My Ovarian Meeting

Hello everyone,

I saw Dr. B today (the Gyno/Onco). She is very nice (and very petite). She first read through my history and then asked me some questions. Then did a pelvic exam (just in case the mass was gone....) No, it was still there. But she did say that it was palpable (movable) and did not seem to be stuck to anything (that is a good sign). Then Chris and I went into her office and we had our "options" discussion....


Okay Here are my notes (well the Dr. notes she wrote for me)

Options.

Conservative Options (this is where they find no cancer in the testing).


These will be attempted as laproscopic.

1. Remove just Left ovary (and mass) and tube. If the frozen sections (of the mass) tested is benign, they stop, close up and I'm done. (outpatient)


2. Remove both ovaries (and mass) and tubes. If the frozen section tested and benign, they stop, close up and I'm done, (outpatient)


3. Remove both ovaries (and mass), tubes, and uterus, if frozen section tests benign and they stop, close up and I'm done. (over night stay)

The recovery for #1 and #2 are about 2-4 weeks, the recovery for #3 is 4 weeks.

If the frozen section comes up malignant or borderline (if it is borderline then there are atypical cells and she will treat it as malignant because of my BC history).All bets are off....

She will have to make a vertical cut into my abdomen (like an emergency C-section) and she will have to remove all the reproductive organs and lympnodes and another organ called an the omentum. It is the fatty tissue that works like an apron on your organs. That is 2-3 nights in the hospital and a 6 week recovery.

Of course if it is cancer, it depends on what kind of cancer, if it is new or secondary on what kind of chemo I will need, no radiation.

She recommends since I am HIGHLY estrogen receptive that I remove both my ovaries at least.

She is hoping that my surgery can happen on March 10, I am waiting on the scheduler now.
This is exactly what I thought it would be. So I had been talking my self into the ovary removal for the past week. She said the hot fashes will be HORRIBLE and she will probably have to put me on something for them (more happy pills).

My meds will change cause I won't need the tamoxifen anymore, I will need the meds for post menopausal women.

Chris and I had pretty much agreed that I had to get both ovaries taken out. It took me a week to come to grips with that decision. Then I was talking on the phone with my mom on the way home one day this week. She said that she doesn't just see why I don't get the uterus taken out as well, and I quote, "Laurie Jo, it is just a bag wafting around in there waiting to get sick. The hard part are your ovaries, since they are coming out, why not the bag..." You got to love the way my mom puts things huh?

So I have been debating getting the uterus taken out...

Pluses...

1. Nothing else to get sick.
2. It is a baby basket for the most part, and with out ovaries there will never be a baby in there anymore.
3. Get it all done at one time and hopefully it will be the last time I'm cut.

Minuses...

1. They are going to have to cut off the cervix and then stitch up the vaginal canal, is it going to be shorter? Will it hurt to have sex?

So far I am leaning towards the uterus too right now, but I got back and forth. I don't have to make a final decision until my pre-op appointment that will be after they schedule the surgery.

So I am going to really push on praying and hoping this thing is normal and not malignant or atypical.

Are you Serious??? Ovary-Gate?

This has been a whirl wind two weeks. It started on Monday, Feb 15 (2010). I am not going to post this until I get more news (hopefully good) or at least my options. So here is the breakdown of the past couple weeks.

Back when I had my PET CT, they had found that my ovary had lit up a little, causing a little concern for my Oncologist. (Lighting up means could contain a cancer mass). So I was sent to for a pelvic ultrasound. They found what looked like a simple cyst, so they had me come back in a couple of months. At the second ultrasound the left cyst was gone, and there was a right cyst.

NOTE: This is very normal in a menstruating women since the ovaries release eggs it can cause a simple cyst that gets absorbed back into the body.

So when I met with Dr. K the last time, she told me that when I go for my yearly "Well Woman" visit, that I should ask for another pelvic ultrasound. So Monday I finally got around to doing it. That is where our story starts....

Monday, February 15, 2010

I was called back with a FULL bladder (which is required) by the ultrasound tech. She was very nice and she had actually done both my previous ultrasound, although I don't think she remembered me. So she did her exam and told me that I do have a couple of cyst in my right ovary, they looked simple. In my left I had a complex cyst, with solid and mass in it. Nothing to get excited over, probably a hemorrhagic cyst or an egg that didn't release. She would probably see me again soon, to check on it and see if it was still there in a few weeks (4-6 weeks).

"And by the way," she asked me, "Are you in much pain?"

"Pain? No... Should I be?" I asked perplexed.

"Well it is kinda big and I am surprised you are not in pain."

"Nope, this uterus has held a 10 pound kid, no pain here."

I got dressed and left. That night I got a call from one of the Midwives from my OB/GYN practice. She told me that the radiologist had called her and I had an enlarged left ovarian mass. She then proceeded to tell me the same stuff the tech did, so I wasn't shocked, just a little worried that the Radiologist felt the need to call my midwife instead of just sending the report. But in the end my midwife said that due to my breast cancer history, she cannot help me with this, and I should follow up with my Oncologist (I know, kind of a crappy time for Dr. K to leave the practice huh?). And before she hung up?

"So are you in a lot of pain?" She asked me.

"Nope, none at all. Why?" I asked.

"It's rather big, and I thought you would be in some kind of pain."

"Nope."

Tuesday 16, 2010

I called and left a message with Dr. H (My new oncologist) and Vicki (front desk) answered the phone, told me she had the report and would give it to Dr. H for her to review. She would call me back.

I didn't hear back from her on Tuesday, but it is only a complex cyst right? No biggie.

Wednesday 17, 2010

As I was ordering food for my office in Wendy's and of course left my phone in my car. Dr. H called back and left this message...

"Hi Laurie, this is Dr. H____, since Dr. K has left the practice I will be over taking your case. I have read the report from the pelvic ultrasound and you have an 8cm mass on your left ovary. It looks as though it is solid and liquid. We need to a laproscopic procedure to find out what it is. I have called your midwifery practice and there are OB/GYNs on staff. You need to see one of them, not a midwife, to do the procedure and to discuss your options. You should call them as well so they can discuss it all with you and get you an appointment."

Uh.... I listen to the message again. Did she say 8 cm or 8mm, must be 8mm right? NOPE, listen to the message three more times. An 8cm mass on my left ovary.

I called my midwifery practice and spoke with the front desk and she was very nice and had gotten me an appointment for March 4 with her favorite doctor in the practice. I said that was nice, but I think my oncologist wanted to me to be seen before March 4th.

"What was your Oncologist's name again?" I told her. "Hold on one second, that name sounds familiar."

She was gone for about 3 minutes, came back and said, "I just spoke with the Dr. and she already knew who you were and had your report. Unfortunately, she doesn't feel like she could help you, she said you need to see a Gynecology Oncologist."

That cannot be right, an oncologist is for cancer patients!!!!! I know... I already have one.

Then came the kicker... "And she says that you need to be seen ASAP." Well this has gone from bad to worse really quick.

They gave me a name of an Gyno Oncologist. I called Dr. H (my oncologist) and told Vicki what they said, she said gave me another name of a Gyno Oncologist that is the "best of the best" and works very closely with Dr. H. I thanked her and asked her to please fax me my report. "No problem" she said.

She was as true as her word, I walked up to the fax machine and there was my report. I will only quote for you the interesting parts....

Findings:

Blah,blah,blah then... "The left ovary measures 8.0 x 5.8 x 8.4 cm. The left ovary is replaced by a large complex mass which has a 6.8-cm septated cystic component and a 5.7-cm hypoechoic nonvascular component with internal echoes."

Impression:

"...Although this could represent adjacent hemorrhagic/complex cysts, metastatic deposit cannot be fully excluded."

WELL CRAP!!!

I have an appointment with Dr. B (the Gyno-Onco) on Thursday, February 25 at 7:45am, so we can discuss options....

Of course this is all I can think of all day, but gratefully I was feeling a little better about it on my way home when I received a phone call from Sharon one of the midwives in my practice. She wanted to call to just see how I was doing.

"Seriously Sharon, it is that bad?"

"No," she said. I was just wanting to see how you are doing."

"Please," I said laughing, "I haven't heard from y'all in two years (since my baby was born) and you just now feel the need to see "how I'm doing?" Well other than the last two days, I have been great!!!"

"No pain?" she asked (now I get why everyone is asking, I have a mass the size of a grapefruit in my ovary).

"Nope, but let me ask you a question, the report said that the mass has replaced my ovary. Where the hell is my ovary?"

"It is either behind it, or has grown through it."

"So either way," I asked, "I am going to loose my left ovary?"

"I am afraid so," she said. "It is so big, they will need to take it out."

"So my only real question is if I let them take out the other one as well." I asked her.

"Why not just get it done with." She said softly.

"Sharon, thanks for calling." I said, back in my cancer stupor.

"Call me if you need anything, Laurie Jo."

Decisions, Decisions

I know it has been a little while since my last entry (okay so about a month) but nothing GREAT has been happening. But I wanted to give an update on what is going on so far in 2010.


I had my first MRI since my surgery last year, and it came back clear!! No sign on cancer. I have another mammogram in February. But that is great news (of course).


I have a few issues that still have not resolved from last year...


I am currently still on my anti-histamine (Xyzal) for the hives. I don't think I blogged it, but I am having an allergic reaction to one of my medications. My doctors and I have decided to stop taking the anti-depressant (that help with the hot flashes) since that was the last medication that I started taking. I have been completely off the medication since this past Saturday and (boy can my husband feel it (hahaha)) I will start tapering off the anti-histamine in February and we will see if that was the medication that was causing my hives. I googled the meds and it seems many people have issues with hives on this medication and the hives can last for MONTHS after you stop taking the medication.

I still have an AWFUL rash on my left breast and on my back right where I was radiated. My doctor says that is urticaria (a skin rash) and there is really nothing we can do other than the lotions and meds that I am currently using. But to find out that "wonderful" bit of information they had to do a biopsy on the bottom of my breast, causing my breast to swell and now I have lymphadema in my left breast (I know it just doesn't end does it?)


We are just tackling one item at a time. The hives first...


I also met with Dr. K for the last time yesterday. She is leaving the practice and I had to make the choice to follow her to George Washington University (in DC) or to stay at the practice I am at and see the other doctor. I decided that I would stay cause I know the nurses and the NPs, it is closer, they have my chart and if I follow Dr. K, I will have to drop the clinical trial I am currently on.


But wrapping everything up with Dr. K was not as easy as I had hoped. She recommends that I take an ovulation suppressant (injection) along with my Tamoxifen. She is worried that since I am having regular periods that there is some estrogen that could be feeding rogue cancer cells and thinks this would be good for me. There is no clinical results that say it help against recurrence, but there is positive results of it slowing down and stopping already metastatic cancers. You would think it would be an easy decision right, but the side effects of this medication could be severe. It would shut down my ovaries until I go into menopause myself, causing me to have all the menopause symptoms (hot-flashes, night sweats, depression, exhaustion, memory-loss and many (close your eyes mom and dad) sexual side effects as well) and along with that many people have had bone and joint pain constantly. I just don't know if I want to start this drug with so much going on already in my body and then deal with an injection every 28 days. Yes it could help (and could not) but what will the quality of my life be or my life with my family be the 5-10 years I am on it?

I have decided that I am going to wait until my next appointment (end of April) to speak to my new Dr. and she what she suggests and see if there is a way to test and see if the Tamoxifen is actually doing its job properly (if it is, than why do something else)?

We shall see, but as of right now I am doing okay, nursing a few old issues, but I am alive and have hair, and lets face it, that in itself is a good day!!

Merry Christmas and a Happy New Year!!

This year has been a roller coaster for us, it has been one of the longest, shortest and blurriest years of my life. But in all the shock, pain, needles and tests, there were some really wonderful bright spots this year. So, in no particular order...

• Seeing my parents for roughly 3 months. Okay so it was to help my husband take care of me and my kids while I had chemo, but my children got close to there "Other" Grandma and Grandpa this year.
• Laying down with my girls and them reaching up to rub my bald head, or pulling off my scarf revealing my shiny dome and then proceeding to have it covered with their kisses.
• Having a co-worker at another site compliment me on my "fabulous" hair and me whipping it off and handing it to her and told her if she liked it she could have it (I found out at that moment she had no clue I had cancer, so I was lucky she didn't have a heart attack!)
• Having my family's pictures taken one chilly Monday morning to document how beautiful life with cancer could be (thank you Emily).
• Meeting the most brave and wonderful women I have ever had the privilege meeting in the chemo suite and continuing a friendship that helps me cope on so many levels (thank you Penny).
• The countless hours of wonderful conversations with my chemo companions during the hours of infusion.
• Having an online group of women (my Baby Mommas) that not only kept me going each week during chemo with cards, gifts, surprise visits and for them to come together with my family and friends for my first breast cancer walk. You women were so supportive and wonderful, words cannot describe how much you all mean to me and how I will never repay your kindness.
• My in-laws who offered to help if needed (and we did) and are treating us to a week of warm weather and a bikini.
• Who could forget being on the radio (98 Rock) and being given a meet and greet with New Kids On the Block. Finally meeting Jordan Knight (at one of the 3 NKOTB concerts I went to this year) Thank you SO much Meg!!
• My husband, Chris, who laid with me when I ached, when I cried, when my hair fell out, forever telling me that I was beautiful and he loved me and who promised me that I would live through it and it would make us stronger (I did and it has).
• Being able to party at my last chemo treatment and getting a tiara that I still will where today.
• Getting my first clear mammogram back after my all of my treatments and finally feeling like I could finally exhale.

Thank you all to those that have read this blog and thought of my family and me on this journey. I know that this year was rough, but I have a suspicion that next year will be great... I mean hell it couldn't get much worse right!!! Hahahaha

I always loved this quote, but it never fit as well as it does now...

"May the best of your yesterdays, be the worst of your tomorrows"

Merry Christmas and a Wonderful New Year!

Just a Rash??!!

Yup, I finally got my biopsy results in and hold on to your boots everyone... It is just a rash (brought on by what the dermatologist feels is one of my medications). He suggests just stopping it (the medication)...

That is ingenious since he doesn't know which one is causing it... Should I stop taking the drug that is stopping the cancer from coming back. Or maybe the one that helps my bones so that my cancer doesn't metastasise in my bones... Or stop taking the one that allows me to take the other ones that save my life.... Hmmm... Decisions, decisions.

Well as of right now the antihistamine that he gave me has the rash almost gone, so I will continue to take that through into the new year, and then we will experiment on my medicines. Now if anyone can just let me know what I can do about my swollen boob, I would appreciate it!!

The Frankenstein Boob (Adult Content)

I had an appointment with my Oncologist and she was very distraught about the rash on my breast and back (in the exact locations of my radiation). So she wanted my dermatologist to do a skin biopsy on my left breast to find out what it was, a reaction to one of my medications, a simple rash, psoriasis or possible a recurrence of the breast cancer in nodule form. The last one freaked me out a bit, but she said that it would be a rare occurrence so I should be too worried.

What worried me is that if I'm not suppose to get blood taken or blood pressure in my left arm, how are you doing to do a breast biopsy? Well he did and that weekend my breast swelled up!

I believe I officially have (what my sister has coined as) a Frankenstein boob! Between the scarring, the stitch (for the biopsy) and the swelling, it is not attractive.

I saw my oncologist on Monday and she said she thinks it is cellulitis (an infection of the skin) and gave me an antibiotic to take for a week and let her know if it goes down after that. If not I might have to have a breast massage??!! done. Oh that just sounds awkward....

So here is a picture of my left breast (obviously bigger than my right) I like to call it my Franken-boob.

Mommy's New Boo-Boo

Oh wow!!!

So I wanted to update you all on how my scar revision went.

It went GREAT!!!

Dr. Singh (yes I gave his last name) is great! He did have to use a lot of Lidocaine, but it was good and he was so nice and thorough. Chris was even aloud to stay in the room with me (as long as he sat down) hahaha.

Dr. Singh did 3 layers of stitches (2 for strength and a last layer for looks).

Even bruised, it looks pretty good.

I am trying to keep it covered, but I am pretty much painless and it is only 5 days later!

It went from this....

To this!! Yeah!!