Tag Archives: ovarian cancer

The Saga of the Wound Vac, Part 2 (and a pathology update)

Published / by Kim / 3 Comments on The Saga of the Wound Vac, Part 2 (and a pathology update)

I know, I know. I’ve been a bag blogger. And a bad ABC-alonger. I fell behind at B this year. That has to be a record. I plan to catch up this weekend.

For now, I have more about the wound vac to talk about. I talk about the wound vac a lot, unfortunately, because my life is pretty much consumed by this thing these days. The wound is much, much smaller now. It’s only (only, ha!) about 2 inches long, an inch wide, and a little under an inch deep. With its smaller size, however, have come a raft of problems.

The most pressing problem – to me, anyway – is that the foam has begun to smell. A really horrible smell. My nurse thinks it smells like cigarette smoke, which I think is crazy because it clearly smells like shit. Literally. When I first began smelling it, I was constantly checking the litterbox to see if it needed cleaning and it was usually fine.

The first time it happened, the nurse and I were really worried that there was an infection. But when she took the dressing off and cleaned the wound, the wound didn’t smell. We eventually deduced that it was the foam that had the smell, not the wound. The nurse from the wound vac company (KCI) was here today and the first thing I brought up was the smell. She told me that it’s normal. Normal! She said that when the foam touches the drainage, it smells. So basically, live with it. Which is diffcult, because it makes me nauseous. I started piling on more tape to hold the smell in,which she says is fine, but it always seems to break through.

Now I’m even more reluctant to leave the house. As if having a tube attached to my body, coming out of my pants no less, with blood flowing through it wasn’t bad enough, now I’m constantly wreathed with the smell of shit. Attractive, right?

The second problem is that the pressure on the machine has been constantly fluctuating. This was a problem in the beginning, but we tracked it down to the nurse not making the hole in the plastic large enough before putting on the tube, so it was fine for a while. It’s possible that this new fluctuation problem has been due to too much foam being put in. With the KCI nurse looking on today and giving direction, my nurse used half the foam she normally does. So hopefully that will solve that.

Today we also changed the pressure from 125 to 150. (I’m not sure what units those are.) Also, we changed it from continues pressure to intermittant pressure. That means it goes on for 2 minutes, then off for a while, then back on for 2 minutes. This sucks – ha ha! I’m so funny! You get it? Sucks? Sucks? You get it? – because every time it turns on, it hurts. So I was shown how to change it back to continuous if I can’t take the intermittant anymore.

Hopefully, it’s only 2 more weeks with the wound vac. If it’s more than that, I may go insane.

There’s good news on the pathology report, though. It turns out that the pathologist was just being super descriptive. The tumors didn’t change into a form more likely to turn invasive. So hurray for that. Treatment remains the same, which is basically no treatment. Just vigilance and more surgery if they come back again.

Final Pathology Report

Published / by Kim / 6 Comments on Final Pathology Report

First, let me say thanks for all your comments and good wishes. I usually reply to some comments by email, but something seems to have happened somewhere and I’m not getting comments sent to me by email*. But I’m reading all your comments and really appreciate them.

On Thursday, I went back to the doctor so he could check the wound.  While we were there, he discussed the final pathology report with us. Surprisingly to him, the cysts were not cysts and not benign. They were, in fact, a recurrence of the borderline tumors. No one was more shocked than my oncologist, because the growths he removed didn’t look like the previous tumors and the frozen section biopsied in the OR came back benign.

This is actually the second time the frozen section came back benign only to have the complete biopsy show a different story. That’s a fluke, of course, because the frozen section is taken at random, and it just happened that each time they took a section that contained benign tissue. The implications of this are dire for me if I have another recurrence, though, because next time, he clearly can’t trust the frozen section and has to just proceed as if it’s a return of the cancer. That means this was my last shot at preserving my ovary. Next time, it comes out, no questions asked.

And the thing is, since this is the second time this has come back, there’s a very high risk of it coming back again. To complicate matters, there was some ambiguity in the wording of the report. My original tumor – removed in March 2003 – was a serous papillary tumor, which is a borderline malignant tumor with a practically nil chance of turning into invasive cancer. The second time around – September 2004 – was the same type of tumor. This time, however, the pathologist wrote “focal micropapillary tumor.” (I may not have that exactly right, but it’s what I recall.) Apparently one of those words – focal or micro – means it would be the same type of tumor as the others, more or less, with an extremely low chance of becoming invasive cancer. The other word is a problem, though. (And I can’t remember which word he said meant which, and Scott and I each say the opposite.) The doctor said that recent studies have shown that borderline tumors with the other word have a much higher risk of recurrence and a higher risk of turning into invasive cancer.

So the fact that both words were used confuses the issue. He was presenting my case to his board yesterday and will be discussing it with the pathologist to get more information. He thinks the pathologist was just being extra descriptive, but is trying to get it cleared up so we know what’s what. Obviously, one type of tumor would require a lot more monitoring for me than the other.

He’s pleased with how the wound is healing, though, so that was a bright spot. He and the nurse seem to believe that it will be completely healed in just a couple of weeks. I find that difficult to believe, since it’s still so big, but I’m sure they know what they’re talking about.

*One of these days, I’ll get around to looking into that.

A Dr. K Memory

Published / by Kim / 1 Comment on A Dr. K Memory

Since going back to Dr. H and firing Dr. K, I remembered that I actually met Dr. K before. And I didn’t like him then, either.

After my first surgery, all I could eat was watermelon for a while. My stomach couldn’t handle anything else, but the watermelon was good because at least it kept me hydrated. After the second surgery, however, I was ravenously hungry and eating fried chicken the day after. Even though Dr. H had to repair a perforated bowel the day before. I felt really good and really hungry and I wanted fried chicken, so Scott said screw the hospital food and went and got me fried chicken.

When Dr. H came in and saw me with chicken, he said, “Good. You’re eating!” And that was that. But when he was off duty and Dr. K was making rounds for him, he was shocked. He called Dr. H to tattle on me, that I was eating fried chicken after a bowel perf, and Dr. H just told him, “She knows herself. If she feels like she can eat it, I’m going to let her eat it.”

I didn’t remember this until recently, after I fired Dr. K, but I wonder if it was in my subconscious when I had that consultation with him and was yet another thing that set up that visit to be adversarial right from the beginning.

Less than a week to go.

Like Night & Day

Published / by Kim / 9 Comments on Like Night & Day

That title describes my change in attitude after seeing my old oncologist last Thursday.

To refresh your memory, the other oncologist – Dr. K – said the cancer is back, and he just wanted to remove my remaining ovary and be done with it all. He said the cysts were too big to remove laprascopically. He basically poo-pooed my concerns about surgical menopause at such an early age and my concerns about taking HRT for so long. He was impossible to get information out of and I hated him.

He sent me into a month-long bout of sometimes serious depression, in which I was having a severe existential crisis and spent a lot of time wondering why there was even any point in continuing to live. I felt old. And I felt like a failure as a woman. And I felt scared and alone, because  my doctor didn’t seem to really care about me. I was hiding it fairly well most of the time, but the fact is, I was only getting out of bed in the morning by sheer force of will. I could easily have just spent the past month in bed.

Fast forward to my old oncologist, my original oncologist – Dr. H – whom I saw this past Thursday. He completely disagreed with Dr. K’s diagnosis. He was surprised, at first, to hear that I really didn’t like Dr. K and said that it was Dr. K who originally made him want to go into gyn oncology. I didn’t say it to Dr. H, but that surprised me, because I can’t see Dr. K inspiring anyone.

 When Scott and I walked into Dr. H’s office, he remembered us, even though it’s been 4 years since we last saw him. When we talked about the IVF as part of my medical history with my crappy ovaries, he asked about their success or lackthereof. When I said they were unsuccessful, he said he was sorry. And he was sincere.

r. H doesn’t think the cancer is back. His opinion is that we’re dealing with simple cysts. Non-functioning cysts, but cysts nonetheless. He has some small concerns about the fourth, smallest one, because of that debris, but he concurs with the original sonogram tech that it’s likely just old blood. He also thinks that, unless the biopsy in the OR surprises him and it shows cancer, there’s no reason to take out the ovary. He asked where we were with the IVF with regard to continuing, because he wanted to take that into consideration when he perfomed the surgery.

He cares about preserving my fertility. (Ha ha. Okay, stop laughing at the idea that I have any fertility at all. Seriously. Stop.)

And not just my fertility. He takes my concerns about surgical menopause seriously. We discussed at length the studies about prolonged HRT and the possible increased risk of breast cancer. His opinion is that the risk is lessened for a woman my age, because having estrogen in my body at 39 is natural, whereas the natural state for women of menopausal age is for there for be no esrogen. He believes it’s that unnaturally lengthened exposure to estrogen that raises the risk of breast cancer. So if I do end up on HRT, it would be gradually tapered off as I get older and closer to a natural age for menopause.

He has more concerns about progesterone than estrogen, so if it turns out that I have to lose the ovary, he’s recommending the removal of the uterus, as well. The reason for this is that you need to take progesterone as part of your HRT when there’s a uterus in place, so he would prefer to remove the uterus which would allow me to only take estrogen. But here he’s leaving the decision up to me, because of the possibility that we may try to use donor eggs. With no uterus, that would obviously be impossible.

So the surgery is 12/17 and I have an MRI on 11/26. The MRI will give us a better idea of what we’re dealing with, since MRI’s are very good at seeing cancer. Depending on the MRI results, currently only a cystectomy is planned. The cysts will be biopsied while I’m in the OR, and I’ve already given him permission to remove the ovary if any cancer cells show in the biopsy. I’m still considering my options about the uterus if it comes to that. If the biopsies do show cancer cells, he’ll also check some lymph nodes and possibly remove the rest of my omentum if he left any there the first time.

He was going to do it laprascopically, but Scott reminded him about the bowel perforation last time – which he would have discovered for himself later that evening when he reviewed my surgical records, which he took with him from Beth Israel – and he doesn’t want to risk another bowel perf or vascular damage. But there’s something else Dr. K was wrong about, since he said it couldn’t be done laprascopically. (Which, in retrospect, what did he know, since he doesn’t know how to do robotic surgery.) The good news is that he thinks he’ll only need about a 4-inch incision this time instead of the 7-inch incision he used the last two times.

To say that I’m more comfortable with Dr. H would be an absurd understatment. The relief that I’m feeling right now is palpable. Scott tells me that everything about my demeanor changed the second Dr. H started talking. It’s still possible I could wake up ovaryless, but now I know, with 100% certainty, that if that happens, it will be because Dr. H had to do it to protect my health, not because it was just easier for him that way.

If I could clone anyone in the world, it would be Dr. H. I would clone him and have each of his clones go into a different medical specialty so that everyone could have a doctor like this. He’s the absolute best.

And, one last thing, I think I’m going to like NewYork-Presbyterian Hospital better than Beth Israel. Beth Israel is a fine hospital, but NYP feels nicer.