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Radiation or not after adenocarcinoma?

Kat Lady's picture
Kat Lady
Posts: 13
Joined: May 2010

Hi! I am 63 years old. I was diagnosed with adenocarcinoma in April 2010, and had a complete hysterectomy on April 27th. I was told that it would be done labroscopically if the cancer had not gone more than 50% into the uterine muscle, which would be determined by pathology during surgery, and that if it was more than that, they would need to do a bigger incision and take lymph nodes to stage it. They determined that it was a 3cm tumor, grade 1, stage 1a, and only 3mm into the uterine wall, so they did not take nodes or do a washing. Then, however, I was referred to a radiation oncologist, and he told me I could reduce my chances of recurrence from 20% to 1-2% if I took 28 sessions of external radiation. I am getting second opinions next week from a gynocology oncologist and the medical oncologist who had treated my husband.

I am trying to determine if I should take the risks of radiation or not. I am VERY afraid of the side effects, especially those that might be permanent. I would like to hear from people who have had radiation and if they have any permanent side effects. I am understanding that these can occur even years after radiation, and can be life changing. Please tell me what you can!

Thanks,
Julie

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I had radiation. 25 external beam and 4 internal high dose last Fall. During the radiation I had diahrrea and was fatigued. That lasted for about 4 weeks. I am fine now and don't seem to have any side effects at present. My diagnosis is stage IIIC grade 2.
I had the choice of no radiation but, my medical team recommended it in order to reduce my chances of recurrance. I don't regret having it. On March 30th I got to hear the wonderful words from my gyn/oncologist that I am in remission. I hope it stays that way.

Best to you. Please let us know how you are doing.

kathybd
Posts: 126
Joined: Jul 2009

I had adeno carcinoma, Stage 1b, grade 2-3. Just had 6 rounds of Taxol/carboplatin, tried Megace, but ended up with a blood clot. No radiation recommended. On close surveillance.

Good luck to you.
Kathy

SI
Posts: 21
Joined: Jan 2010

Hi Julie,
I have just been through the radiation dilemma and after much thought and consulting with several onologists have decided not to have radiation. (My diagnosis was Stage IIIA Grade 1) The recommendations were evenly split among the oncologists that I saw. The last radiation oncologist that I consulted said that it is not known yet whether radiation is a good choice for adjuvant treatment in some uterine cancers. He said that there are trials currently underway trying to determine the benefits and risks. I have some intestinal and bladder issues as well and that would increase my risks. However, most people get through the radiation treatments just fine with no lasting problems.
Am glad you are seeking more opinions. I continued to seek opinions until I felt more comfortable in making the decision.
Si

Kat Lady's picture
Kat Lady
Posts: 13
Joined: May 2010

Thank you for your replies; they help. I feel like this is the biggest decision I have had to make (so far) in my life. I will be interested to see what the 2 doctors have to say next week, and hopefully they can help me decide. Also contacted my surgeon and the radiation oncologist with questions, and haven't heard from them yet, but I am hopeful that I will.

Thanks again,
Julie

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

I am stage 3C, grade 2 and unfortunately mine had moved to just only pelvic lymph node. If it hadn't moved to outside the uterus, my doc would have recommended no chemo and/or radiation. I had 6 rounds of chemo (taxol/carpo) and 33 sessions of radiation sandwiched in between the chemo. This was my docs recommendation after I challenged him on the positives and negatives. I will tell you, I don't feel many oncologists know enough about the after affects of treatments, so how can they tell us before the start of chemo/radiation.

You might be fine without radiation as looks like it has not spread.....very lucky gal! But getting opinions from a few good, qualified docs would be what I'd suggest.

I completed radiation last April and do have some side affects. Mine was internal type and bowels are challenged, but are so much better than a rush to the bathroom. Radiation does tend to dry up the vaginal area and joints. I'm always tight after working out so now more into yoga to help my mobility. Understand it might take years to get back to my normal flexible self. In the end I'm so happy I did all the treatments, just wasn't truly aware of some of the side affects.

Best to you
Jan

bonniesue
Posts: 126
Joined: Apr 2009

Hi Julie, My mom went thru this last spring and I was crazed because of the varied and regional differences in opinion. She had davinci robot and it was not fresh frozened in the operating room if that makes a difference(do not understand).She was a grade1 stage 1c or 2B depending on the path report(4) with 2 saying 1c and 2 saying 2B all grade one. She had 6 pelvic nodes taken and they were negative. washings were neg. and no periaortics sampled, tumor more than 50% into endometrium... it was thought by the gyne onc to be early as no symptoms found by kidney stone! He was against pelvic radx and felt vag. brachy was indicated. However the radx onc felt she needed both and argued to the surgeon in front of my mom. this led to 3 more gyne onc appts and they felt she needed pelvic radx (25) and 3 brachy and she saw an additional rad. onc. who felt she needed both. I also talked to other people. No consensus but regionally it was to have both. I feel your dilemma cuz you are time crunched. My mom is 72 and in good health and she had both and has no side affects and is NED and this has been since last spring. Prayer and meditation helped get me thru this and my mom thru this. used Ann marie chaisson and Dr. Weil meditation mantra thru it. She is happy she had it done and I am suppportive. Now radiation is less damanging as the stuff done in early nineties. She did well. I hope this helps Julie. My uncle had colon cancer and took the most aggresssive tx and is still NED.. I think he helped the decision as well. After you make a decision do not look back and proceed forward! They seem to leave it up to the patient which is hard cuz they are the doctor---was amazed it was not more exact. Prayers and healing thoughts your way> bonniesue

Kat Lady's picture
Kat Lady
Posts: 13
Joined: May 2010

Thie week I had two appointments to determine what, if any, aftercare is needed after my adenocarcinoma of the uterus. The first appointment was at the big University teaching hospital in our state, and I saw a gynocologist oncologist. He did not recommend the 28 external radiation treatments for my stage and grade of cancer, but he did make an appointment for me to meet with another doctor on June 15th to discuss internal treatments, which they do on an outpatient basis. He is also reviewing my actual pathology slides and wants me to have a chest CT to double check that something is scarring from pneumonia and not cancer.

My second appointment was with the oncologist who treated my husband after he had his 3 cancers. He noticed an ADDENDUM by a different pathologist to my pathology report that said that instead of the grade 1, stage 1b in the first report, it was determined to be grade 1, stage 1a! This oncologist said he didn't think I would have to have any further treatment at all, and he is going to speak to the oncologist who recommended the 28 external treatments and be sure he is aware of the addendum. I am suspecting that my surgeon and the gynocologist oncologist did not know about the addendum, as it may not have been in their reports. I am going to be sure all are aware of it.

I can not tell you how great this made me feel. I was on top of the world last night, breathing deep and relaxing more than since all this radiation aftercare talk started! I feel very blessed; may still do a few internal treatments, but not as afraid anymore of it spreading through the lymph system.

I will continue to keep you posted.

Kat Lady

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Such good news! I can imagine the celebration you must be having! Take a few more deep breaths, dance and enjoy life!

Look forward to more good new!

Karen

kathybd
Posts: 126
Joined: Jul 2009

Am so very happy this worked out well for you. Those second and third opinions are very important.

Best,
Kathy

CaCowgirl
Posts: 27
Joined: May 2010

Kat Lady, How nice to be out from under the cloud of uncertainty & wondering what to do. I'm hoping you're "home free" & can put all this behind you. Have a wonderful W/E! Another Kathy

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

Hi Kat, I have a sad story of radiation. I've got the same cancer as you. First had total hyster. - no other treatment. Two years later I developed a pelvic tumor and a tumor on my lungs. After a biopsy they confirmed - same cancer, but now stage 4b. I then had carbo/taxol (which I adjusted to nicely). That helped, but tumor continued to grow. They told me that if I had a heavy treatment of radiation - with more chemo - I'd live a year instead of a few months. Well, I felt I still had a lot to do - you know - to get ready to leave - so I went ahead and did the radiation. 28 external - and 7 blasts direct to the tumor. I was freaked out the entire time. Hated getting up on that table with my bum exposed and a machine rotating around me. It all seemed not right somehow. Now I have hip pain - my bones are sore and I 'm very stiff. The tumor has shrunk - but all the damage makes the whole area hurt. However, I'm in remission. They can't believe it. I now realize how little they actually know - and how everything is so rushed. I never got to really figure things out on my own. They were frantic. I had to have radiation now or die. It was palliative! And here I am sore - but in remission. I wish now that I had not done the radiation - or not done so much. I thought it was okay because I would not have to deal with long term consequences - but here I am. My advice is to go slow - there really isn't a big rush. You can always have radiation later. Recover from the chemo - then reevaluate - and remember that they all say something different and in the end you will have to make the choice. Radiation, however, does seem to work. But not on everyone. A friend of mine had cancer - my prognosis was dim - he was given a few years to live. Well, he's gone and here I am - working everyday and basically functioning close to normal. Go figure!!!
Mia

culka's picture
culka
Posts: 161
Joined: Oct 2009

when I was on that table I was asking all the time "don`t hurt me more than it`s necessary". I end up with hip pain too. Nothing else but hip pain. I cut off all cheese and brought more greens include wild greens (dandelions, purslane, chickweed, whatever weed is in my acreage) and I am fine now.
Try.
Jana

Kat Lady's picture
Kat Lady
Posts: 13
Joined: May 2010

You are so right, they don't know everything, it is really a guessing game. I felt rushed by the radiation doctor too; he wanted to do the exam first, and I was not happy with that. The doctor at the University hospital consulted with me first, did the exam, then consulted with me after again. Mia,sorry you had to go through so much, but I am so happy for you that you are in remission, and hope you stay that way! Thanks for sharing your story, it is the permanent side effects of radiation I am afraid of more than the temperary ones. I am so glad the 28 sessions of radiation is out! I still may do Brachy outpatient therapy, not sure, am still waiting for more information from the University hospital that I went to; they are going to review my pathology, and have an appointment with another doctor to discuss Brachytherapy, but will hear from the other doctor first; also he wants me to do a chest CT, thinks it's just scar tissue though, and I see my surgeon again next week, so will discuss the amended path report with him.

There is a lot of wisdom in waiting until there is another problem to do more treatment rather than just doing it as prevention.

My husband had 3 cancers, was offered preventative radiation to the entire brain as a preventative for the small cell lung going there, he wisely refused that after he was told it wcould affect mental capacity, and the cancer never went there. He did have radiation to his chest for the small cell, and he was in remission for 10 years when he passed from what was most likely a blood clot after outpatient surgery. So,you never know what will take you or when; you just have to do the best that you can, and it isn't easy. Take care!

Julie

Kaleena's picture
Kaleena
Posts: 2037
Joined: Nov 2009

Hello Julie:

I did not get external pelvic radiation. I did, however, do the brachytherapy. I received three doses. Just to let you know, once you get the brachytherapy, that will be the only time you can have it. My radiation/onc advised against pelvic radiation because I scar a lot and the risks of radiation outweighed the benefits. Further, they really do not know the long term effect of radiation.

Recently, I was believed to have a recurrence. Was told tumor could not be removed. At first wanted me to do chemo. I switched doctors. Had a positive biopsy. Said it could not be removed (Not enough margin), and wanted me to have seven weeks of radiation. My radiation/onc indicated that once he would radiate that area, that would be the only time I could get radiation in that spot so if it came back again I was out of luck. (I opt out of it).

I would go with the brachytherapy only if it makes you feel comfortable about that type of treatment. You just have to get checked yearly with the radiation/onc to check out scarring and/or thickening.

I feel if they do not give me options or if I feel pressure, then I say no until I have had a chance to think about it.

Wishing you well.

Kathy

P.S. By the way, I had surgery to remove tumor. No cancer found and they fixed my hernia from my initial surgery back in 2005!

Kat Lady's picture
Kat Lady
Posts: 13
Joined: May 2010

Thank you all who shared their stories with me. Kathy, I did not know they can do the Brachytherapy only once, but it figures, so that would put us "out of luck" in case of a recurrence, when we really need it. I am so glad they did operate on you and that your tumor was benign! I am leaning strongly toward doing nothing more at all and just getting my regular check ups. Then, if anything turns up, they will be able to treat it. You are correct, you do have to be your own advocate, question everything, follow your own best guess at what should happen. It takes a lot of effort to correlate between providers. I set up my CT scan Monday at one provider, to be sent to the other; it took multiple phone calls, I had to ask this one to call that one, no one would take my word, and the fax at the one place wouldn't go through for the letter from the doctor. I felt bad that so many people had to take so much time when they had better things to do; the system should be easier, but it is not. Anyway, after I got the CT set up, I opened my new "Good Housekeeping" magazine to relax, and they had an article on how dangerous CT's are for you! Go figure! Some said it is a big guessing game, they are right, no one really knows. My step-son, who is a radiology technician, said they know how to cure cancer, but they won't because it makes so much money for them. I have to agree, in some cases (not all) that may be true.

Take care all!

Julie

cathyK's picture
cathyK
Posts: 93
Joined: Jul 2009

after reading that one doc did not know the whole story (the addendum)
I have told everyone , "sorry that I have to do this, but I am calling to MAKE SURE this or that test/exam is being sent to my oncologist and my PCP". I am going to a gastroentrologist on monday and my oncologist said , hmmm, there is no records here of your colonoscopy , which was done in november! so I got on the phone and called them.
so I have become my own doctor. calling and reminding and making sure all the right people get ALL my records.
glad to hear the good news , keep us posted :)

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

julie,

i have upsc, and had the big radical hysterectomy and chemo. my surgeon recommended brachey therapy only, as he thought the pelvic/abdominal radiation was too toxic (for me), and that the risks outweighed the benefits. and he is known to be very aggressive. i went for a second opinion with another gyn/onc who recommended full abdominal pelvic everything radiation. then two different radiologists recommended two different radiations, my chemo doctor recommended more than brachey therapy, but less than full radiation. then the tumor board at my local hospital met and recommended no radiation, none at all, which convinced my chemo doctor who changed her mind and recommended no radiation. so i decided to do no radiation, and am glad of it. it's always still there if i choose it, or need it sometime in the future. just goes to show how an inexact science it all is; really your guess is as good as your doctor's! i mean, in my case, 6 different doctors/tumor board, 6 different opinions! listen to everyone, then make your own decision based on your own best judgement. best to you.

sisterhood,
maggie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree with Maggie. Cancer treatment seems to be a crap shoot!! Become informed and make your own best decision.

I have UPSC stage 3a and had 6 rounds of carbo/taxol only. Recent recurrence and decided to do watchful waiting with major diet changes - my husband is not happy that I did not jump at the opportunity to have chemo again (sarcasm!!). Many here are seeking alternative treatments (including me) and many have had wonderful results.

Many blessings to all, Mary Ann

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

mary ann,

i'm sure we've posted re: this before somewhere, but i wanted to say specifically i'm glad that we're both doing the watching and waiting, and not jumping back into chemo or whatever. i really do believe our alternative diets, exercise, meditation, etc., is going to make a difference, at least it won't hurt us like chemo and radiation do--not to say they don't have their place. it' just that the more i read, the more i realize that chemo and radiation do not get all the cancer cells most of the time, and those cells that survive the chemo, etc., are stronger than the ones that went before, so with each medical treatment, we're strengthening those bloody surviving cancer cells! just seems wiser to try to get at the root, or stop the progression naturally.

i have no idea if my one slightly enlarged node is cancerous or not, since there are a number of benign reasons why a node would become enlarged, but it's seems as likely as not to me that it probably is cancer. i'm not doing a biopsy at this point, and a surgery to remove it would also be too big at this point, hence the wait and see.

i have an email into my chemo doctor as we speak re: several nodes that diminished that i had no idea about! it was on my last ct scan, but geeze, why didn't i know about some other earlier enlarged nodes???? also, have no idea if they were cancerous or not, or what they were being compared to. my dear, and i mean it, chemo doctor emailed me right back that when she got back to the office on monday she'd check my charts and answer my questions. it is a good sign that some nodes diminished, but when were they first noted and what happened? i should know more soon. i have found that there is usually a lag time between doctor visits and the questions i have that arise from them. rarely do i think fast enough at the time to ask the questions that occur to me later. i think it's because i'm so in the thick of it during the visit, trying to digest whatever new information i'm getting, trying to get my already prepared questions answered, that i miss some pretty obvious other questions. so be it. thank goodness my doctor is responsive. i know if i emailed my gyn-onc, i doubt i'd get a response, though i could be doing him an injustice. i know i could make an appointment to see him when i want pretty much--at his earliest opening, but he's just not as available.

and, of course, i have all of you--my most trusted, valued, informative, available allies. couldn't ask for more from this sisterhood.

maggie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Thanks for your comments. I noticed your response to Claudia about many deaths you experienced prior to your CA diagnosis. If interested, read O. Carl Simonton's book, Getting Well Again. This is my inspiration and "bible" that helped me learn and change after my diagnosis. He is a pioneer in the mind-body field, book written in 70's!! and costs pennies at Amazon plus shipping. But, in my mind, worth every penny.

He talks about the immune system being compromised by stress which we have talked alot about here - HOWEVER, that's not all he helps with... the book makes you go through some specific exercises (not physical) to help the reader become aware of how they think and what needs to change IN ORDER TO AVOID RECURRENCE!!!

I had a list of stressors within the 18 months before my diagnosis. It all made sense when I did the work he recommends. I think this is so important, cause if we just get all this chemo, etc. or even get relief from our alternative methods we need to MAINTAIN this so we don't backslide and get sick again.

I really think I slacked off too much after being declared NED - got complacent and recurred. Or perhaps, UPSC needs more than the magic 6 rounds of chemo. Who really knows anyway???

Anyway, nice chatting with you. Keep up all the good work. I'll let you know about my first blood work since the diet began - getting this week.

Blessings to you and all our sisters here, Mary Ann

maggie_wilson's picture
maggie_wilson
Posts: 616
Joined: Nov 2009

yes, i agree good to chat with you, too. and yes, please let us know the results of your first blood work post diet! i just think it' going to be a good one. and, i'm going to order that simonton book right away! i do know what you mean about complacency, or maybe it's just a well needed/deserved r & r after all we've been through, but for the first 6 months post chemo i changed nothing!! ate everything i wanted, whenever, walked only a little, and basically acted like i was done with cancer ( though still had my massages and acupuncture).

then i woke up and realized that i had to take more charge. i've always been a believer in alternative methods of healing and the mind-body connection, so it makes sense to me now that this is where i'd land, after the initial shock of treatment and diagnosis. now it's for the long haul, and no quick fixes. so be it.

it really made me so sad to recount all the deaths of such old, long term friends, the shortest of which was 20 years for 2 friends , 30+ for one, 40+ for two others. irreparable losses and so irreplaceable in my life. they were so much the pillars that held me for so, so many years.

fortunately i still have some long term friends, and my dear family that keeps expanding, unexpectedly. my single daughter decided at 39 that if she didn't act quickly, she wouldn't have a child, so got pregnant and now we have this pistol of a two year old granddaughter, not unlike her mother (3rd degree black belt). then my son, not to be outdone by his younger sister, visited africa and fell in love with an african woman, got married and brought us a new, wonderful daughter-in-law, her 9 year old daughter and now our granddaughter, and their 1 year old son, our new grandson. so, from zero to 3 in a little more than a year. so, lots to live for! our daughter in law really looks to me as her new mom, which i love, but am sorry can't be there a little more for her than i have been. my son brought his family here once they all got their green cards, etc., not easy, right after i had my surgery. so our new, infant grandson would sleep on me as i snoozed off and on on the couch while everyone just did what they did around me. it was so sweet and so healing to have his little body resting on mine.

so, we'll keep up our good work, and i'll await your good news.

sisterhood,
maggie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Your family sounds awesome. I'm jealous!! :)

more to come. I'm adding you to my friends list. I tried the email thing within this site and it works.

Take care, sister. Mary Ann

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