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afraid of radiation

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

I have stage 4 uterine cancer- have had carbo/taxo for 6 rounds. Started radiation then freaked out
because of the burning sensation. Stopped after 4 days. Now the burning is worse, so I
think it's the tumor - not radiation. Should I go back on radiation. I'm afraid it will give me
more problems. The radiation is just to shrink - no cure.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm afraid of it, too. I finished my 6 rounds of carbo/taxol in late March, and have an appointment tomorrow for my radiation simulation, tatoos, & their special 'positioning' CT-scan. My radiation is precautionary; they don't see anything there. And yet I am scheduled for 25 to 28 rounds of external pelvic and then 3 vaginal internal rounds. Believe me; I can understand your fear; I'm terrified of the possible long-term side effects and more than a little apprehensive about the treatments themselves. But I plan to do it, all of it, if my bone marrow holds up to get it all in. If it is just fear, perhaps you could talk with someone and be given a mild sedative. What do they say will happen if you quit now? BIG HUGS!! I hate this, too.

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

If I quit now the tumor will rapidly grow back - also smaller cancer cells in area that will grow.
Spoke with chemo doc today - he thinks that chemo has done what it can for now - so it seems
that radiation is the ONLY possible help for the pain. I've got a call in to radiation doc to see
if we can adjust treatment. Turn it down a notch? I'll let you know what happens.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am sorry you are having so much burning with your radiation treatments. I had my 6th radiation therapy treatment today and I have not had any burning, or even know that I have had any treatments. Every day the staff asks how I am feeling or if I have any problems. I don't know if the dosage is too high that it is burning you. I would certainly ask to talk to the radiation onocologist. Before I have my treatment I have to have a full bladder. My doctor said it is easier to treat any bladder side effects than the bowel side effects. He said the full bladder pushes the bowel out of the way so less radiation gets to the small bowel. Good luck with your decisions. I will keep you in my prayers.

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

Thanks for responding. It gives me courage, as I return today for another go. The doc has
agreed to 5 weeks instead of the planned 6 - which seems to make things more
manageable - and I can always add a week if I'm up for it. I will also talk to him about reducing the
radiation strength until my body adapts. Huge thanks for the bladder tip. I hadn't been told that
but it's easy enough to do!

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Linda other than the exposing yourself for the radiation therapy staff, the radiation is much better than the chemo was. It does not take very long, less than 10 minutes after the first couple of days. (my chemo days were 8 - 9 hours long, and that is with going for lab and doctor's appointment the day before). They get you positioned on the table (in your butt mold) and the machine does it's work. There are four areas that they radiate for me. I only have three tatoos though. I thought the machine was just going under the table, but I asked and I do get radiation when it goes under there. Another thing I don't like is that they take pictures of the areas they are radiating to put in the chart. I figure if it helps it is all worth it.
Now the internal radiation is another story. After hearing Deanna's experience, I am not looking forward to it, as I will have to be in the hospital for several days with that thing inside of me. I hope the hospital staff here is more compassionate than Deanna's staff was. I am impressed with this radiation therapy staff, but I am sure it will be different staff for the internal radiation, except for the doctor.
Hang in there and we will get through it. HUGS to you.

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

I can't imagine internal radiation! How scary. I feel like a wimp putting up such a fuss about
regular radiation!

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

I have just completed my 17th session of external radiaiton I did not have any burning in fact i felt nothing. I am having some bladder problems but are very managable with medications. My bowels are loose once in a while but Imodium helps. Ask you radiaiton staff if there is another postiton to lay in that might be more comfortable. I lay face down on my stomach for my treatment this pushes the bowel out of the way and a full bladder pushes it even more. My treatment take 7 minutes and i get to pick the music being played in the treatment room. I find that having more control over my treatment is helpful. Good luck and please keep us all updated. I will have internal radiation after external is completed i am a little afraid of this but this whole thing CANCER is scary

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Looks like I'll be getting 28 rounds (instead of 25) of external pelvic radiation, to be followed by the 3 internal vaginal brachys. Today I got my 3 little tattoos and had my 'positioning' CT-scans. They had to call in the "IV team" to get the needle in me for the contrast, after 2 others tried and couldn't get a good vein. (I guess my veins are all shot now from the chemo). They used a 'vaginal marker' to help with 'lining me up' during the simulation. I start the external radiation April 30th (5 weeks from the day of my last chemo) and will finish up June 9th, with treatments every day Monday to Friday, except for Memorial Day. Sooooo, if the 3 brachys start the next week, I could be 'out of treatment' by July 1st! That will coincide with my next CT-scan, so I can only pray that the tiny 'nodule' on my lung is gone on that scan and I can be NED and in remission by Independence Day! I can't even imagine how devastating it will be if I have to go back into chemo right away; I can't and won't even think about that. The only thing that makes me eager to start the radiation is that I sooooo want all this 'doctoring' to be over, and this is the last lap of my initial treatment protocol.

deanna14
Posts: 743
Joined: Oct 2008

I am so sorry if I worried anyone with what went on with my internal radiation. Again, the treatments were not painful! It was just that the staff doing the procedure were inconsiderate!

Linda, do you know why your doctor decided on the 28 treatments over 25? Just curious and wondering if some new data is showing that 28 is better than 25. I am going to pray for your peace of mind in regards to the lung spot. I believe that you are NED, but I know your mind will probably not completely rest until the next scan is clean.

I think you are all brave, brave ladies and I am so glad to have "met" you all.

Deanna

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

Hi Linda, I also have a lung nodule which diminished with chemo, although they think they haven't seen the end of it. What stage
are you? Do they think that the radiation will clear the cancer? Where is your pelvic turmor?

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

Hi Linda, I also have a lung nodule which diminished with chemo, although they think they haven't seen the end of it. What stage
are you? Do they think that the radiation will clear the cancer? Where is your pelvic turmor?

bonniesue
Posts: 126
Joined: Apr 2009

good luck. I am new to this and my mom was diagnosed and had surgery in Feb. 2009. she was having no symptoms. after the Hysterectomy they said all was good. Now the surgeon says she needs just brachy but the rad. oncologist says she needs both 27 external beam txs and the 2 brachys. i am scared due to no consensus. bonnie

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

I'm concerned about how they decide # of treatments. How many will you have? They wanted to do 33
on me - have talked them down to 25. 33 seems to be asking for trouble, i.e. side effects. What stage
is your cancer??

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm Stage III-c, and they show no evidence of any tumor or disease in my pelvic region. I did have a pelvic lymph node with microscopic cancer cells shown in my pathology, but that was removed with my original surgery. So my radiation is all 'precautionary', and is a standard part of "going for the cure". My radiation said "25 to 28 rounds of external pelvic radiation" , and the calendar they gave me has all 28 scheduled, but I think they actually plan to take it that far IF my body holds up to it. I may not be able to make the full 28, as I have had trouble with my hemoglobin counts since my 3rd round of chemo, and I know that radiation affects your bone marrow. There is no tumor that they are targeting with this, my pelvic region looks clean on the CT-scan.

bonniesue
Posts: 126
Joined: Apr 2009

my mom who is a young 71 year old and had a completete hysterectomy. After surgery they said they got it all but a week later the surgeon said she needed brachy therapy, then the following weeek the rad. oncologist said she needed both. the surgeon said it was over the top to get both. She had six pelvic lymph nodes taken-all neg,. and neg washings. depth was 1.2/1.4. They told her she would be on her back for 25 treatments and to drink water to push the bowel away. Where are you going for treatment and what was your stage? I am worried because of differing ideas? bonnie

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hi, BonnieSue! What type of cancer does your mother have? A lot of the decisions on radiation and chemo have to do with the TYPE of cancer cell. Aggressive cell types like papillary serous and clear cell usually call for some type of additional treatment beyond surgery regardless of the stage, since they are sneaky cancer cells that exfoliate and travel in microscopic form and then begin to grow later and cause you added heartache. So if you have an aggressive fast-growing cancer type, they like to do precautionary treatments after the surgery to make sure no calls are hiding anywhere else.

I have UPSC Stage III-c, and this papillary serous type of uterine cancer is one of those dangerous aggressive types that requires a LOT of additional treatment after surgery, even if all indications are that they 'got it all'. Actually your mother had a very small number of lymph nodes removed. I had 25 lymph nodes removed and the cancer was only found in 1 of the 25, in microscopic form. Your radiation oncologist may be concerned with the small number of lymph nodes for diagnosis and therefore want to be more aggressive, while your surgeon may be defensive about the small number of lymph nodes he/she removed. (Had my surgeon only removed 10 or so lymph nodes, he could easily have left in the one node that had the cancer in it, and I would have been incporrectly staged.)

Please see if you can find out what TYPE of cancer cells your mother is dealing with. If she has the more common type of uterine cancer, then I wouldn't want you to be frightened by our posts and the aggressiveness of our treatments, as MOST uterine cancers are not nearly as aggressive as UPSC. But if she has a more aggressive type of cancer, I would err on the side of 'too agressive' treatment with that small number of lymph nodes determining your mother's staging. ((((BonnieSue)))).

bonniesue
Posts: 126
Joined: Apr 2009

Thanks for your thoughtful quick reply. My mother was asymptomatic, energetic, working and has always been health conscious when she had a CT scan for kidney stones it was detected in Oct 2008.. NO vaginal bleeding or anything.They felt it was endometrial thickening that deserved to be biopsied but would probably be nothing. It turned out to be endometrial cancer endometrioid with focal squamous differentition FIGO grade 1. She had her Davinci robot Feb. 2009 with six pelvic nodes taken and pelvic washings negative and then the surgeon came out post op and said all was great. 2 weeks later after path --the grade was the same, questionalble lymphovascular invasion which they thought was artifact, depth of myometrial invasion 1cm/1.4 and 1.2/1.4. lower uterine segment involvement.I am reading off path report. this caused me to send her path report for a second opnion which agreed but said cervical stromal involvement which has been argued against-- making her a GRADE1 stage1c or 2b. the surgeon was adamant about just needing 4 high dose brachy but the rad. oncologist said 27 IMRT and 2 brachy. This has caused me nightmares because they left the decision to my mother who has no medical training and the fact that endometrial cancer is rare there is not the immense consensus like other more common cancers. there are 37000 cases diagnosed a year and NO screening tests. It is silent. My mother never missed a pap smear and has always done everything she is supposed to. Also the follow-up for her is every 3 months to the gyne oncs. He said no to CEA. I had her get a Petscan/CT fusion 2 months post-op because a radiologist recommended it and that was negative. Uterine cancer pts need to enroll in the NOPR(National oncology pet registry study?) because PET/CT has not been approved for Uterine cancer but is for other cancers due to the small # of uterine cancers. There is a study to help with staging. Anyway, I am distraught and want the best for my mom with the least complications. I asked about the small node sampling and was told there was not a huge amount of nodes to be gathered as my mother is very thin. I asked if they should go in and get more. i was told no as it was too much a risk and the para- metrial tissues were negative. Anyway, this is long..sorry. I am frightened. Bonnie

deanna14
Posts: 743
Joined: Oct 2008

It sounds to me like your mother has the less aggressive (endometriod) form of uterine cancer. It tends to be less aggressive from what I have read. Many of this posting on this board have UPSC as Linda said. We are all receiving very aggressive treatment due to the aggressive nature of this type of cancer cell. Even in the earlier stages, UPSC warrants aggressive radiation and chemotherapy.

I have found that my gyn/onc and my rad/onc frequently disagree. I take the advice of the rad/onc about radiation and the advice of the gyn/onc for chemo. These are their specialties. My gyn/onc deferred to the rad/onc for a recommendation for my radiation therapy. I think you would find that this is normal. Just a difference of opinion, and the radiation oncologist is the expert when it comes to radiation, so I would fell quite safe going with his rec. However, if you are feeling uncomfortable with this, I would encourage you to get another opinion. It is never out of line to get another opinion if you are not comfortable. A good physician will not take this as an insult, but rather encourage you to seek another opinion.

I understand your being frightened. Cancer is a very scary illness. It sounds like your mother's cancer was caught very early and that you have every reason to be optimistic. Thank God for the CT scan for kidney stones!

Can you elaborate on the NOPR PET/CT study... I would be very interested in being a part of this. Is there any other information that you can provide about this?

I'm glad you found this site. There are very helpful, supportive and strong ladies here. May God Bless you and your mother.

Hugs,
Deanna

bonniesue
Posts: 126
Joined: Apr 2009

Deanna, thanks for your thoughts. I am still finding my way around this site and sometimes cannot see the replies. May god bless you also. the NOPR study which is by the government and I believe the scans are paid for as you are in a study. The very helpful person was my mothers family doctor. He wrote a script for Endometrial cancer and put her stage on the prescription. He also wrote PET/CT fusion as you need the combined machine. They give you radioactive sugar through the IV prior and I guess low false positives and negatives. Sugar goes to where there is tumor and lights up if there is uptake. The place she had it done was a free standing center and they faxed the paperwork for her doc to fill out and fax back. The gyne onc was not really interested in the test so it was easier to go to the primary care doc that was open to it. I am thankful a radiologist mentioned it to me. Thanks for your kind words. Fran Dreschar's book Cancer Schmancer has helped my mother a lot. I have felt a lot of compassion from even strangers as I am a big crier and my mom is my right arm. I am thankful it was picked up or we would not have known. It is ashame there is not a marker like for prostate PSA but I hope to be a beacon of knowledge to help people know that a negative pap should not drop your guard. My mom had fatigue for a good year. Even if you go to a doctor for check-ups you must be vigil when your body talks quietly to you. If you know of any markers please let me know. the gyne onc said none. No one has mentioned chemo so the more I google and ask questions the more I think there is no consensus but I felt the rad onc probably knew more on the radiation topic however I am afraid of pelvic radiation and the possible complications and wonder who has the best machines and what not. And the long term bowel problems or damage or cancer caused by radiation. I am trying to be positive but my mom knows me so well it is hard to hide my emotions. Best, Bonniesue

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

It does sound like your Mother has the less aggressive type of cancer. That is a blessing for both of you. Glad you found this site to get some of your questions answered and hopefully calm some of your fears. I would echo what Linda and Deanna have said. When I asked my ob/onocologist about the radiation therapy treatments, he said it was up to the radiation onocologist to decide what the best treatment plan would be. So as Deanna said the medical onocologist handles the chemo and the radiation onocologist handles the radiation therapy treatments. I started my radiation therapy treatments last week and have not had any problems with them yet. I had three chemo treatments before I started the radiation therapy. I have UPSC III-C so I too need the aggressive treatment plan.
As Deannna said cancer is very scary, just to hear the words about someone you love. It is very hard for the person and their family, too. Finding out all you can about the cancer and asking questions is helpful to calm some of the fears. You said your Mother had no symptoms. Unfortunately many of us never had any symptoms either, and have this serious cancer. We were shocked when we got the stage of our cancer. We all hope and pray we have the right treatment plan that we can all show "no evidence of disease, NED. You and your Mother will be added to my prayer list. Take care.

bonniesue
Posts: 126
Joined: Apr 2009

Ro10, thanks for your reply. I am just getting used to this site and I wish you well and my thoughts and prayers are with you. I am glad you are tolerating all well.bonniesue

deanna14
Posts: 743
Joined: Oct 2008

Bonniesue,
I finished my radiation treatments in December and as far as I can tell, no lasting side effects from it. I was very tired in the afternoons with radiation and had a few loose stools if I didn't stick to the low fiber diet. I took Imodium for that and it helped. My bladder was a little bit fussy after radiation for several hours, but I am finding my bladder to be a little fussy at time now. So I don't know if is really from the radiation, surgery or just the whole process I have been through. I do have some leaking now and the doctor said it could be decreased bladder capacity due to the radiation. It is not really a huge issue as long as I don't let my bladder get too full. I don't have any lingering bowel issues. They were easily aggravated during txs and the recovery period for a couple weeks. Now they are back to normal.
You ladies hang in there. I will pray for you as I do all of us that post here. Sounds like your mom is strong and will do well with the radiation treatments. God Bless, Deanna

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

Welcome Bonniesue and mother. I'm also UPSC. I checked out the website you mentioned and it looks like the study is for medicare/medicaid eligible people. Is that correct? I'm not 65 yet so assume I would not qualify. But the PET scan issue is a big one for me. I have been fighting with my insurer (Aetna) for awhile about this issue. Still in the appeal process. I think we need all the tools available to us to help diagnose and treat our aggressive cancer and the PET seems to be the newer technology that can help. Unfortunately it also can give false positives - which I hope is the case for me since I had lots of lit up areas on my one and only PET last Oct. The uncertainty is anxiety provoking to say the least. I am choosing to believe and trust my new doctor on this issue. He is trying to get another one approved.

Keep us posted on the PET scan issue.

Mary Ann

bonniesue
Posts: 126
Joined: Apr 2009

My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue

bonniesue
Posts: 126
Joined: Apr 2009

My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue

bonniesue
Posts: 126
Joined: Apr 2009

My mom is 71 so it might be but-- the radiologist said you must have the machine that is a combo PET/CT fusion combination machine-- also they gave my mom a list of instructions as she could only have protein and no sugars or carbs the day before and of. She had to be well hydrated and was told to limit her activity prior to the test night before and day of. This cuts down on false positives from what I understand. I understood that the PET/CT fusion together is more accurate than either. I am happy your doctot is progressive. They thought my aunt had lung cancer and they ordered a PET/CT right away but for uterine cancer which is much rarer I think that insurance balks until more studies which they will get by these studies. Maybe contact the place where you will get the scan and have your primary doctor fill the paper work out to enter you in the study which I believe is gevernment funded. all the best and I wish you well. bonnie sue

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

I did have the PET/CT fusion. I will inquire with my doctor about the study or call them myself to see if age is a factor. I should know this week about my appeal status. It really is ridiculous that we have to fight to have diagnostic tests. My insurance would pay if it was ovarian ca. Go figure!

Take care and thanks again for the info. Mary Ann

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

Hi I am 52 so not medicare , I had a PET/ CT, had to sign a waver in case the insurance did not cover. From what I have found in researching it, the PET at this stage is being studied in Uterine cancers looking for recurances.
The reason mine was ordered was because the surgeon did the frozen section in the OR and because myometrium invaded> 50%, did pelvic lymphadenctomy, HOWEVER since the grade was only grade 1 she felt that the risk of mets was very low, (and at that time she did not know that the pelvic lymph nodes were positive because it was microscopic) she opted not to do paraoaortic lymphadenectomy.

She subsequently felt that this "grade 1" was not behaving like a grade 1 and so opted to look closer at the paraortic nodes. with the PET.

It was negative, not sure how this holds up against tissue microscopy.

My insurance covered 3000 of the test and I will have to pay the other 900

I have also recently read where they are advocating the use of PET/CTs in follow up after therapy.....say ....when the ca 125 goes up.

Apparently PET is better and more approved at picking up recurrances vs primarys.....not a lot of data though
janet

bonniesue
Posts: 126
Joined: Apr 2009

Mary Ann-my reply came three times. It looked like my computer froze and I am not the best with computers. bonnie

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

With my surgery she did a complete pelvic lymphadenectomy even though they all looked normal (because my myometrial invastion was greater than 50%)
However 2 came back positive.
WHen I saw the complete path report I was surprized by how few lymph nodes there were in total given the TOTAL lymphadenectomy.
THe surgeon told me that the number of lymph nodes a person has is totally dependant on their weight and heavier people have more lymph nodes
I think that the better question to ask is whether they took them ALL, or whether they just sampled them.
I think my total lymph count was only about 12, yet the gyn/oncologist said it was a VERY clean resection and she felt certain there were none left.
janet

bonniesue
Posts: 126
Joined: Apr 2009

jankenb, Hi, I have been worried since only six pelvic lymph nodes were taken and were neg. and no pariaortics. He told me that she(my mom age 71) did not have many and he stripped them. He did not do a fresh frozen from what I could see. It is worrisome to me and I have asked should they go in and resample and it seems the answer is no. her pelvic washings were neg. My mom is thin and he said very few nodes. Her myometrium was 1.0-1.2/1.4 invaded. Did you need pelvic rad and what grade and stage were you? The surgeon says that 2 years ago he would have just watched her with no brachytherapy yet now she is supposed to get pelvic 5 wks and internal radx. Did you vave robotics? Thanks bonnie

kellyw314
Posts: 51
Joined: Jan 2007

I was diagnosed with stage 1-C endometrial cancer in May 2006 - complete hysterectomy with clean washing and lymph nodes - cancer had penetrated to 60% of uterine wall so gyn/onc referred me to radiation for 25 external beam treatments - met with radiologist and recommendation was for the 25 treatments and 3 internal treatments -- midway thru treatment radiologist changed the protocal based on her research - changed to 28 external with no internal due to my tumor located in the upper third of my uterus - most often a recurrence will occur in the vaginal cuff and within 2 years of surgery - ironically radiation machine was scheduled for maintenance on my 28th treatment which would have required my returning on a Monday - she adjusted the levels of radiation on Tuesday thru Thursday and my treatments ended with 27 sessions on that Thursday- have had minimum bowel issues resolved with immodium and never had bladder issues - fatigue was not an issue and the treatments lasted less than 10 minutes each session - more time spent adjusting me than the sweep of the machine kellyw

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

Are you done with all treatment now? Sounds like you responded well to radiation with minimal side effects. Congrats.
Mary Ann

pacarini
Posts: 6
Joined: Jun 2010

Have you had a recurrence since your treatment? I have same diagnosis but doctor only recommended three brachytherapy.

kellyw314
Posts: 51
Joined: Jan 2007

Yes my treatments were completed in Sept 2006 = visit with gyn/onc this June for 3 year check and hope all continues to be fine kellly

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