Radiation treatment after hysterectomy

Orchid65

I just had a robotic-assisted laproscopic hysterectomy 3 weeks ago.  I was diagnosed with Stage 1B Grade 2-3 Endometrial Adenocarcinoma.  My doctor recommended I have radiation therapy to prevent the recurrence of cancer.  Is the radiation necessary?  Does radiation damage healthy cells?  Has anyone had this diagnosis, but not have the radiation therapy and survived?  Are there alternative treatments that might prevent the recurrence of cancer that I can use?

zsazsa1

Orchid, welcome.  There are

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. 

Orchid65

zsazsa1 said:

Orchid, welcome.  There are

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. 

Radiation treatment after hysterectomy

Hi zsazsa1,

 

Thanks for your comments.  My aunt tells me that radiation and chemo are really hard on the body.  I'm worried that the radiation may damage my healthy cells.  Do you know of the pros and cons of internal radiation treatment of the vaginal cuff vs. external beam radiation therapy?  My oncologist recommended External Beam Radiation Therapy, but he said he would let the Radiation Oncologist decide which one to use.  During the surgery removing the uterus, the vagina did tear.  Would it have to heal before radiation could be applied?

barnyardgal

I had internal beam about 2

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. 

LisaPizza

Orchid65 said:

Radiation treatment after hysterectomy

Hi zsazsa1,

 

Thanks for your comments.  My aunt tells me that radiation and chemo are really hard on the body.  I'm worried that the radiation may damage my healthy cells.  Do you know of the pros and cons of internal radiation treatment of the vaginal cuff vs. external beam radiation therapy?  My oncologist recommended External Beam Radiation Therapy, but he said he would let the Radiation Oncologist decide which one to use.  During the surgery removing the uterus, the vagina did tear.  Would it have to heal before radiation could be applied?

I'm sure a tear would have to

I'm sure a tear would have to heal, just as the surgical cuff has to heal first. But your radiation oncologist will do a pelvic exam to make sure you're ready.

zsazsa1

I had external, and chemo. 

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

Stage IC, Grade 2 endometrioid adenocarcinoma

Hello Orchid.  My diagnosis is above.  Following surgery, I had external beam radiation but not internal brachy therapy.  Back in 2005, my gyn onco and my radiation onco deemed me cured and decided (on their own) that internal radiation was overkill.  I also did not have a complete harvest of sentinel lymph nodes for the pathologist.  Anyway, I've had 2 recurrences since then.  First, was treated with more external radiation and second with chemo.

My experience with radiation has been good.  I was left with radiation cystitis in my bladder, which I experience as a frequency/urgency issue with urination.  This is not a burden, and I know of no other damage.  Now, we are following a slowly increasing nodule in my lung.  If it proves to be malignant, I would not hesitate going for targeted "cyber knife" radiation to kill it, if that were recommended over surgery.

I think you should be thinking hard about your tumor grade being classified as aggressive even though you have the "garden variety" endometrioid adenocarcinoma like I do.  I was "cured" and yet I recurred twice and am considered now as Stage IV metastatic; treatable but not curable.

A second opinion at a leading cancer center, if your insurance will pay, is a good idea.  Gather all the recommendations and then make your decision.

Best wishes as you navigate the path that is right for you.  Oldbeauty

Orchid65

oldbeauty said:

Stage IC, Grade 2 endometrioid adenocarcinoma

Hello Orchid.  My diagnosis is above.  Following surgery, I had external beam radiation but not internal brachy therapy.  Back in 2005, my gyn onco and my radiation onco deemed me cured and decided (on their own) that internal radiation was overkill.  I also did not have a complete harvest of sentinel lymph nodes for the pathologist.  Anyway, I've had 2 recurrences since then.  First, was treated with more external radiation and second with chemo.

My experience with radiation has been good.  I was left with radiation cystitis in my bladder, which I experience as a frequency/urgency issue with urination.  This is not a burden, and I know of no other damage.  Now, we are following a slowly increasing nodule in my lung.  If it proves to be malignant, I would not hesitate going for targeted "cyber knife" radiation to kill it, if that were recommended over surgery.

I think you should be thinking hard about your tumor grade being classified as aggressive even though you have the "garden variety" endometrioid adenocarcinoma like I do.  I was "cured" and yet I recurred twice and am considered now as Stage IV metastatic; treatable but not curable.

A second opinion at a leading cancer center, if your insurance will pay, is a good idea.  Gather all the recommendations and then make your decision.

Best wishes as you navigate the path that is right for you.  Oldbeauty

Gathering recommendations

Hi Oldbeauty,

Thanks for your coments.  Were your 2 recurrences in your pelvic area?  You survived 15 years since your initial diagnosis.  That is positive.

Sorry to hear about the nodule in your lung.  I guess once you have cancer, it is a constant battle.

I am going to see a gynecology oncologist at Stanford tomorrow.  Thanks for your tip to gather all my recommendations before making a decision.  This is sound advice.

Thanks.  Orchid65

oldbeauty

Orchid65 said:

Gathering recommendations

Hi Oldbeauty,

Thanks for your coments.  Were your 2 recurrences in your pelvic area?  You survived 15 years since your initial diagnosis.  That is positive.

Sorry to hear about the nodule in your lung.  I guess once you have cancer, it is a constant battle.

I am going to see a gynecology oncologist at Stanford tomorrow.  Thanks for your tip to gather all my recommendations before making a decision.  This is sound advice.

Thanks.  Orchid65

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

Denise66

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,

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. 

MAbound

Considerations

I've been sitting back and hoping somebody else would mentions some things to be weighed into the decision of whether or not to have radiation for Orchid's particular circumstances, but I'm not seeing them, so here goes:

1.) Radiation can only be used once to an area, so with an early stage cancer that isn't an aggressive one, some don't have it so that they can use it should a recurrence happen.

2.) While you are early stage, you do have some high grade cells and perhaps that is why they are thinking of radiation as insurance for where cancer is most likely to recur. That makes sense, but radiation only kills what it is aimed at and can miss microscopic cells if they aren't exactly where it is aimed. If they are concerned because of your grade, maybe chemo would be another option because it is a systemic rather than a localized treatment. I don't know if "standard of care" would make that hard to get approved by insurance, but it would be an interesting question to ask.

3.) The pathology you've shared with us doesn't tell the whole story. Other things that weigh into the decision to radiate are:

     a.) origin of the cancer in the lower part of the uterus where the wall is thiner

     b. ) % of myometrium penetrated (radiation is recommended for greater than 50%)

     c. ) lymphovascular invasion. Did they test lymph nodes? Does your report specifically say if it was negative for this?

Beyond radiation there are things that you can do that are protective against this cancer: diet, excercise, reducing exposure to endocrine disrupters, Metformin, and seeing a naturopathic doctor who specializes in cancer who would guide supplement use. There is a lot of discussion about those measures throughout the posts within this group.

Your cancer was caught early, so your odds are lower of having a recurrence, but that cloud of worry will always be there. It's good that you are not being a passive patient when treatment is being proposed for you because what is "standard" might not be the best or only treatment option. Keep asking questions and learning all you can to make what is the right decision for yourself and one that you won't have misgivings about.

oldbeauty

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

Fridays Child

Orchid65 said:

Radiation treatment after hysterectomy

Hi zsazsa1,

 

Thanks for your comments.  My aunt tells me that radiation and chemo are really hard on the body.  I'm worried that the radiation may damage my healthy cells.  Do you know of the pros and cons of internal radiation treatment of the vaginal cuff vs. external beam radiation therapy?  My oncologist recommended External Beam Radiation Therapy, but he said he would let the Radiation Oncologist decide which one to use.  During the surgery removing the uterus, the vagina did tear.  Would it have to heal before radiation could be applied?

Times and treatments change

Orchid, your aunt is correct that radiation and chemo are hard on the body.  So is cancer.  The management of symptoms, however, has improved a lot in recent years.  My chemo experience was much different from my brother's, which was 15-20 years ago.  We do our research, consult the doctors, but ultimately we have to decide what course of treatment we will take.  Best of luck to you!

MoeKay

Questions on your grading

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

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

Considerations

Hi MAbound,

Thanks for your comments.

How would the following things weigh into the decision to radiate?

a)  (I do not know if the origin of cancer was in the lower part of the uterus.  On the pathology report it says Tumor size: Cannot be determined: diffuse thickening of the endometrium on both the anterior posterior aspects of the uterine fundus.)

b) Percentage of myometrial invasion: 88%

c) Lymphvascular invasion: present

Thanks for your input.

takingcontrol58

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

 

Personally, I would cancel the assessment. You need to treat your cancer as if it is high grade.
It is high grade, which means there is a high chance it could recur.
Lymphvascular invasion means there is a high chance of the cancer spreading- I also had 
lymphvascular invasion- and myometrial invasion of 88% is another sign of high grade,
though my tumor had less than 50% myometrial invasion.

 

Did you discuss getting on metformin or getting some of the blood tests I sent you?

Regards,

Takingcontorol58

MoeKay

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?

Stanford can check with your insurance

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. 

Forherself

Orchid65 said:

Considerations

Hi MAbound,

Thanks for your comments.

How would the following things weigh into the decision to radiate?

a)  (I do not know if the origin of cancer was in the lower part of the uterus.  On the pathology report it says Tumor size: Cannot be determined: diffuse thickening of the endometrium on both the anterior posterior aspects of the uterine fundus.)

b) Percentage of myometrial invasion: 88%

c) Lymphvascular invasion: present

Thanks for your input.

Fundus

Is the upper part of the uterus.

MAbound

Near the neck

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. 

Armywife

Quick Two Cents

I had two separate path reports done too - one by the hospital where I had the surgery, and one by MD Anderson, who I requested as a second opinion.  My hospital report said Stage IIIA, Grade 1, with lymphvascular invasion, positive pelvic wash.  MD Anderson said Stage IVB, Grade 2, also with lymphvascular invasion and positive pelvic wash. I didn't request a third opinion as a tiebreaker, but decided to treat it as the worst-case and hope it was the better case.  Both doctors agreed on 6 chemos, which I completed.  My surgeon wanted me to have radiation, but I couldn't find any studies that indicated it would prolong survival in advanced stage cancer like mine.  MD Anderson agreed that it might be wise to reserve radiation for recurrence, although their tumor board was about equally divided on that decision. It was a really stressful decision to make, though.  I wish you the very best. I know both treatments can have serious side effects, and I can't speak about radiation, but chemo was entirely do-able.  I had a serious reaction to the first chemo, but they switched me to a different drug and I have had no serious lasting side effects.  The chemo months go by quickly.