I feel like a scared little kid. The gyn/onc told me that I had vascular space invasion, small tumors on the blood vessels of my uterus. I keep thinking that this must mean I have cancerous cells running through my blood stream, and then I think how will radiation help that. The doc says that the rad will limit the chance of recurrance, but I just am overwhelmed. How could the only problem be in my uterus then? I can't find much info on the net about venous vascular space invasion. Does anone have any advise and has anyone had chemo instead of radition to treat this? I keep thinking the chemo will cover more areas. Any advise or words to restore me to sanity will be appreciated
I think what you may be talking about is lymphovascular space invasion (sometimes also referred to as lymph-vascular space involvement) or LVSI. I had surgical stage 1C, grade 2 endometrial cancer and I also had LVSI. If that's what you have, it's not tumors in the blood vessels of the uterus, but tumor cells found on pathology to be in the blood and lymph vessels of the uterus.
While LVSI does increase your risk of recurrence to some degree (to a greater or lesser extent depending on the extent of the LVSI), this does not mean that your tumor has progressed beyond the uterus. My LVSI is stated on my pathology report as being "extensive."
You might want to determine the extent of your LVSI, as sometimes it may be that only a small number of tumor cells were found in the blood or lymph vessels and in that case, it would not as negative of a finding as it was in my case. Also, LVSI is not as much of a negative prognostic factor as having tumor cells found in the lymph nodes. While chemotherapy for earlier-stage endometrial cancer is becoming more common in recent years than in the past, I was treated in 1999 and had only internal and external radiation in addition to a radical hysterectomy, BSO, and pelvic and para-aortic lymphadenectomy.
Other women who had LVSI who were treated more recently or are currrently undergoing treatment may be able to tell you about clinical trials where they received chemo.
Please, everybody, understand I am not a doctor, this is not medical advice, the decisions I made are for me alone. I don't in anyway wish to give anyone second thoughts about their treatment decisions.
I am so sorry for what you are going through, and I think you may be my hystersister twin. At least a fraternal twin, our situations are close. I had the same concerns you did, and am undergoing chemotherapy instead of radiation.
I would be stage 1B grade 2, except that I had some free floating cancer cells found in the peritoneal wash during surgery. There is a lot of controversy about what a positive peritoneal wash mean, when it is the only extra-uterine finding. The majority view is that it does not worsen prognosis, and especially with my 45 negative nodes, I believe that. So I think of myself as a 1B. They also found some focal points of possible grade 3, but my p53 and estrogen receptor status was good, and that mitigated the situation. (That would have been my 4th upgrade since diagnosis--I said "Quit looking, or you are going to decide I died on the table." My tumor was also large (8 cm) and all over the uterine wall, so many jumping off points. I had uterine lymph rather than vascular invasion.
My case went tumor board and they gave the standard advice: pelvic radiation and then Megace.
I had been poring through the medical literature 10 hours a day, including 3 excellent review articles, and the majority conclusion was radiation definitely decreases local recurrence, there is no overall survival advantage, local recurrence is treatable, distant recurrence has very low survival (about 20%) Some authors felt they did not get as good results with radiation for local recurrence as they did with radiation for prevention. Some felt they got better results because they knew what they were aiming at (and radiation cannot be used again.)
Recurrence is split up approximately 50/50 between local and distant. Such information as there is does not seem to think chemo prevents local recurrence. My surgeon and my reading indicated I have about a 25% chance of recurrence, half local, half distant.
I wanted to fight distant recurrence. I also felt more comfortable with the risks of chemotherapy, than I did with the risks of radiation.
I totally agree that the great majority of women do well with radiation, have few long term side effects, but I have seen some bad outcomes, and feel I am at higher than average risk for long term complications.
For one thing, my surgeon believes in removing every lymph node she can get (has anyone else had 45 taken?)and that already puts me at risk for lower extremity and genital lymphedema. My mom died last year, and was 24 hour total care for a year before that. She had severe lymphedema (not due to cancer or radiation.) Her legs were like tree trunks, her skin broke down, hygiene was a nightmare. Even when women do get this side effect, it is almost never as bad as my mother's situation, but our personal experiences definitely play a role in our decisions.
Radiation can also weaken bones, and I already have low bone density for my age. I have seen a number of women in my family crippled by osteoporosis, and I fear it almost as much as cancer. Again, not due to radiaiton, and a personal experience.
I discussed all this with my gyn/onc surgeon, an onc/radiologist, and my med/onc, and all three agreed that chemotherapy was a reasonable option, with the radiologist the least enthusiastic, and the med/onc very enthusiastic. When you are a hammer, you see problems as nails.
This direction is unproven. There are a few small, promising studies with chemo, and there are big clinical trials going on combining radiation and chemo.
I make this sound like it was all very rationale and sane. Bellaroma, I thought I was going nuts when I was making the treatment decision. I really, physically, could've gone back to work 3 weeks after surgery, but took another 2 weeks off because I kept bursting into tears. I thought I would never have another peaceful moment in my life. The surgeon suggested I see a psychiatrist. The treatment decision was the worst part of having cancer for me. I had a rotten weekend after my second chemo, and that was nothing, nothing, compared to the decision.
I am now completely at peace with it. (Well, I'm still nervous about any long term problems from chemo, but not too nervous, and I do believe the chemo is necessary.)
This is for me, just me, sisters. I am happy to discuss this, but am not advising it. I know others will be along in a bit to stress the merits of radiation. Moekay will tell you about GOG 99. My guess is down the road, after the big studies have been done, both radiation and chemo will be advised in some cases. The death rate from endometrial cancer has been on the rise, and we are finally getting some much needed attention.
Bellaroma, you will find the right decision for you. I hope your doctors are as open and supportive as mine have been. My surgeon had breast cancer five years ago, told me "my psychopathology was different then yours. They had to pull me off treatment before I killed myself." She had two small kids at home. If I did I think I would demand both modes, anything to be there till they grew up. I have a much loved DH, who says 'hey, what about me?"
I am sorry this is so long. Everybody on the board has been wonderful to me, but I have felt a little isolated at times because I am an odd duck, and it feels good to come out of the closet with my story. I wasn't sure if I should talk about it.
Thanks for the opportunity, Bellaroma, and know you have everyone's love whatever you chose to do.
of course you should talk about it! Whatever your decisions, they are YOUR decisions. ...and it certainly seems like they are INFORMED decisions!
I can't offer you any medical advice, but I agree that you should find out everything you can about your options, and weigh the pros and cons of each treatment.......and FULLY discuss this with your oncologist. And remember, you have to do what's right for YOU. If you arent' happy with what your doctor is telling you, by all means, go for another opinion..and another one if you need to!
I'm not really disagreeing with the doc, I just don't know. I have moderate disc degeneration in my back from the acromegaly I had before, acromegaly is a growth hormone secreting tumor in your pituatry glnd. This is the cause for the cancer also. My last MRI on my back has it covered with what appears to be cysts. The pit tumor caused all my hormones to be severly off for years before discovery. Bone growth and tumors are par for the course with that disease. So I'm scared about recurrence of the cancer and/or cancer somewhere else and damage from the radiation.
I do not know if the doctor meant the lymph-vascular invasion, becuase what he said was that I had "vascular space invasion, which meant that the blood vessels in my uterus had several small tumors on it"
Do you have the links on the chemo trials. I just want to be aware of all options, it's my way of getting some control over the uncontrolable
I'm worried that their could be things wrong elsewhere. I guess the real bottom-line is that I am having one heck of a real cancerhead day. I'm sorry for my ranting, the chance are that I'll be fine, but I'm just having a messed up mind day. Thanks all for listening.
you'll find lots of information about endometrial cancer, including availabe clinical trials. I am not sure if you are looking for a trial that you might consider joining, or the results of trials. I think you will find a lot that you will be of interest. Unfortunately the final word on chemo vs radiation vs chemo + radiation won't be in time for the decisions we need to make.
Bella, I've told you before that I'm the same diagnosis as you, with a 1B, 2 endo ca. Monday, I go for my first visit to the rad. onc. Like you, I also have degenerative joint disease, from rheum. and osteo arthritis.
Like Michelle, I am concerned about lymphedema and long term effects. I need to have knee and foot surgery after I get over all this cancer business, due to arthritic problems which keep me from walking without crutches, cane or wheelchair. I think it would be heaven to wear prissy shoes again, and to walk anywhere I wanted without limping and pain. But I don't want the radiation to interfere with my getting my leg fixed.
Here's a question: If they take out so many of the lymph nodes, how the heck does that part of the body continue to filter the blood? I only had one lymph node removed, because the gyn/onc/surgeon "figured" I was a 1A,1 before surgery. If only it had turned out that I was.
I am so confused. I am wondering too, does radiation just hit those local areas, and if so, then what about tumor cells that are already somewhere else? It seems like all the bases aren't covered, with just radiation.
I sometimes think they wait to see if you get a distant recurrence, and deal with it then. I say, find new ways to deal with it all in a more preventive way, after the surgery. My mom had to wait til her kidney cancer metastisized to her lungs before the doctor did ANY other treatment other than removing the kidney! Then, he did chemo. (Amazingly, she survived and it's ten yrs. later, and she's 76! )
My surgeon told me that lymphedema is not common after pelvic lymphadnectomy, even with the high number I had removed, because there are other lymph chains in the area (like the inguinal and the para-aortic) that can take over. Still, women like me are at increased risk, and would be more so with radiation.
With masectomy there is a larger risk because there are fewer lymph nodes doing the work. You probably know they use this technique of using a dye to idenify a sentinel node that drains the area so they can just remove that one. That's available now for breast, and I know they are working on it for uterus, but I think it is still considered experimental for uterus.
The sisters are right - vascular space invasion is the same as lymph-vascular space invasion (except the latter includes the lymph vessels as well as the blood vessels).
It means that on a microscopic level the tumour cells have grown into the small blood vessels and lymph vessels of the uterus. Although it does not mean the tumour is circulating around your blood stream to all parts of your body, it does put you at increased risk of metastatic disease compared to someone with no VSI. I also have LVSI.
You can think of tumour spread as a 'cannon-ball' effect, that is, one or two little cells break off from the other cells growing in a little clump in the blood vessel. This one cell can travel in the blood (or lymph) stream and can potentially lodge in a lymph node or in local tissues, or in the lung or liver etc. BUT the majority of the time the cancer cell is probably mopped up by the immune system and destroyed. SOmetimes no cells break off even if they are growing into the vessels.
The local pelvic radiation is designed to kill any tumour cells which may be lying in blood vessels outside the uterus or have lodged in local tissues because this is the likely place any extra tumour cells will be. Although it is a theoretical possibility that there may be one or two tumour cells outside this field the risk is relatively low. Chemotherapy may be used to kill these cells that radiation cannot get to because they lie out of the radiation field.
All of this is so much to take in, and it is terrible that you have to face it too. Speak with your doctor, and hopefully he/she can further explain and help guide you into making a treatment decision.