Contamination from laparoscopic hysterectomy - Anyone else have this?

Mercorby

Hi,

My 2nd occurrence was over almost 6 years ago. It was a tumor in my rectus abdominis muscle as a result of contamination in one of my scars from the laparoscopic hysterectomy. It occurred 6 months after chemo for the 1st recurrence (in 2 pelvic lymph nodes - which was found about a year and a half after the original hysterectomy). The tumor in my muscle was treated with brachytherapy (radiation sent through rods in my stomach - painful and traumatic). After that treatment, I was put on the Ibrance/anastrozole regimen. It's been over 5.5 years of remission.

The current gyn onc says that cancer in the pelvic lymph nodes was probably minimal residual disease, but I wonder why the contamination is not. The doctors say that they don't know if the cancer could pop up in one of the other incision scars.

If you had this, what did your doctors tell you? (Er+ Pr+ Her2-, had the whole molecular work up, the plan is for me to stay on something or other for the rest of my life.)

Thanks.

Corby

NoTimeForCancer

Mercoby, personally I had never heard of this but I suspect there is more of it out there. Heck, it was determined years ago that morcellation hysterectomies actually spread cancer throughout the body and why they are not preformed anymore.

In my opinion, that genetic/molecular work up is going to help more people with treatment, and is a step in the right direction.

Mercorby

Thank you. It is a rare occurrence. I've had all the molecular testing done and am on Ibrance and anastrozole. The issue is whether I can take a break from the current regimen - how likely is the contamination going to happen again? All the forums are so frustrating for me because I never hear of people either getting my treatment regimen or having this contamination issue. The treatment worked, but it was a toughie to go through. For the Ibrance/anastrozole, I hang out in the mbc forums, so I can learn more about side effects and future treatments. But the contamination is in a class by itself. So, I just threw it out there incase anybody else had experienced it.

PeachRibbonWarrior

Hello! I also had a recurrent malignant mass to my rectus abdominis approximately 2.5 years after my hysterectomy. I had been complaining of issues for approximately a year before it was discovered. Had it not been found when it was, I may very well have died, or at least that is how it was put at the time (about 7 years ago). I was then treated with more chemo & radiation. After that, I was on anastrozole for many years, with minor recurrences popping up here & there.

I did not have any side effects of anastrozole myself. I have been off for just over a year now. Unfortunately the metastasis went a little crazy last year, invading the colon, liver, lungs, and leaving a suspicious lymph node in the middle of my rectus abdominis, so we needed to get more aggressive.

I don't want to scare you with the last year of my life. My situation turned out to be pretty aggressive from the beginning, going from stage 1 to stage 3 in just under 2 months. I'm not the typical patient, and have not followed the normal statistics for most of my treatment. The only one that was normal was the anastrozole.

I want to look more into this contamination as I had not heard of it before seeing your post. Thank you for sharing, and I hope the anastrozole works for you!

Mercorby

https://csn.cancer.org/discussion/comment/1707045#Comment_1707045

Thank you so much for sharing your journey. Do you have hormonal cancer? Have you had your cancer's molecular structure analyzed? How are you being treated aggressively? Are you using any complementary medicines or other non-western treatments?

The contamination used to be more common years and years ago, but now they do more washes, and that usually works. Still, that the chemo didn't kill it meant that it is a very aggressive cancer.

They found the tumor 6 months after chemo. It grew pretty fast (it wasn't even visible at the three-month scan before), so they did brachytherapy on it. That was the most traumatic experience of all my cancer treatments. But they got it and now it's gone. The drs feel that this cancer will keep recurring and they will keep treating it. That's why I am still on the Ibrance and the anastrozole. I am also getting pet/ct scans every six months. So far, I have been NED for over 5 and a half years. But I already know what the next treatment will be when this regimen stops working. I feel good and live a fairly active life (on two masters swim teams and one masters synchronized swim team), but it's hard to always be waiting for the other shoe to drop.

My other issue is that I don't know other endometrial cancer patients on my regimen. I'd like to compare notes. The metastatic breast cancer patients are usually in much worse shape than I ever was, so it's hard to compare. I am not sure that I still need to be on these meds, but I am afraid to stop. It doesn't help that the gyn/onc and the hemo/onc don't really agree on keeping me on the treatment and the six-month scans. I think these drugs don't have a long enough history, so nobody really knows. I just stay on top of the latest research and ask my drs lots of questions. Knowledge is power!

Fridays Child

This is very interesting. My recurrence was found 6 years after my original surgery which was followed by brachytherapy (not the kind you had). They've never said anything about contamination.

Following chemo/radiation, I took letrozole for about a year, at which time they switched me to megace. I've been on that almost four years now. When I asked how long I would be on it (having heard of different drugs you could only take for X years), he said, "Until it stops working." The med oncologist thinks it's dead scar tissue but the gyn oncologist talks like he expects it to come back at some point. Currently I see a gyn or gyn onc every 6 months and the med onc once a year, with a CT scan once a year.

NoTimeForCancer

Hello warriors, I have been thinking of this topic. I remember when it was coming time for surgery my mother was very worried, and made me verify, that they NOT perform morcellation. It was chopping up the uterus in pieces and it was actually spreading cancer in the body. (I think this is what Mercoby you were talking about)

While my gyn onc said 'no' and no one does that anymore, I guess we should never assume and be sure to ask anything you want.