Radiation for 1C Grade 2??

Jan1948
Jan1948 Member Posts: 5
edited March 2014 in Gynecological Cancers (other than ovarian and uterine) #1
I was diagnosed with uterine cancer in Sept. 2006 following a complete hysterectomy. In November I had a lymph node biopsy which showed no cancer -- thank God! However, a week later the gynecology oncologist calls to say he's recommending radiation as a preventive measure. I took that news just as hard as when I heard I had cancer. My gynecologist was surprised that it's being recommended. My husband and I met a couple weeks ago with the radiation oncologist who recommends both internal and external radiation. I'm scared of the side effects as I do have a mild case of IBS, plus the beginning stages of lymphedema in my left leg. Radiation can worsen both conditions. I'm leaning toward NOT having radiation. If I decide on radiation, I may choose the internal but will need to stay in the hospital three to four days to receive it. I'll be going for pap smears every three months for one year and then every six months for four years. Is there anyone out there with a similar case as mine? The more I read, the more confused I get. It's been a real emotional roller coaster for the past three plus months. My gyno is bringing my case to the "tumor" board (hate that word) on 1/10/07 where a group of oncologists, doctors, and pathologist will review my case. I'm anxious to hear what they will say. And I'm just as anxious to hear comments from other 1C members out there. Thank you!

Comments

  • tlva
    tlva Member Posts: 56
    #2
    So sorry to hear your news, but would like to share my experience with you. I was 46 when this started....

    I had Grade 1, Stage 2b endometrial cancer and did have radiation. Internal and external. I had 27 external and 3 brachytherapy treatments.

    My diagnosis came after my annual pap showed that I was shedding endometrial cells and my doctor ordered more tests. The d&c revealed the cancer. I had a total hysterectomy and nodes were also clean. I had only 2 extremely small tumors...0.4 cm and superficial stromal; body of the cervix; invasion. It was all microscopic. That is the only reason I was a 2B. Location, location, location...as they say!!!

    My doctors, gyn onc and gyn, wanted me to go to Radiation Oncology for a second opinion. My Radiation Onc, left it up to me and I decided to have the treatment rather than regret it a year or so later IF it ever came back. The treatments were easy, did have some diarrheah and fatigue, which went away after finishing treatment.

    It will be 2 years May 6 and I am fine. I see my gyn/onc every six months and my radiation onc every 6 months, so that I am seen every 3 months by someone. I only have paps once a year. More than that is not recommended for me.

    There are risks with radiation, but those are unknown...CANCER is a KNOWN! Do your research at the MD Anderson Cancer Center site. For your stage and grade, they recommend radiation. The NCCN(National Comprehensive Cancer Network) also recommends radiation for you. My radiation onc gave me a copy of their treatment recommendations based on stage and grade. It is always based on individual pathology...no 2 women are alike.

    In a nutshell...if I had 2 doctors recommending it for me, I think I'd be inclined to go. Or ask for a third opinion. I know it is scary, but IF you have any adverse side effects, you can have surgery to correct it. You know what that means? It means you are ALIVE!!!!

    Hope this is helpful...write back if you need me.

    You are in my prayers...love and hugs to you!!!
  • groundeffect
    groundeffect Member Posts: 639 Member
    #3
    I can't say I've had your total experience, but I can tell you that your IBS may not really be IBS, but pain from the surgery because the intestines have to be moved around. I had really, really bad pains occasionally for almost a year after my surgery, but it's gone away, thank goodness. I know I have a narrowing in a part of my digestive system from the surgery (I had a colonoscopy when I turned 50), but everything else is fine.

    I guess anyone who has had a hysterectomy can expect some pain from adhesions, and because the intestines really don't liked to be moved around.

    Good luck with your decision about the radiation. My gynecologist made me feel better about what was recommended for me by saying that all the doctors really want to do is "win", and they want you to be a winner to make them win, too.
  • MoeKay
    MoeKay Member Posts: 495 Member
    #4
    Hi, Jan1948:

    I was diagnosed with surgical stage 1C, grade 2, endometrial cancer in April 1999. I had a radical hysterectomy, BSO, and pelvic and paraaortic lymphadenectomy. My gyn-onc said that I needed both internal and external radiation, which I completed in August 1999. I have enjoyed excellent health since completing treatment.

    In addition to my tumor having invaded approximately 80% of the thickness of the myometrium or uterine wall, I had a tumor that arose in the lower uterine segment. I also had extensive lymphvascular space involvement, although my tumor had not invaded any of the 30 nodes removed.

    I understand your concerns about lymphedema and IBS, and I did not have those concerns before I had my radiation. But I also would not have wanted to jeopardize my chances for long-term survival by undertreating my cancer either. I don't know what the best course of action is in your particular case, but I would ask your gyn-onc to clarify why he's making the radiation recommendation given the particular pathological findings in your case. Has he indicated how much does the radiation increase your chances of survival? I would definitely also want to get another gyn-onc opinion.

    Radiation is becoming a lot more patient friendly than when I had it almost 8 years ago. I would also ask about IMRT in your case (intensity modulated radiation therapy) which is much more targeted and likely to to result in fewer side effects.

    Best of luck and health to you!

    MoeKay
  • Jan1948
    Jan1948 Member Posts: 5
    #5
    Thank you, Tiva, MoeKay and Groundeffect for responding. The tumor board met this morning and I met with my gyn following that meeting. The consesus was to recommend brachytherapy, not external as it could affect my early stage of lyphedema in my lower left leg. So I plan to go with brachy which will include a two-three day stay in the hospital. I'm waiting to hear from my gyn's nurse as to what surgery days are available. I just want to get it over with. I don't look forward to lying on my back for 2-3 days and not being able to get of bed. Nurse said that your back can get sore. Would like to know of other side effects any one else has experienced during the procedure, i.e., cramps in the pelvic area, etc. So that's the latest on my saga. I feel much more calm now that a decision is finally being made. My gyn did tell me that I can still forget the radiation entirely, go for the frequent checkups and then if the cancer appears in the vagina, have radiation at that time. Doing it now will be added insurance.
  • tlva
    tlva Member Posts: 56
    #6
    Jan1948 said:

    Thank you, Tiva, MoeKay and Groundeffect for responding. The tumor board met this morning and I met with my gyn following that meeting. The consesus was to recommend brachytherapy, not external as it could affect my early stage of lyphedema in my lower left leg. So I plan to go with brachy which will include a two-three day stay in the hospital. I'm waiting to hear from my gyn's nurse as to what surgery days are available. I just want to get it over with. I don't look forward to lying on my back for 2-3 days and not being able to get of bed. Nurse said that your back can get sore. Would like to know of other side effects any one else has experienced during the procedure, i.e., cramps in the pelvic area, etc. So that's the latest on my saga. I feel much more calm now that a decision is finally being made. My gyn did tell me that I can still forget the radiation entirely, go for the frequent checkups and then if the cancer appears in the vagina, have radiation at that time. Doing it now will be added insurance.

    Hi Jan,
    I'm happy that you have taken your doctor's advice. My doctors told me the same thing...they believed the surgery alone healed me and that the radiation was insurance. I just had to know that I had done everything at the beginning and not live looking back over my shoulder.

    I had another checkup with my gyn/onc on the 10th also and he said everything looked fine.

    My 3 brachytherapy treatments were given on an outpatient basis so I'm not familiar with the procedure that you will have. Just think no house work, no laundry, no phone calls, no cooking, no one to fight over the remote control with...oops...that's my husband!!! Three days of peace and quiet and time to pray and be at peace with God. Look at it as a mini retreat from the world.

    I'll be praying for you and your family...you will be blessed!
  • kellyw314
    kellyw314 Member Posts: 51
    #7
    I received the same diagnosis in June 2006 -- I had 60% penetration of uterine wall and was scheduled for 25 external beam treatments and 3 internal treatments. Radiologist described it as a "prudent plan for insurance" and moved from 95% predicted cure from gyn/onc to a 98% cure rate following radiation treatments. I had treatments from mid-August thru mid-September 2006. During treatment, radiologist changed my protocal to 27 external treatments due to the fact that my tumor had been confined to the upper third of my uterus. I did have some bowel discomfort during radiation, but resolved with otc immodium. Follow up visits with gyn/onc have been very positive with next appt scheduled in Feb. I hope for same results. Good luck with your treatment and consider it as "good insurance".
  • Jan1948
    Jan1948 Member Posts: 5
    #8
    kellyw314 said:

    I received the same diagnosis in June 2006 -- I had 60% penetration of uterine wall and was scheduled for 25 external beam treatments and 3 internal treatments. Radiologist described it as a "prudent plan for insurance" and moved from 95% predicted cure from gyn/onc to a 98% cure rate following radiation treatments. I had treatments from mid-August thru mid-September 2006. During treatment, radiologist changed my protocal to 27 external treatments due to the fact that my tumor had been confined to the upper third of my uterus. I did have some bowel discomfort during radiation, but resolved with otc immodium. Follow up visits with gyn/onc have been very positive with next appt scheduled in Feb. I hope for same results. Good luck with your treatment and consider it as "good insurance".

    Thanks for sharing. My cancer was also in the top part of the uterus -- 53% penetration. I'll receive my brachy starting Monday, 1/29, and will be in the hospital for 2-3 days. The radiation center here in Willmar, MN does not have the outpatient equpment for brachy. I won't be receiving the external, however, I wonder if there's a better chance for it to go elsewhere rather than the vagina. Anyway, I wish it was over and soon it will be. External is not being recommended due to beginning stages of lymphedema that has increased lately to the removal of lymph nodes in November. Wishing you the best at your future appts!

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