Granulation Tissue vs Residual Ovary

SF73

Hello sisters, 

I should probably update my profile so that I don't have to give my full medical history before asking a question. Please bear with me while I give a brief history. I had a hysterectomy in late June. Pathology report revealed an endometrioid type, endometrial cancer grade 2 (later downgraded to grade 1 by a second pathology team) and stage 2 (minimum invasion of the myometrial but some involvement of the cervix) Fallopian tubes were negative for cancer. Since I am 44 years old, the gyno oncologist did not remove my ovaries and for some reason no lymph nodes were sampled either. 3 months later in October I had a 6 cm mass on my right ovary. I immediately have a second surgery with the same surgeon and my ovaries, appendix and omentum were removed. Left ovary and appendix were fine, but there was microscopic spread to omentum and the mass on my right ovary was malignant and was thought to be recurrence of the original endometrial cancer though they could not rule out a simultaneous secondary cancer - ovarian cancer of the endometrioid histology type.

I have been on chemo (Carbo/Taxol) since then. Tolerating it well. I am also on Metformin and Megestrol (160 mg a day) My CA 125 levels are going down (started with 224 prior to the first chemo and now is down to 17) I had a CT scan after my third infusion. CT Scan showed no metastasis (lots of mention of unremarkable organs which is the best kind of compliment in a CT Scan ) but indicated "Ovoid soft tissue density along the right pelvic sidewall could reflect residual ovary versus blood products/granulation tissue related to interval surgery. Short-term surveillance is suggested given proximity to prior pelvic mass." This is exactly the area where my tumor was removed from and the area that has been hurting for the last month (Low grade pain. 2 out of 10. But recently the pain goes down to my leg a bit) My oncologist's team at the time I complained about the pain suggested that it could be neuropathy. I was hoping that would be the case but now it seems less likely.

My oncologist (the surgeon who performed both surgeries) is not too concerned and wants to wait 2 months to have another CT Scan. I don't feel it is proactive enough. I did a bit of research and asked for follicle-stimulating hormone, estradiol, and estrogen levels to be tested. If the residual ovary is producing any hormones we will be able to detect that. (though it may be too small to produce any hormones, so there is a high chance of false positives with these tests) Should I also be requesting a PET Scan instead of a CT Scan since PET Scan will be able to reveal the cellular level metabolic changes. Yes, PET Scan will expose me to more radiation but I don't know what new info we can learn from an additional CT Scan in two months. I also never experienced any menopause symptoms (my mother never had hot flashes either) I wonder if that means I still have estrogen in my body 2 months after the removal of my ovaries.

I am so discouraged at the moment. So far I kept a positive attitude. Lost 20 pounds since October to make sure my BMI is healthy (it is now 22.3 down from 26) and to reduce estrogen produced by fat cells (my body fat percentage down from 32% to 28%). I am exercising every day, eating well, drinking lots of water, sleeping as well as I can, and now I feel like no matter what I do I am doomed. What if I didn't have an optimal debulking surgery? This will expose me to all kinds of risks. I may have to have additional surgeries. Since I don't have any comorbidities I recover from surgeries easily but of course they are no picnics. I just made peace with our decision of keeping the ovaries during the initial surgery after reading this study (Rate of ovarian micrometastasis in endometrial cancer: Is ovarian preservation a reasonable option? : Apparently micrometastasis rates are 0.75% for grade 1 and 2.2% for grade 2) So what happened to me was rare. If I had two  simultaneous cancers that would also be rare. But rare things keep happening to me. Residual ovary syndrome - if that is the issue- is not very common either. I am going to see another medical oncologist to see what she would recommend since I have lost confidence in my medical team. Yesterday on the phone the nurse congratulated me for being a good advocate for myself and requesting these blood tests:) All I wanted to tell her was if they did their job well, I would not have to be. 

Did anyone have a similar experience? If you had any granulation tissue, did it cause any pain? What would you recommend I do? Did anyone have surgery (exploratory or otherwise) while on chemo? My blood counts are OK. I feel I can tolerate it during chemo but I of course don't want to take any unnecessary risk even though I desperately want whatever this ovoid soft tissue is gone.

takingcontrol58

Granulation questions

SF73,
I did not have any granulation tissue after my hysterectomy but wanted to comment.
I did have spots of cancer on my ovaries at the time of my hysterectomy but I was
originally diagnosed at Stage 3, Grade 3.

You indicate that during your first surgery, you did not have any lymph nodes removed
and had cancer on the cervix.

So at your second surgery, were lymph nodes removed and did you have your cervix removed
at the second surgery? Granulation after a hysterectomy occurs as a result of the vaginal cuff not
healing properly (this is where the cut is made to remove the cervix). Scar tissue starts to
form over an unhealed area.  Apparently they apply silver nitrate to cauterize the tissue.
If you just had your cervix removed at the second surgery, perhaps this is the issue. Did your 
doctor discuss this with you?  I don't know if this could be a lingering issue if you had your
cervix removed during your first surgery.  I would assume your oncologist would see if you
are healing well with a pelvic exam to rule this out. 

I would suggest you get an ultrasound rather than waiting 2 months for a CT scan to see if they can
identify anything more specific (without using radiation). This way you might get a better
idea of what is happening without waiting.  And it might be good to get a second opinion.

It is great news that your CA 125 is down to 17 and you CT show no metastases.
You might also want to test for HE4 which is a better marker for EC recurrence.

Also, you will always have estrogen, even in menopause, though at low levels. 
Estrogen is also produced by the adrenal glands,  fat tissue, the liver and the
ovaries.  The issue is your hormones need to be in balance. Estradiol, progesterone
and estrone. Estrogen actually protects the heart which is why we are higher risk
for heart disease in menopause.

It is not good to keep having more surgeries, as surgery initiates many of the processes
that cause cancer- angiogenisis (blood vessels form to heal the wound- blood vessels also
are what causes cancer cells to turn into tumors), inflammation and the removal of internal barriers.
So hopefully, with this second surgery, optimal debulking was finished from the first surgery.

Don't panic and say you are doomed.  You seem to be doing all the right things and your
CT scan looks good.  Stress is bad for your immune system.  Try to take things one day at
a time.

Takingcontrol58

 

SF73

thank you for responding, TakingControl

Sorry for the confusion. My cervix was removed during the initial hysterectomy. In the first surgery they removed the uterus, cervix, and both fallopian tubes. In the second surgery (ovaries, appendix, and omentum were removed) no lymph nodes were removed either. I guess it is because the CT Scan prior to the second surgery showed no enlargement of the lymph nodes. The follow up (after 3 chemos) also shows no issues at the lymph nodes. So I am not too upset about that.

I also read that the granulation tissue usually occurs at the vaginal cuff. Since that area is easier to access it is easier to assess what is going on with biopsies and treat it if necessary. In my case, the granulation tissue or the residual ovary (remnant ovary syndrome) is on the pelvic wall (where the pelvic mass was removed) which makes things trickier. It is funny you should mention ultrasound. While doing some research I ran into this link. A gynecologist from Mayo who has written a paper on remnant ovarian syndrome has a presentation (link here: www.endofound.org/video/pelvic-sidewall-surgery-for-ovarian-remnant-syndrome-endometriosis-rosanne-kho-md/383) and at the 5:17 minute mark she mentions Trans Vaginal Ultrasound being the most efficient imaging. I remember you mentioning that you don't get any CT scans anymore. Are you guys only checking the pelvic area? Is it as informative and comprehensive as the other scans? I LOVE the idea of not having any more CT Scans.  

I am not looking forward to yet another surgery. But the presentation from Mayo suggests hormonal treatment and radiation are not great options and excision is the best. I am definitely going to shop around for opinions. I just found out that the blood tests I have requested will be impacted by the steroids and megestrol acetate I am on. I of course had to find this myself Need to call them again on Monday to identify the best window to get the test. 

takingcontrol58

Ultrasounds

I get a pelvic ultrasound, transvaginal ultrasound (I had a 5cm metastatic tumor that came back on my
vaginal cuff/outer rectum and they can see the rectum with the transvaginal ultrasound) and I get 
an abdominal ultrasound( since I had metastases to my liver and spleen).  I get them every 3 months.
I am still being followed every 3 months even though it is past 3 years. My gynecological oncologist/
surgeon has a radiologist on staff that does the pelvic and transvaginal ultrasounds at every visit.
This radiologist specializes in gynecological cancers.

If the ultrasounds show something suspicious along with the blood tests, then I would consider another CT
scan. I had a CT prior to chemo, after 3 chemos, after the 6th chemo and a PET/CT 3 months later, when i
was NED. I had one additional CT which was one year from the first CT.  That is enough radiation for a 
lifetime.

So it sounds like your issue is more llikely tied to the remnant ovary syndrome (though I can't believe a 
surgeon could leave part of the ovary in your body during surgery).

I thought i was done with transvaginal ultrasounds after a hysterectomy, but I guess not.

Definitely go for the ultrasound so you'll know what is going on, then can decide how to proceed.

Unfortunately, you have to be in control of your own health. Hence, my username. 

Takingcontrol58

 

SF73

Yes, I am having a hard time

thinking that a part of potentially malignant ovary tissue might be left behind. I think that is why I feel doomed. Keeping my fingers crossed that it is the granulation tissue - my body overdoing the healing. But if that was the case, why would it hurt? It is really hard to keep a positive attitude. 

Thanks for letting us know when you started relying on the ultrasounds. I think it makes a ton of sense. 

MoeKay

Independent Second Pathology Review

Hi SF73,

If I were in your situation, I would want to get an independent second pathology review at another institution.  I know you said that a second pathology team downgraded your case from 2 to 1, but it sounded to me like this was done at the same hospital after your first surgery??  In light of your need for a second surgery so soon after the first, I would want to have an independent evaluation of all tissue from both surgeries.  

What has me puzzled is that I'm assuming your surgeon would have examined your ovaries at the time of your first surgery and concluded that they looked normal before deciding not to remove them.  Yet only a few short months later, you had a 6 cm. tumor on your right ovary.  I'm not a medical professional, but the rapid growth of the tumor on your ovary seems somewhat inconsistent with your grade 1 pathology determination.  In any event, review by another institution specializing in second pathology reviews of gynecologic cancers might also be able to confirm whether your case involves two primary cancers, endometrial and ovarian, or an ovarian metastasis of your endometrial cancer.  I think it's always better to be sure of what you're dealing with to make sure the treatment is appropriate. 

I had my pathology reviewed by a second institution after my surgery and I found it to be very reassuring to know that nothing was overlooked. 

Wishing you all the best,

MoeKay

SF73

Hi MoeKay

Thank you so much for your thoughtful post.  

The first pathology report was done at CPMC and they themselves got a second review from Stanford and their comments are captured in the pathology report. I think it is standard procedure for them. So when we wanted to get a second opinion (since we were also surprised by my the 6 cm tumor growth in 3 months where the ultrasounds prior to the surgery and actual pictures of my ovaries the surgeon took during the surgery showed nothing at all) we wanted an independent institution and picked UCSF. Neither team can decide whether it is a recurrence of the endometrial with endometrioid type or ovarian cancer with endometrioid type. Apparently under the microscope they look pretty similar. They both agree on the histology and low grade of the cancer (UCSF thinks it is grade 1). In the second pathology report they also stained the blocks to understand the hormonal receptors which was missing in the first report. Only 25% PR positive and 50% ER positive. Not great. But still motivates me to be on Megestrol. So in addition to getting some reassurance I learned something new.

After all three consultations at CPMC, UCSF, and Stanford, oncologists ensured me that Carbo/Taxol is the best way to go - they said they did not need to know whether it is ovarian- and if it is ovarian cancer actually the response rate is even better with Carbo/Taxol . 

I can use Grand Rounds and ask for an opinion from another institution on the east coast. But at the moment I am more interested in understanding what is happening on my pelvic wall.