Radiation treatment after hysterectomy

Orchid, welcome.  There are women here who have gone through the same thing that you have gone through, and many can offer help and support, and relate our own experiences.

I'm assuming that your doctor is recommending rinternal adiation treatment of the vaginal cuff.  This is commonly done to prevent local recurrence.  I myself did not have that kind of radiation treatement, but many on here who have, have said it was easy.  It definitely does reduce the risk of recurrence.  Sometimes chemo is also used.  There are no less difficult but effective treatments that I know of, but there is a woman on here who, in addition to having had the standard treatments, also has used non-standard , complementary treatments.  I'm sure she will chime in, but the point is, they are an add on, not an instead of.

Have you gone for an opinion at a major cancer center that treats a lot of uterine cancer?  That can be very useful. 

I had internal beam about 2 years ago, as well as chemo. After chemo radiation was not bad at all. I have been fortunate and have had no problems except a hemorrhoid from the diarrhea I had during radiation. I was 3a, grade 2. 

I had external, and chemo.  The fact is, you do what you have to do, in the hopes that it won't come back.  I would worry more about doing the right thing to prevent a recurrence, rather than worry about the treatments damaging healthy tissue.  A second opinion at a major cancer center is a good idea.

oldbeauty said:

Hi Orchid.  Yes, the first was diagnosed in 2012 by fine needle biopsy of a tumor in a para-aortic lymph node (an area where nodes are typically harvested in one's original surgery, with scattered lesions in both lungs that could not be biopsied but were "suspicious."  In addition to radiation I was placed on high dose progesterone.  The second time, in 2016, scattered lesions again appeared in my lungs (I had been clear of disease for some years), and my oncologist felt it was prudent to declare them malignant and he recommended chemo.  This latest nodule was found in Decemberer 2018 at 5mm.  Over a year later, it is now 7.5 mm.  Very slow growing if it is malignant.  Too small to find to biopsy, so I await another scan in 3 months.  Best wishes, Oldbeauty

OldBeauty,

How were these recurrances found?  Did you have symtpoms which prompted a CT? 

One more question, did you have any nodes taken during the inital surgery - hysterectomy?

Thanks so much. 

Denise66 said:

OldBeauty,

OldBeauty,

How were these recurrances found?  Did you have symtpoms which prompted a CT? 

One more question, did you have any nodes taken during the inital surgery - hysterectomy?

Thanks so much. 

In 2010, 5 years after first diagnosis, I experienced 2 episodes of sudden onset excruciating pain that sent me to the emergency room.  I failed to follow up on these due to other stresses in my life at the time.  In due course, I began to have pain in my lower back and leg weakness.  When it persisted despite efforts like accupuncture and Advil, etc., I requested imaging be done because I was worried about cancer (despite being told in 2005 I was cured).  That showed the paraaortic node with cancer and the lesions in my lungs.  The fine needle biopsy triggered terrible pain which the doctor reported was because the tumor was pressing on a nerve complex related to where I reported the lower back and leg pain.  A few days later I experienced the unbearable pain and this time was admitted to the hopital for pain management.  In addition to radiation on the paraaortic node (a different spot than the post-hysterectomy radiation), I got high dose progesterone (hormone) therapy.  These worked togethr to clear me of disease.  Then, in late 2016, at the gym I urinated blood and that persisted for half the day.  That prompted a CT that showed scattered small lesions in my lungs.  Why I urinated blood was never explained, even with exam by urological oncologist.  Given my history, my doctor recommended chemo.  I was too frightened to wait for a rescan in 3 months to see if these spots grew.  Then, in December 2018, with no symptoms but with a doctor who regarded patient peace of mind as reason enough to justify a scan, a CT showed this single 5mm nodule.  This time, I have the courage to wait.  I want a definitive diagnosis via tissue analysis before any new treatment.  So, one year later, we still have just one nodule that is now 7 mm, still too small to analyze via CT and too small to find with a needle to biopsy.  I am hopeful it is benign, but I am more encouraged that time is on my side for new drugs or other treatments to be developed to help me as time goes on.  Like MABound says, there are many approaches.  Progesterone helped me, radiation helped me, chemo helped and now I am taking Metformin, which my doctor is willing to believe could be a factor in why this nodule is behaving the way it is (very slow growth).  I also, since 2012, have become a gym rat and am committed to eating a healthful diet.  I never was obese but I was sedentary.  And, I also have been seeing an integrative physician for the last year who put together a regimen of vitamins, minerals and other supplements.  I don't know if theses are making any difference but I am fortunate to be able to afford them so I take them.

I would just say it's really not possible to project what will happen to any one individual.  We are each a statistic of one, as we like to say around here.  Healthy diet and exercise are, at a minimum, a good idea since this is a cancer that feeds off estrogen, which is contained in fatty tissue.  If testing revealed that your tumor had adequate progesterone positive status, then perhaps hormone therapy is useful.  If you can get a doctor to write a prescription for Metformin (I am not diabetic or pre-diabetic; I worked with a sympathetic doctor to create an argument for presenting with metabolic syndrome) then maybe that will help.  The best advice I can give is not to let your guard down.  This is a sneaky and persistent disease.  Because yours is so early stage, perhaps it is true that the surgery got all the cancer cells and you are in fact cured.  But you should be sure you got the gold standard of care.  That is, adequate collection of lymph nodes for analysis, investigation of whether there was evidence of lymph vascular invasion and thorough pathological analysis.  I did not have the gold standard approach in the first instance, and the non-specific external radiation first time around did not prevent my first recurrence.  You just never know.  But you ought to inform yourself about the disease and what are the approaches to treatment and then decided what's best.  A second opinion before accepting any treatment is a good idea, if you can afford it with or without insurance.  Myself, I am committed to capturing tissue for genomic and genetic analysis before going forward with any further treatment.  I learned about all these things from reading on this board for the last 7 years.

Best wishes on your personal journey.  Oldbeauty

Hi Orchid65, the first thing that jumped out at me was your tumor grading.  I'm wondering why you're being told your tumor was grade 2-3.  Hopefully, you were able to get some more information on your case at your appointment at Stanford yesterday.  After hysterectomy, I believe you should have been given a definitive grade, unless I'm missing something.  Perhaps a second pathology review is in order at this point.  I was diagnosed with stage 1c (under the old staging system, now stage 1b), grade 2, endometrial adenocarcinoma in 1999, and was treated with internal and external radiation.  I had a number of other risk factors for recurrence, not reflected in the staging system, some of which were mentioned in MABound's above post.  Your stage 1b indicates that your tumor penetrated at least 50% of the myometrium.  In my case, I had approximately 80% myometrial invasion. 

I believe that in order to make a fully-informed decision on how to proceed, you need to have a clear picture of all of the pertinent details of your case.

Wishing you the best. 

Orchid65 said:

Questions on your grading

I did ask the doctor at Stanford about the 2-3 grading.  It had come from the two pathology reports I had received.  One from the Hysteroscopy, where they first found cancer (grade 3), and one from the hysterectomy (grade 2).  The Stanford doctor said at Stanford they would have reviewed the two reports side by side and then determined the grade.  I asked the doctor if Stanford could re-review the pathology reports.  However, I did not ask the cost and if insurance would cover the reassesment.  Does anyone know how much this would cost and if insurance would cover it?  Or should I cancel this reassessment?

Orchid65, I never had to pay anything when I had my slides sent to the other facility for a second pathology review.  I suspect that Stanford would either know whether your insurance would pay for the review, or could call the insurance company and find out before performing their review.  In my case, there was an issue with staging (my gyn-onc's clinical staging versus the first pathologist's staging), so I found it extremely comforting to have a second pathologist at another institution review everything.  In your case, the second pathology review would look at both the specimens from the hysteroscopy and hysterectomy.  It's up to you whether you ask for a second pathology review, but there's a significant difference between grade 2 and grade 3, so I would not be comfortable without a definitive answer on the issue.  But that's just me, of course.  It's also noteworthy that pathologists sometimes have differences in their assessments of the same specimen, and pathology errors can and do happen. 

Best of luck. 

Near the neck is the lower part of the fundus. In your case, it's the lymphovascular invasion, 88% penetration, and those grade 2-3 cells that are probably why radiation is being recommended to you. When you learn about radiation, it's scary, but it's like those drug commercials on TV...all the potentials sound awful, but it doesn't mean you'll have all or even any of them. Some people breeze through treatment and others are adversely impacted and struggle. A lot depends on what you bring to the table (overall health or other health issues).

Having radiation in your circumstances makes sense, but you have legitimate concerns, so sometimes getting an additional opinion or opinions can really help you feel like you are making the right decision for yourself. Your stage is early, but those other factors are concerning. It's impossible to predict how you'd get through radiation and if it would be worh the risk because having it is not a guarantee. Studies just show that it would improve your odds. Whatever you decide to do, it's not the end of what you need or can do to protect yourself as time goes on. 

Remember, none of us here are doctors. We can only give you the benefit of what we have learned or experienced. It isn't exactly fair, but the final decision is going to have to be yours and should be one that you can live with and not regret. You are doing the right thing by making the effort to get input and expertise from multiple sources.