Well, I finally called the doc yesterday for my path results. I was like, I just want the all clear. Im so patient...NOT. lol
So he said it took longer than usual and apologized for not calling and letting me know this was the case but oh well, such is life. So I guess I had a large mucinous cystadenoma on my right ovary. This was nothing that showed up on my tests, so go figure. He is going to have a second opinion done on the path as these things are pretty rare and can fall into the borderline catagory. So I am holding my breath once again. He said try not to worry, just better safe than sorry. which I agree with. He also said I had 12 fibroids....yikes, imagine that? I thought I had 2...nope, 12. I had severe endo and adenomyosis, multiple hemorrhagic cysts and endometriomas all mixed into this bag of mess. Lots going on in there I guess. He said we can look at photos during my post op appt...on Nov 14th. He said once Im healed I will feel so much better, and can't even believe I was able to function with all I had going on. Im looking forward to being pain free, that will be novel for me.
So that is the update, Im relieved on one hand and still a teeny bit stressed on the other, but Im putting it out of my head til I have something to worry about....lol I am heading to Maine this morning for a few days but will be in touch. I was going to go yesterday, but I lost my ambition by the time I talked to the doc...so I just stayed put.
I hope everyone is having a great weekend and healing well.
Love you all
w00t i m saying grqatz a little early for u .. borderline is the best cancer to have
if there can be a best associated with that word
i look up a lot of things on emedicine but i make sure i see this once a day
"Complete excision of the disease must be achieved if at all possible. Comprehensive staging, as described above, should be a part of every operation. Although stage may or may not affect future treatment, it is of significant prognostic value and therefore is of value to both clinician and patient. In one study, 77% of patients with invasive peritoneal implants also had noninvasive implants. Comprehensive debulking and staging decreases the chance of a sampling error that could result in an inaccurate diagnosis and prognosis.
In most instances, surgery is curative for patients with confirmed stage I disease. If the tumor is unilateral and adjacent to normal tissue, unilateral cystectomy can be performed; however, inspection of the capsule for signs of rupture should be performed before resection. If no normal adjacent tissue is present, oophorectomy or salpingo-oophorectomy should be performed. If the contralateral ovary is normal in appearance, a biopsy should not be performed on the adjacent ovary because of the risk of ovarian failure if fertility is an issue."
lol Sharon.... You are too funny. They are actually tasting better every day. The problem is, everything is tasting better...hehehe. I think the taste buds have woken up, which is a good thing in one way...lol. I however have been nauseous now for about 4 days. I don't know what is up with that, but I hope it goes away. I mean, it is great from a weight loss standpoint, but not good from a feeling good standpoint...
How are you doing Sharon?
God Bless ya
Wow, Laney. My fingers are crossed that the second opinion comes back negative (meaning non-cancerous). That is a lot going on. I didn't get to have my total hysterectomy with my surgery but from just having the cysts and right ovary and tube out I can't believe how much better I feel. Those things must have been bothering me for some time. Hope that nausea dissipates soon so you can enjoy your time at the beach.
Laney, Wow is right ! You have been through one heck of a lot !!!! And I'm so hoping that it will be o.k with the second opinion. It really is better to be safe than sorry and this way, you'll be able to put it totally out of your mind. 12 Fibroids !!! Good Grief !! You really do need a rest !!
Enjoy that lovely scenery at the beach and think only good thoughts ! and stay in touch with us , please.. I'm sure all will be o.k...
Thanks you guys. As I have said before you are the best. I haven't had the best few days though. I think the menopause blues are hitting me really hard. I have been crying at the drop of a hat. My friends and family are so worried, but I am trying to get out of this funk. I just can't seem to do it. When I talked to the nurse on Friday, she said no hormones til my follow up, at the earliest. I was like...UGH...I don't think I can wait that long.(3 weeks) So I posted a question on the menopause expert forum as I felt I was losing my mind and he kinda reassured me, all this emotional up and down is from instant cessation of hormones. I knew that was the case, but I kinda felt like I was losing my mind. Also, he said there is increased risk of blood clots if hormones are started too soon after surgery. Geeze, would have been nice to hear that from my docs office. I don't think the nurse knew that though.
So, here I am in Maine, went to a state park called twin lights in Cape Elizabeth, which was absolutely beautiful, I am going to try and upload some photos.. It was a beautiful day and the waves were crashing against the rocky coast. Sea spray in my face and just the smell of the salt was so nice.
I hope you guys are doing good too.... and I hope I can report feeling a little better SOON. I am so not a down person....and I just want to feel better :(
I want to say two things (and I might add more as I go along).
First of all, I am so glad that your surgery is over and done. Now it is just the waiting, but waiting to hear if the path report indicates if your (mass, right?) is borderline as opposed to which stage it could be is at least a bit of good news (This is not helping much is it?).
But, now here is the other thing...which will come as a huge revelation to you, I am sure :) I was kind of sad when I read your post. And, if I could (if, if, if, if) I would go to Med school just for you so I could help you feel better. I am not a doctor.... Medhelp has been very kind to me over the years but they did suggest a number of years ago that I sprinkle a few (more) reminders about my lack of (professional) Medical background. OK... so, I am not a doctor. But, I have learned one thing in all of the reading and talking I have done regarding hormones for the past 9 years... keep asking questions and keep researching.
There are going to be times you will pick up a book and not want to read it... I get that... so, pick a few passages... Go on line... Speak with savvy women you know who are on hormones (or not) and of course, you will see many contradictions, but you will also see answers. And, you will be able to sift through this stuff (soon) and find out what you need to do about it. And, with your professional background in Medicine, it will all gel together fast for you. But, don't give up.
OK... so much for the lecture part (or maybe not)...
You all know that I have recently came across more and more evidence about using Progesterone if you do NOT have ovaries and that even though there is a huge camp of people who say you must use (bioidentical) Progesterone as part of your hormonal treatment (I am going to speak for women who have no ovaries/no uterus), and that you should probably decrease estrogen if you are using it as a supplement... balance...balance...balance... well, I bought into this, too. Unopposed Estrogen in a woman who has ovaries and a Uterus is another matter all together.
But then I started to put it all together and even though it was hard to swallow, I have been researching like crazy (AGAIN) since last Feb/March (08) when I first hear read Dr. Vliet's work on Progesterone/no Ovaries and then I started to experiment on myself. I mean, seriously, so much of this is cutting edge, what else could I do? And, so I lowered my (very high) dose of Progesterone and kept the same dose of Estrogen (Vivelle Patch.. Estradiol) and geez, lo and behold, I started to feel so much better. Is any of this making sense?
I was not necessarily doing any harm to myself by using the progesterone and I was following doctor's orders and I was a huge believer in using the progesterone. But, apparently I was unable to utilize it effectively and I will say that I was probably doing more damage by not letting the Estrogen go through. There is evidence now (some of Dr. Elizabeth Vliet's work) that Progesterone will block the effects of Estrogen. There is another camp that says it is the other way around. And, I was Pro-progesterone ... but it all backfired on me when I started to get serious leg cramping.. then there was the issue with my Vertebrae (ruptured disc).. then there was the ever-growing belly fat to the point of desperation after following a very Spartan diet and exercising quite regularly for years.
WHY am I going into all this? Well... because I needed answers. I thought I had them. But, I knew something was not right. But, the more recent research I have been doing has only supported what the Non-progesterone camp has been saying for years. Well, they say if you don't have a uterus, you don't need progesterone. I will say if you don't have ovaries, you don't need it (according to Vliet).
But, this is all so complicated. Your body makes Estrogen from fat and it is an estrogen called Estrone. Exercise, life-style, eating healthfully, are critical for keeping the estrogen from becoming excessive and also critical so that the fat that the body is making because women's bodies crave estrogen actually makes the estrogen and does not become just more fat. It is a vicious cycles ("Outsmarting the Mid-life Fat Cell" By Debra Waterhouse, MPH., RD). For those who have Ovaries, they can secrete a small amount of Estrogen and Testosterone for years and years beyond Menopause.
I use Estrogen and Testosterone... You don't want an excess... and, in "Screaming to be Heard" Vliet gives the recommendation for blood levels that you should have as your target. For me it is working. I am feeling hopeful again. I have to have my levels checked soon.
My Oncologist placed that Vivelle Patch on me the day after surgery back in Sept. 2000. But, recently I heard that she has a "rule of thumb"... "No hormones after 50." I'd had to call the nurse over there to see about having an MRI last year (checking on Surgical clips) and something came up about hormones and this is when I heard of this "rule of thumb." OK. Well, I will say this... I am a bit surprised she has a "rule of thumb." We are all so individual. I would not be putting sentences together if not for what I do. I could not live with the leg pain...The fuzzy thinking, the disorganization, the irritability. I needed more estrogen and now it is finally getting through since I quit the progesterone.
My fingertips are "normal" and to me this has been the biggest test of all. The pain I'd had the past 7 - 15 years on my fingertips from splits and cuts and it was so bad that I honestly was trying to figure out a way I could get a divorce and move out of state to a warm climate and yet still stay married to the same guy (28 years)...ok... couldn't be done.
But, I have not looked forward to winter for years and years now. And, yet, here I am feeling normal again. I can type. I can peel an orange. I can eat chicken with my hands. I can play catch with the kids at work. I can sign their daily point sheets without fear of getting paper cuts ad nauseum, etc. In the years before my surgery I obviously had declining Estrogen and declining Progesterone (that is when the progesterone would have been very helpful) and I will say, although I did not feel wonderful the year following my surgery, at least I was on a steady dose of Estrogen and my skin situation was good... the splits and cuts were kept at bay. I remember that specifically. That got me to thinking. It was in the second year after my surgery that I added the Progesterone thinking that is what I needed, since I felt so foggy in my brain. And, at first it truly helped (wondering if I still had some enzymes in my system that helped utilize the hormones) but in retrospect, I needed just a bit more Estrogen...Hmmmm.
LANEY, If you are still with me, you are one heck of a woman.
Ask the nurse who mentioned the blood clots about which type of hormones she was speaking. I have never heard of the Bioidentical estrogen causing blood clots after surgery. I have heard that this could be a possible side effect of the Synthetic hormones. But, this is where I will pull back, because, again, after the change in my protocol and the awakening of sorts I had regarding Progesterone and not knowing your history, perhaps in your case, there is concern. But, I would ask ... and then ask someone else. Get to the bottom of it all. All too often, I have run into people who knew nothing other than the media hype regarding the hormones that were studied in the "Women's Initiative" back in 2003 which was abruptly stopped. That study was flawed to begin with, but it also never incorporated the Bioidentical hormones. I have never used Synthetic hormones.
I know there are women who cannot take Estrogen (Bio or not). I get that. But, again, this is where your research will come in handy. How much estrogen is circulating in the system from the fat producing cells in the system making Estrone? How quickly do you metabolize estrogen (active people will probably metabolize the hormones much more quickly. Are there tumors or cysts that are "fed" by Estrogen? I know this all needs to be weighed. But, again, I would ask. Women's bodies were designed to need estrogen.
And, I will add, that it seems Estradiaol is the favored Estrogen (E2). It is what I use and compared to the compounded creams, I feel better being on Estradiol only. Keep that in mind while researching. That is what is in the Vivelle patch and if I am not mistaken, this is in Climara, too. And, both are Bioidentical.
And then there is the Testosterone.... But, I will close this chapter for now.
I hope you get some help soon. I feel they left you hanging and you are paying a price (feeling miserable) for this.
I wish I had some Fairy Dust for all of us.... we deserve better, but for now, we are on the cutting edge. I dont' have 50 years left to figure all this out before I get help. That is why I jumped into this hormone thing... And, why I stay. I know I cannot speak for all, but for those who need a voice, perhaps this LENGTHY post has been hepful. Keep researching.
I cannot and would not add anymore to what Mary says. I trust her and know you can, too. All I want to tell you is that way back in April-ish I wrote the exact words you did...that I just want to feel better...probably even added the sad face = (
You WILL feel better once you get the hormones going. There is hope so just hang on. Sounds easier said than done when one day runs into the next and the sun just ain't shining. But, I did feel better when I got to a good dosage and I know you will, too.
w0w that is alot of information but all of it is good.
I am considering estrogen but I have to wait until after my next mammogram
as there are some suspicious lymph nodes being compared.
I look forward to the day that i can think clearly and grow a complete
set of fingernails again. Ah I dare to dream :)
And dear Laney ...
It seems we are kindred spirits as I have never met a beach I didn't like.
I stayed in the ocean for 5 straight hours one weekend day before my surgery.
Ah the healing powers of salt water.
I hate those reawakened taste buds but i drink in all the good changes (like breathing).
I pray you are all smiles now :)
Thanks so much for the encouraging words. I keep looking for the light at the end of the tunnel and take comfort in knowing so many others have gone before me and come out of it feeling better than ever. I know I will too, just really hard waiting for the hormone replacement to start. I remember thinking pre surgery, that I might just not take the hormones as there can be controversy around them. Well let me tell ya, when my symptoms hit full throttle within 72 hrs post op, I was like...BRING EM ON NOW, I can't live like this. Ugh, so still I wait but I know things will get better. Thanks for all your support, I really appreciate it.
I sent you a note of thanks. As I stated you are one in a million and I thank you.
I am going to the bookstore today to look for those books you recommended. I am really trying to be my own advocate as I know it is so necessary. Thank you so much and I do look forward to feeling more like my own self. :)
I am glad to hear the good news and hope that when they do further testing, it will too come back as negative (no cancer)! You have been through so much and your hormones are probably all over the place (from what other women have said), so hang in there. You aren't crazy. It will get better :)
I confess to not reading all of your posts, lol, but wanted to just mention to you My doc put me on progesterone for a brief period of time and even progesterone shots in my butt, however, I didn't like it at all, made me very, very depressed. A noticeable difference. I will not take it again. (He was trying to bring on a period to see if my cysts went away) This is all before my surgery, but just curious what your comments on that would be.
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