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Grade I Stage II Endromtetrioid Adenocarcinoma Questioning radiation

mac1
Posts: 9
Joined: Jan 2012

Has anyone been a Grade I Stage II and chosen not to have radiation?
I am very concerned about reoccurring issues after radiation treatments.
I don't want to become chronically ill due to the radiation especially if the radiation is a precautionary measure after a complete hysterectomy because they are not sure if they got all the cancer. Can anyone comment or give me some insight. I am very nervous about radiation.

longtermsurvivor's picture
longtermsurvivor
Posts: 1804
Joined: Mar 2010

but the disease certainly can, as well. Was your staging IIA or B? Have you been presented with any options? Remember that, even with Hysterectomy plus both external and internal radiation, you still have a cure rate that is less than 100%, probably on the order of 80% or so. In general, if you don't radiate, you are giving up another 20% on the cure rate. I'm sorry to be so blunt about this, but those are the numbers for stage II, even with well-differentiated cancer.

You should ask the question of what happens to your cure expectancy if you go with only vaginal ovoids (brachytherapy) as opposed to both internal and external. The vaginal cuff is the area of highest risk for reoccurance, after all, and internal radiation really does a good job of preventing that.

You will see a disproportionate number of people at this site who have had radiation complications. I'm not discounting them, their complications are real. People who have not had problems don't tend to search out this site on the internet, though, and you won't get a representative sampling for this reason. Most people who go through this type of radiation do fine, and don't have severe short-term, or long-term complications.

Wishing you the best no matter which you decide to do.

mac1
Posts: 9
Joined: Jan 2012

Thank you for your input. They are only at this point suggesting external radiation, but I am sure once they do that then they will then add the internal. Just to be sure they didn't miss anything. I just wish there was some other option. I had mentioned the idea of waiting and monitering the situation and the radiologists response was not very favorable to that idea. What if there are no remaining cancer cells and I am getting radiation I don't need. Doesn't seem to be a common practice to explore or verify that there is remaining cancer cells first. They just want to jump right into the planning of the treatments. That kind of makes me uncomfortable. I believe my stage is T2 tumor invades cervical stroma but does not extend beyond the uterus.

mac1
Posts: 9
Joined: Jan 2012

Do you know where I get more information about people in there early fifties that have not had chronic issues due to the radiation?

Kaleena's picture
Kaleena
Posts: 1161
Joined: Nov 2009

HI Mac:

I was diagnosed at age 45 with Grade 2, Stage ii/iiia endometrial adenocarcinoma. They didn't know or weren't expecting that I had cancer when I had a hysterectomy back in September of 2005. It was only after my hysterectomy that it came back with the diagnosis and after another surgery one month later for staging. At the staging time, there was no evidence of any cancer. However, I did as a precaution treat with chemo. At that time, it was not indicated for radiation. But after my initial chemo treatment, my gyn/onc suggested radiation, both pelvic and internal. However, my radiation oncologist advised against the pelvic due to how bad I scar and as he puts it, the risks of radiation outweighed the benefits. So I only ended up with 3 brachytherapies in October of 2006.

I am now 51 years old and have not had any other treatment. I did have surgery again for possible recurrence in February of 2010, but the surgery only found one lymph node with microscopic cells. I did not require treatment just PET scans and CT Scans since then.

I just had a CT scan several weeks ago and it was good. The CA125 was not an indicator for me.

My best to you.

Kathy

mac1
Posts: 9
Joined: Jan 2012

Longtime Surviver. Do you know where I get more information about people in there early fifties that have not had chronic issues due to the radiation? Also where can I get information about the rate at which grade I cancer grows? So far I have read that it is a slow growing cancer but nothing defining what that means in terms of years.

longtermsurvivor's picture
longtermsurvivor
Posts: 1804
Joined: Mar 2010

http://jco.ascopubs.org/content/27/21/3547.full

It is very detailed, and will need to be studied and digested. Given what little I know about your situation, it may be an article that you actually print and take in to discuss with your radiation oncologist.

The problem you are faced with is that there is no way to know whether they got all of the cancer with your surgery. Even one small cell outside the area that was removed will eventually grow. that's what the radiation is all about. If you delay radiation and adopt a wait and see attitude toward this, and it returns, it likely won't be cured. Your best bet for cure is to proceed right away.

Grade I cancer means several things, but you can't hang your hat on any of them. The tumor is not necessarily more slow growing just because it is well-differentiated. It could grow slowly, or very quickly. In general, grade I cancers of the endometrium are less aggressive, and more curable than higher grade cancers. But that is only in general.

There is much more to know about your situation to give you valid advice. That is what your oncology team is there fore. You can ask them for discrete answers to all these questions. Like, what are the exact odds of recurrance of my cancer if I dont do radiation at all? What are the odds if I only do vaginal irradiation? What are the odds if I only do external radiation?

You can formulate a detailed list of these individual questions and ask all of them, expecting detailed answers. It is your right.

But always remember this: the radiation plans offered you have been developed after the industry has carefully considered the risks and benefits of radiation to your individual situation. And that is why the treatments are recommended to begin with.

Best wishes for your continued health.

bell_ella
Posts: 7
Joined: Jan 2012

http://www.cancer.gov/cancertopics/pdq

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

At my doctor's recommendation and explaining his rationale, I chose no abdominal or pelvic radiation.

I did, however, have recurrence in my supraclavicular lymph nodes. Interesting that all nodes tested at original surgery were clear. So when did that buggar get lose?? Would radiation have caught this? Who the heck knows.

These are challenging decisions to make. My best wishes to you, Mac.

Mary Ann

mac1
Posts: 9
Joined: Jan 2012

Thank You Mary Ann and God Bless you.

mac1
Posts: 9
Joined: Jan 2012

Thank You. The website had alot of good information and I appreciate your help. Best Wishes.

mac1
Posts: 9
Joined: Jan 2012

Thank You the article that you linked me to was definitely worth reading. I am starting radiation tomorrow. Best Wishes to you.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Have they offered you brachytherapy (internal radiation). I know I've read somewhere that there is supposedly less side effects with brachytherapy vs pelvic radiation and some studies have suggested it is just as effective.

I just completed radiation (both internal and external) and so far have had very minimal side effects but of course that doesn't address the long term effects so I can't speak to that.

Take care,
Cindy

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Hi All,
To update. July 2010 had Dx, surgery, chemo treatment four carbo taxol, two Doxil carbo, till end of Jan 2011. Then Meggace till October when 8 cm tumor found and surgically excised, no more Meggace, then three Gemzar Carbo. Then CAT and PET where new 'hot' spots found.

Yesterday, Tuesday, went to Interventional Radiologist. Chemo has had it's day,  'good' lymph node on right side has grown and is now 'uptaker' I.e. 'hot' on PET scan. Also questionable post op site from Oct operation to remove 8 cm growth and do colon resection, seems to to show uptake too.
Anyway Radiologist suggested starting this coming Sunday with 'mapping' and in a week or two IRMT external radiation he is suggest**** five times a week for six weeks.  He'll do it in horseshoe mode to get lymph nodes on both sides, even though problem just on one but also hit are near post op cervical area.
The 'good news' Onc tells me is that metastases are localized to pelvic area.
Now, warriorettes, I am looking to your combined wisdom on how to mitigate if not avoid side effects.
I am VERY concerned how my head, psyche, will handle being immobile for hour of radiation then hour break and then another hour, that is if I understood him correctly.
Can I watch my iPad?
Can I listen to my tapes? Mp3 player?
Help!

Sara

mac1
Posts: 9
Joined: Jan 2012

Thank You Cindy for sharing your experience. God Bless and I hope it all works in keeping you cancer free. I start the external tomorrow and the information has helped me decide what to do.

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