uterine cancer and best choices

RubyG

Hi. A friend of mine has Stage 1C Grade 2 uterine cancer. She doesn't have computer access and, now, following her hysterectomy, she has questions about her options which I said I'd post for her to get some info from other survivors with similar cancer/experience.

After the hysterectomy the pathology came back saying that the cancer was 'just past halfway into the uterine wall,' and that the cancer cells had penetrated blood vessels. She is trying to decide whether or not to do the surgery to have lymph nodes removed from her abdomen and groin and analyzed. She has concerns about the effects/impact of lymph node removal and is trying to weigh them against the usefulness/importance of the info that they will yield. Here are her questions:

For women who've done this procedure--what have been the side effects you've experienced following the lymph node removal?

What's known (or has been experienced by survivors out there) about the long-term effects of lymph node removal?

What are the odds of re-occurance of the cancer elsewhere when cells have penetrated blood vessels? Any statistics or studies on this would be great to know about.

Finally--given what is known, is it better to wait for re-occurance vs. removing 20% of the lymph nodes from her abdomen/groin?

Thanks to any and all who can provide info, share experience, or point me to studies, sites or stats.

tlva

Hi,
Well I don't know how much help this will be, but I'll tell you about me.

I had 4 nodes removed during my hysterectomy even though the doctors said that they had a very hard time seeing any evidence of cancer under gross examination of the uterus while I was still on the table. They also examined and palpated my para aortic lymph nodes while I was in surgery for enlargement. I guess that would have suggested involvement if they were enlarged. My pelvic nodes were negative and I was staged at 2B because even though the 2 tumors in my uterus were only 0.4 cm...microscopic...I did have "superficial stromal invasion" on my cervix. My Grade was 1...95% of the cells appear normal.

I have not had any side effects from the node removal. But I did, at my choice, have external and internal radiation because cervical involvement is closer to the blood supply and the chance for recurrence on the upper third of the vagina is slightly elevated.

My favorite site for research is the M.D. Anderson Cancer Center in Houston. Their site is great and very easy to navigate.

What I do know, is that a recurrence is harder to treat than an initial diagnosis and that endometrial cancer is resistant to chemotherapy. If it were me, I'd roll the dice on side effects and deal with the known rather than the unknown about a POSSIBLE side effect. If her doctor is recommending the surgery, that would be enough for me. It could help decide if she needs further treatment or could really provide a great deal of peace for her. Grade 2 cells might have the doctor wanting to be sure the nodes are clear.

Try to stay with high profile sites...there is a lot of junk out there! Sloan Kettering is another good site and the ACS has information too. But know that every woman's case is different so further treatment is largely based on the inital pathology. Sounds like she has a good doctor to me who is looking out for her!

Give her my best wishes and hugs and prayers!

Tammy

amelle

Hi, I really feel for your friend. I thought she might be interested to hear that I was terrified of lymph node removal and very resistant to it, but had absolutely no ill effects. It was done by an excellent surgeon who did it at thte time of my hysterectomy and kept the no. of nodes he removed to a minimum. (There are some studies which show that removing more nodes leads to a more favorable outcome when they're positive, so keeping them to a minimum is not necessarily what she should fight for.)
I think she's asking great questions, but one which she might add is what would be the difference in treatment recommendation given what is known now and if she turned out to have positive nodes. For me personally, it was important to find out that I had positive nodes. I probably would have been less agressive about treatment if I hadn't had that information.

When I tried to research all these issues - more than a year ago - I found the information on endometrial cancer very inconclusive and contradictory. The fact that her cancer penetrated nore than halfway into her uterus and that there's vascular permeation does, I believe, indicate some danger and possible lymph node involvement. On the positive side, the fact that it's grade 2, not 3, and that they didn't find it in other organs is very positive.
Hope this helps.

agt412

tlva said:

Hi,
Well I don't know how much help this will be, but I'll tell you about me.

I had 4 nodes removed during my hysterectomy even though the doctors said that they had a very hard time seeing any evidence of cancer under gross examination of the uterus while I was still on the table. They also examined and palpated my para aortic lymph nodes while I was in surgery for enlargement. I guess that would have suggested involvement if they were enlarged. My pelvic nodes were negative and I was staged at 2B because even though the 2 tumors in my uterus were only 0.4 cm...microscopic...I did have "superficial stromal invasion" on my cervix. My Grade was 1...95% of the cells appear normal.

I have not had any side effects from the node removal. But I did, at my choice, have external and internal radiation because cervical involvement is closer to the blood supply and the chance for recurrence on the upper third of the vagina is slightly elevated.

My favorite site for research is the M.D. Anderson Cancer Center in Houston. Their site is great and very easy to navigate.

What I do know, is that a recurrence is harder to treat than an initial diagnosis and that endometrial cancer is resistant to chemotherapy. If it were me, I'd roll the dice on side effects and deal with the known rather than the unknown about a POSSIBLE side effect. If her doctor is recommending the surgery, that would be enough for me. It could help decide if she needs further treatment or could really provide a great deal of peace for her. Grade 2 cells might have the doctor wanting to be sure the nodes are clear.

Try to stay with high profile sites...there is a lot of junk out there! Sloan Kettering is another good site and the ACS has information too. But know that every woman's case is different so further treatment is largely based on the inital pathology. Sounds like she has a good doctor to me who is looking out for her!

Give her my best wishes and hugs and prayers!

Tammy

My mom was diagnosed with stage 3b uterine cancer. Her CA-125 was never higher than 38. 3 out of 9 lymph nodes were positive. They orginally told her she would have to have 6 chemo tx's and then a month of radiation. Since her CA-125 dropped so low, right now down to 7, they cut the chemo to 3 tx's. Now they want her to have the radiation. She is not taking the side effect of being so tired very well. She's an extremely active 74 year old. Does anyone have info on how important it is to have both chemo and radiation? Which is more effective? How bad are the side effects. Thank you

groundeffect

I had lymph nodes removed during my hysterectomy, and have had no noticeable effect from their removal. I did have a bit of numbness in my upper left leg that may have been caused by it, but I don't notice it now at all.

I've liked to look at the Johns Hopkins website for information; the National Institutes for Health (NIH) site has statistics galore, but I'm sure you'll have to dig through other sites to find statistics for that type of recurrence.

Jan1948

Hi Ruby! I haven't been on this site for a month and now wish I would have so that I could reply to your message earlier. I, too, had Stage 1C grade 2 uterine cancer with a 53% penetration into the outer wall. The cancer was not discovered until after my hysterectomy last Sept. when the pathology report came back the night before I was to be discharged from the hospital. Due to the 53% penetration, radiation was recommended, however, I questioned why should I have radiation if the lymph nodes were clear. After recuperation, I had a lymph node dissection in early November as an outpatient. I missed one week of work and was more sore from that than the hysterectomy. Four small incisions were made in my abodomen from which 13 lymph nodes were removed. After a long agnozing five-day wait, the results were clear! I was so relieved! A week later, the gyn/oncologist called me to recommend radiation as a preventive measure. After weighing the pros and cons, I decided on internal radiation (cessium implant)in which an applicator is inserted into the vagina and I was on my back for 105 hours in the hospital while receiving it in late January. It was not pleasant, but hopefully, added insurance that the CA will not return. I opted, and the doctors concurred, to not receive external radiation since I have the beginning stages of lymphedema in my left leg. The removal of nodes has (and will probably) cause a bit more swelling, especially in hot weather, but I'd rather have that than CA. I now go for pap smears of my vagina every three months. It will soon be one year of being cancer free! I hope this will help your friend. If she has more questions, please ask. Good luck to her -- it's great that she has a friend like you. Friends and family are so important! God Bless!

mjann

I have had lymph node removal at the time of hyst and recommend it as it is the only way you can get a good diagnosis for future treatment, if needed. I have some stiffness in my groin and slightly limited range of motion there, that is all. I have some scar tissue underneath the skin from the lymph removal so the areas are a bit hard to the touch. The effects of this are minor compared to the information they can yield about future treatment so I'd say go for it so you can know one way or the other.