing thing to deal with.  My stage ia with nor residual malignancy in the hysterectomy specimen has no recommended treatment.  And recurrence can happen even with treatment.  

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