Scary.
General November 20th, 2009So yesterday I went to see my doctor for the post-game wrapup session. The surgical report, see how everything is healing up. Oh yeah, find out about the pathology report which I’ve been trying so hard not to obsess about over the past 2 weeks post-surgery.
The healing is going well, especially when I don’t overdo it, and more and more even when I do. I have almost no pain now and haven’t taken anything stronger than Tylenol for over a week, and nothing at all since Monday. He said everything is healing well, all the inside stitches seem to be doing what they’re supposed to, and he gave me some treatment to stop the end of the discharge/bleeding that’s been continuing. The treatment lasts one week, then I can take baths & go swimming. (And make whoopee, although before we saw him my husband & I agreed to tack another week or two on to the healing time no matter what he said, because he never seems very conservative with healing).
Surgical report had nothing special in it, nothing he hadn’t told me when he came to discharge me from the hospital, so no surprises there.
Can you feel it building up? Yeah, so could I.
The pathology report was in, and it wasn’t perfect. I mean, it’s fine, I most likely don’t need any further treatment (to be confirmed today or Monday at the tumor board meeting held today). But instead of a nice pre-cancer state of affairs (my pre-surgery diagnosis), they found cancer. And not even the earliest stage of endometrial cancer, but a tumor that had started to invade the uterine wall. Official stage is 1B in the old staging system (they just changed all the staging classifications in the last few months).
What does this mean?
- Well, for one thing the decision to go ahead with the hysterectomy instead of pushing my luck with hormonal treatments was clearly a good one. With a tumor already penetrating the uterine wall, I could have easily been one of the scary 5% who have their disease significantly advance despite hormone treatment. The risks of the hormone treatment seemed out of hand already when I thought we were dealing with pre-cancer, but now I am very reassured we went the surgical route.
- Maybe this explains why we had such a difficult time having a baby. Sure, my age has a good amount to do with it too, but my hormone tests have been okay and we have had many shots at good embryos or good timing with IUI & maybe nothing could really stick around & grow because of so much abnormality in my uterus. One thing for sure, the feeling I had in June that my embryos would have a better chance in someone else’s uterus (surrogacy, which we are pursuing) is clearer than ever for me.
- Keeping my ovaries long term may not be a good idea. In fact, I’m not so sure about keeping them shorter term either, and have been thinking a lot about this. Since most of the time they remove them without discussion there is basically no data on what kind of risk I’m running. I will, of course, have lots of follow up testing and monitoring to try to pick up anything amis, but I do wonder how effective that is. I need to give it some more thought, but will likely go back to one of my second-opinion doctors from June and get another person’s thoughts on this.
- Do I do another re-reading of the pathology? What will it prove, what will it help? The decision to do or not do anything will probably be based on what the second opinion doc says.
- I know I face years of worry - intense during the testing phases as they come up (more frequent in the first years, then decreasing, then much less frequent as time goes on). That worry factor probably would have been there with another diagnosis, but is obviously increased now.
- Good luck getting me off the carb-restriction thing. I started the carb-restriction stuff just for weight loss several months before the diagnosis. Then as I was researching what wellness changes to make I saw all kinds of stuff about how sugar feeds cancer. I was already liking low carb because I felt so good, no hunger & it was working for my weight, but the sugar (and other carbs) feeding cancer thing sealed the deal for me. Still does.
Otherwise, the pathology results of pre-cancer, stage 1A or stage 1B have the same further treatment recommendations : NONE.
So in some ways I’m worried about nothing. On the other hand, I found out yesterday that there is a big difference emotionally between pre-cancer & cancer, even if the physical treatment side is the same.
I don’t know if my reaction is normal or not. My husband seemed to think I was creating drama when we had “good news”, but since I had really focused on having either the surgical result be pre-cancer or stage 1A I admit I was really shocked & scared when my surgeon told me of 1B. I do think it’s something I’ll need time to process. Luckily I have a new counselor who I am really liking.
22 Responses to “Scary.”
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November 20th, 2009 at 4:16 pm
I wish you health and happiness! I hope everything works out for you. I would be nervous too listening to the doctor’s conclusion.
November 20th, 2009 at 4:56 pm
Goodness. That’s a lot to take in. I can definitely see how emotionally, “pre cancer” and “cancer” have different reactions and feelings. Pre cancer…you know, you’re not quite there yet. Cancer? It is a new revelation, whether the treatment is the same or not. You have/had cancer, and that is something that takes time to get used to. FWIW, my husband would totally react the same as yours. It sounds like you made the right decision. Is life going to be a little more cautious now? Sure. But you can move forward with more peace of mind in terms of your treatment.
November 20th, 2009 at 5:36 pm
Aw…that is A LOT of news to swallow! I don’t know what the circumstances of your endometrial cancer were, but my grandmother had a hysterectomy when she was in her 60’s for it, and lived to almost 90 without any problems or re occurrences of the cancer. I wish the same for you.
November 20th, 2009 at 6:14 pm
Wow. I’m hoping for the best for you!
November 20th, 2009 at 8:58 pm
Sure, it’s scary and confusing and alot to take it. Thankfully, you are staying on top of things and it sounds like you have good doctors and support. I’m glad that you are having a quick recovery with very little pain. My prayers and best wishes remain with you. (big hug):)
November 21st, 2009 at 5:15 am
Your hubby is right that it’s good news, but it’s not what you’re expecting so you weren’t prepared. Logically you’re working your way through it very well, but emotions and logic don’t always go together. As a counselor myself, I would tell someone in your situation not to try to control your fear but to develop strategies to help you cope with it when it shows up.
November 21st, 2009 at 5:52 pm
Oh honey, I understand. I am so thankful that you decided to be aggressive in treatment. I want you around a long long time. Morn the news and then celebrate, you picked the right road to travel and you are a surviver! xoxoxo
November 21st, 2009 at 8:32 pm
Round,
I am sorry to hear that some of your news was upsetting, but some of it was good! However you do have some good things to look forward to, spending years with a good husband, surrogacy and a new baby:) and you have a great hubby and mother to lean on and laugh with… stay strong:)
elaine
November 21st, 2009 at 10:30 pm
Lots of hugs. It’s a lot to take in, particularly as you say when you were thinking it was pre-cancerous and it wasn’t.
November 21st, 2009 at 11:07 pm
Sarah:
Glad about the good news and saddened by the not so good news. Although I have not read Suzanne Sommers new book (just hadn’t the time) I really think you should get a copy as she talks about different cancer treatments etc. Not that I think she spouts the gospel, but it made sense in her radio interview (where I first heard about it). She may present some options you had not considered.
On the other hand, what is the downside of removing the ovaries? Didn’t you harvest some of your eggs? I think good health is more important than ovaries, but then again I am menopausal (without kids) and content about it. I know you have a different kind of life in mind and I support that 100%.
You have made the right decisions up until now and I am confident you will continue to do so.
Love and hugs
Shari
November 22nd, 2009 at 7:24 am
It seems I’ve missed a lot since Ive been gone. Im sorry to hear of your diagnosis, but it looks like you have done the right thing about getting the surgery. I am happy to hear that is behind you now. I think your reaction is definetely normal, i mean it is what it is, and you have every right to feel what ever way you want about it. You may very well be worrying for nothing, but that doesn’t stop it from happening. I think anyone would worry, but it sounds to me that you guys caught this just in time and have done everything right to get rid of this once and for all.
November 22nd, 2009 at 7:44 am
I will keep you in my prayers. and really.. we are women, we worry no matter what.. silly men. Keep your head up and know that all you have done and are working to do IS having an impact positively on your health.
November 22nd, 2009 at 3:21 pm
I’m so glad the surgery is behind you, Sarah. I know the news is not what you had prepared for but it must be a relief to know you went with the right choices. Get well soon, little friend. I’m praying for you.
November 22nd, 2009 at 4:14 pm
Oh, I almost forgot. The pork loin in mango chipotle sauce is made using Bronco Bob’s. You can order it here:
http://www.lwcbrandsinc.com/broncobobs.html
I just throw the roast in a crockpot and pour this stuff all over it.
November 22nd, 2009 at 7:18 pm
It is scary, Sarah. I went through exactly the same thing last year — the “pre-cancer, let’s start you on hormones” diagnosis, but “let’s do a biopsy just in case.” I got a call the Moonday before Chrismas saying, “It is cancer. I’ve scheduled yoou foor surgery in two weeks.” I had exactly what you have: stage 1B with a tumor next to the wall of the ovary.
My surgeon recommended a complete hysterectomy (lapooroscopic) because, as he said, since I was post-menopausal, “you don’t need any of that any more,” and I’m very glad I did becuase I don’t have the worry that it will spread. He’s sure he got it all. I’m on hormones. I just got my 9-month checkup and everything is fine. They’ll keep monitoring you and I think you can start breathing normally now. I am so glad they caught it early (for you as well as for me).
November 22nd, 2009 at 7:27 pm
Hi again, Sarah. I went back and read through your last few posts. My (U.S.) insurance paid for nearly everything; I had to pay $60 for the operation.) BUT I had to beg to stay in the hospital overnight. The insurance just pays for 23 hours. I had my operation at 2 p.m. and they wanted me out of there by 8 p.m., which was absolutely ridiculous. My surgeon agreed to keep me in overnight, but I had to be out by 10 a.m. I live alone, and while everything went well and there were no complications, the first few days were scary. I’m glad you did not have that worry.
November 22nd, 2009 at 7:41 pm
You’ve already been through so much, all this news must seem so daunting. Don’t forget how huge all of this is. Give yourself time to take it in and absorb in one bite-size peice at a time. Get well soon and don’t rush on any major decisions just yet. Take good care of yourself.
November 23rd, 2009 at 5:20 am
Sometimes it feels like we just get up on our feet and the ground shakes again. I know it is impossible not to worry but it sounds like you are making good decisions and searching out the expertise and information you need. Trust your instincts, you will find a way through this.
November 23rd, 2009 at 8:11 am
I’m glad that you’re healing so quickly and sorry that the pathology wasn’t as good as we hoped. I had a complete hysterectomy with ovaries removed several years ago, in my mid-30s. I say let them take the ovaries. Menopause is a bitch. And then it is over. Life goes on. Sending much love your way, xoxo
November 23rd, 2009 at 1:41 pm
I’m sorry about the pathology report - just said a prayer for you and for wisdom for those in charge of your follow up care. Heal quickly!
November 23rd, 2009 at 7:51 pm
That’s a good pathology report, though
I had at least 5 doctors tell me, “If you have too have cancer, endometrial is the one to have.” 96% of women who have Stage 1B are safe — it can’t reoccur (because the uterus is gone), it is unlikely to spread, and you will have check ups to make sure that it doesn’t.
December 4th, 2009 at 12:13 am
I am so glad you stopped by my blog. I have felt so alone in all of this. It’s nice to hear from someone who has been through it.
So, you had the hysterectomy before you knew for sure whether it was cancer or not?
I have not met with my oncologist yet so I don’t know the details of my surgery or what will happen after yet. Or whether they will take the ovaries. Everything is happening so quick. I got the diagnosis 3 days ago, I meet with the oncologist next week, and I am having the hysterectomy december 21. It’s so scary.