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Radiation treatment after hysterectomy

Orchid65
Posts: 33
Joined: Feb 2020

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
Posts: 553
Joined: Oct 2018

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
Posts: 33
Joined: Feb 2020

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?

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LisaPizza
Posts: 340
Joined: Feb 2018

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.

Fridays Child
Posts: 207
Joined: Jul 2019

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!

barnyardgal
Posts: 273
Joined: Oct 2017

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. 

zsazsa1
Posts: 553
Joined: Oct 2018

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
Posts: 303
Joined: May 2012

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
Posts: 33
Joined: Feb 2020

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
Posts: 303
Joined: May 2012

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
Posts: 74
Joined: Aug 2018

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. 

oldbeauty
Posts: 303
Joined: May 2012

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

MAbound
Posts: 1114
Joined: Jun 2016

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.

MoeKay
Posts: 329
Joined: Feb 2004

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
Posts: 33
Joined: Feb 2020

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?

takingcontrol58
Posts: 263
Joined: Jan 2016

 

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
Posts: 329
Joined: Feb 2004

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. 

Orchid65
Posts: 33
Joined: Feb 2020

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.

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

Is the upper part of the uterus.

MAbound
Posts: 1114
Joined: Jun 2016

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. 

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Armywife
Posts: 452
Joined: Feb 2018

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. 

Orchid65
Posts: 33
Joined: Feb 2020

Thanks for writing.  Just wondering, was the second pathology report done by MD Anderson paid by your insurance or did you have to pay out of pocket?  Did you happen to find any studies that indicated that radiation therapy would prolong survival in earlier stage cancers?

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Armywife
Posts: 452
Joined: Feb 2018

Because my primary care doctor referred me to the second opinion, insurance covered the cost - that's how our military insurance worked.  Your mileage may differ.  And yes, I'm sure other ladies know more than I do, but at that point it seemed like the conventional wisdom was that early stage cancers are more likely to recur locally, and advanced stage cancers are more likely to have distant recurrence.  Radiation deals more with local recurrence.

MoeKay
Posts: 329
Joined: Feb 2004

Hi Orchid65, 

Regarding your question on studies on improved survival for early stage endometrial cancer patients who received radiation therapy, here are links to two I came across.

https://www.ncbi.nlm.nih.gov/pubmed/27793358?log$=activity:

Adjuvant radiation therapy is associated with improved overall survival in high-intermediate risk stage I endometrial cancer: A national cancer data base analysis.

See also:

https://www.ncbi.nlm.nih.gov/pubmed/31474587

A proposal for a new classification of "unfavorable risk criteria" in patients with stage I endometrial cancer.

These are just the two I came across after doing a quick Pubmed search.  I also recall a few years after I was treated in 1999 reading a study discussing that the authors' results showed a trend toward a survival benefit for certain subgroups of Stage 1 patients, but that, for various reasons, the study was underpowered to establish the benefit with statistical significance, or words to that effect.  That's quite an old study now, and I wasn't able to locate it online. 

 

 

Orchid65
Posts: 33
Joined: Feb 2020

Hi MoeKay,

Thanks for the links to the two studies.  In the first one, the results showed that surgery and adjuvant radiation therapy was associated with a 4.1% improvement in 5 year overall survival vs. surgery alone in stage I high-intermediate risk stage I endometrial cancer.  Do you think the 4.1 % improvement in 5 year overall survival outweighs the side effects of the radiation therapy? 

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

Results encompass a wide range of bipsy results.   I would question such a broad category giving meanifngful reults.  This disease requires us to make very difficult decisions that have no right and wrong answer.  The link I shared about treatment actually recommend chemotherapy PLUS radiation for high grade stage 1B endometrial cancer. 

MAbound
Posts: 1114
Joined: Jun 2016

It looks like you have at least 3 of the risk factors that would put you into the high risk category for early stage cancer: lymphovascular invasion, grade 2-3 mutation, and stage 1B. That is a really helpful study to help you make a decision. Moekay is a really good researcher in this group and seems to have a knack for finding what someone with misgivings needs. She was a big help to me when I was trying to talk myself out of radiation in 2016 by helping me to understand the criteria I had showing that radiation was worth the risk in my particular circumstances. I know I said that some people in early stages save radiation for recurrence, but I think this study is really helpful for defining when it would be ok to do that and when it would be riskier to skip it.

Orchid65
Posts: 33
Joined: Feb 2020

Hi MAbound,

I was reading and trying to understand the 2nd Study, A proposal for a new classification of "unfavorable risk criteria" in patients with stage I endometrial cancer.  In conclusion, the "study showed that adjuvant radiation was associated with an overall survival benefit in patients meeting GOG-99 criteria only; however, no survival benefit was seen in patients meeting PORTEC-1 criteria only".  How do I know who meets the Gynecologic Oncology Group (GOG)-99 criteria and who meets the Post_Operative Radiation Therapy in Endometrial Carcinoma (PORTEC)-1 criteria?  What do the numbers in parenthesis mean? (HR=0.73; 95%Cl 0.60 to 0.89; p=0.002).

Thanks for any clarification you can provide.

zsazsa1
Posts: 553
Joined: Oct 2018

Hi, Orchid.  I haven't done this research in a while, and mine was serous, not endometrioid.  The GOG-99 was an older study, PORTEC-1 is an older study from a  different (mostly European, I think?) group.  It is possible to find these studies' protocols, inclusion criteria, and results on line.  The numbers in parentheses are statistical values.  How I wish I had had statistics relevant to clinical studies instead of all that stupid Calculus that I never, never needed.  Anyway, HR is hazard ratio, has to do with survival rates of the treated group as opposed to untreated group.   the CI is confidence interval, meaning that the value has a certain chance of falling within the proposed range.  And the p value has to do with how likely that something could have just happened by chance.  A p value of <0.05 is considered to be statistically significant, meaning that the odds of the results having happend just by chance, are less than 5%, or less than 1:20.  So a p value of 0.002 means the results are statistically signiificant.

Orchid65
Posts: 33
Joined: Feb 2020

Hi zsazsa1,

Thanks for explaining what some of these acronyms mean.  I was searching on the internet for GOG-99 and PORTEC-1 and found a lot of interesting studies.  Thanks again.

Orchid65
Posts: 33
Joined: Feb 2020

My gynecology oncologist said I should have radiation therapy 6-8 weeks after surgery.  Does anyone know what the pros and cons are of waiting a little longer, a few weeks, a few months or even a year?

zsazsa1
Posts: 553
Joined: Oct 2018

The earlier, the better.  Mine was delayed because my cuff was slow to heal.  The sooner you have it, the more effective it will be.

zsazsa1
Posts: 553
Joined: Oct 2018

I'm assuming they're only recommending vaginal brachytherapy.  I agree, because of the location, degree of invasion, grade, and LVSI, radiation is a good idea.

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

Here is another link to a study I haven't seen before.   

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5840256/

Orchid65
Posts: 33
Joined: Feb 2020

Does anyone know if the side effects for Brachtherapy (gastrointestinal problems, urge to urinate) or External Beam Radiation Therapy (diarrhea, fecal leakage, need to stay close to a toilet, limitations in daily activities due to bowel symptoms) go away after treatment or are they permanent?

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BluebirdOne
Posts: 393
Joined: Jul 2018

I had 3 brachytherapy for my 1a Serous with LVSI. I agonized over the decision and looking back it was a waste of energy. I agreed with my doctors‘s recommendations of chemo and brachytherapy but still wanted to make sure. I read the studies available in 2018, and had the brachytherapy sandwiched between my chemo. The actual procedure is embarrassing but very easy to tolerate. I had some diarrhea but it went away after a month, it was never bad. I have other issues with bladder and bowel that I think are possible damage from surgery. The cliche “new normal“ would apply. Mostly I have issues with not receiving the “signals“ of a full bladder until it is almost too late. Also the same with  bowel movement. The issue started immediately after surgery,  so I know it was not chemo or radiation. The docs say that some nerves were most likely damaged during surgery, but it has gotten better over time. All in all I am glad I did everything to survive this horrible disease. I do not regret any of my treatment and frankly knowing what I know now about recurrence that I did not know in the moment gives me more confidence I did the right thing for me. 

Denise

 

Orchid65
Posts: 33
Joined: Feb 2020

Hi BluebirdOne,

Thanks for sharing your experience.  It's good to hear your bladder and bowel issues got better with time.  I thought the side effects might be permanent for life.  Did you have any recurrence of cancer?

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BluebirdOne
Posts: 393
Joined: Jul 2018

Thanks for asking. Thankfully, NED. My problems gradually subsided, but I am not the same. But very minor issues, nothing I can’t handle. As I like to say, I am still here! 

Denise 

Orchid65
Posts: 33
Joined: Feb 2020

That is great news.  What are you doing to prevent recurrence?

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BluebirdOne
Posts: 393
Joined: Jul 2018

but my diet was not that bad to begin with so the changes are minimal. I am continuing to try and get my old level of fitness back, and simply monitoring. My tumor was Her2 negative, so no other treatment than surgery, chemo and radiation was recommended. Being 1a, thankfully, no other treatments are recommended at this time. What scares me the most is that I have pretty significant osteoarthritis in my spine, among other places, and the chronic pain could mask cancer related pain, so I am vigilant. The good thing is that the arthritis pain is much worse early and then usually subsides during the day, typical for arthritis, but not for cancer. All in all except for anxiety I am doing quite well. 

Denise

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jan9wils
Posts: 155
Joined: Mar 2017

Hi Orchid,

I was diagnosed after my robotic hysterectomy in 2014 with Stage1B grade 2 endometriod adenocarcinoma with lymphovascular invasion. I had 28 external beam treatments and 3 brachys. I had pretty severe diarrhea every time I would eat for several months even though I was careful with my diet. I was teaching at the time and did not eat during the school day to try and control the diarrhea. I also took lomotil. Almost a year after my radiation I was still having gastro issues, though not as severe. After a consultation at a holistic pharmacy I began taking a good quality probiotic among other supplements. I improved almost immediately. I have recurred three times since, though all distant, never to my cuff. So maybe the radiation helped. If/when you have radiation I would suggest a good probiotic.

My gyn/onc sent me to MD Anderson for second opionion/evaluation. It was covered by my insurance. Incidently, my doctor at MDA recommended the exact treatment my gyn/onc had recommended for me.

Jan

Orchid65
Posts: 33
Joined: Feb 2020

Hi jan9wils,

Thanks for your comments.  It is good to hear you found a probiotic that could help with the gastro issues.  Do you think you could have taken the probiotic during the radiation treatment to relieve the diarrhea?  Did you have any urinary problems?  Were you treated with chemotherapy for the three distant recurrences or did you use radiation?  I hope you are better now.

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jan9wils
Posts: 155
Joined: Mar 2017

Yes I could have taken it during radation but didn't think of it. And nurse, techs and onc/radiologist did not mention it. I wish I had taken it during treatments because I've learned from women on this board that have and had good results. I did not have urinary problems, thankfully. For my recurrences I had chemotherapy twice, surgery three times and participated in an immunotherapy clinical trial. 

zsazsa1
Posts: 553
Joined: Oct 2018

Orchid, I used probiotics during radiation, and they helped a LOT!  I didn't know about this beforehand - wish I had.  I had such horrible diarrhea (too many times a day to count, certainly over 50) start about 2 weeks into it, that I was ready to quit.  Women on here recommended probiotic.  The one I used was an OTC, and it's back there in the threads from about May, 2019.  Someone told me that they had begun the probiotic a week before radiation, and they had NO diarrhea whatsoever.  That is one piece of information that I really wish I had had before I started radiation.  I used to go to radiation fasting, and as soon as I got home I took the probiotic capsule.

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cmb
Posts: 672
Joined: Jan 2018

I believe zsazsa1 is referring to the thread How to manage radiation-induced diarrhea? which discussed the use of probiotics (and other practices) before and during radiation.

zsazsa1
Posts: 553
Joined: Oct 2018

And BTW, despite having had probably the worst diarrhea the radiation oncologist had ever seen in someone who was getting whole pelvic IMRT, it DID get better!  Took a long time.  At three months I was still nowhere near normal.  But it kept improving, and now I am much, much better, totally possible to live this way.  I could go out touring all day, and not have trouble.  It's not quite what it was, but it's perfectly fine.

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