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Brachytherapy ???

Ribbons's picture
Ribbons
Posts: 71
Joined: Jan 2019

I just had the first of 3 brachytherapies, (after 6 rounds of chemo.) I am feeling no side affects at all from the brachy, so of course my mind is wondering if it really does anything? Seems like if I don't feel anything then it must not be working LOL. It gets very confusing with too much reading, should I have IMRT, is brachy good enough, and then there is all the stuff my helpful cousin sends me about all the special diets that cure cancer in other countries, and how everything I am doing is wrong, ugh! Sometimes it is just too much information almost! I had 22 lymph nodes removed and all were negative, I did have slight LVSI. Just had a CT and everything was normal. A tiny lung spot that was there before is still there and is the same. It was biopsied before my hysterectomy and determined to not be metatastic. I just don't want any external radiation at least at this point.  I was 1A and grade 3 for clear cell. I want to support everyone elses decisions, but I just don't feel like I should have any more radiation than the brachtherapy. ?? Maybe my background has influenced me so much so that I am unreasonably scared of radiation. I was 13 when my Mom died from breast cancer, This was back in 1966, She had a radical mastectomy and was ok for 3 years and then the cancer came back and she didn't last long after that. I remember what the Drs put her through with that, she was 49. Then my Dad died from prostate cancer when he was 83. They did a bunch of radiation on him towards the end and he reacted really badly to it. By the way, I did have some kind of gene testing done and it was negative, but I'm not sure how thorough that test was.

Lulu7582's picture
Lulu7582
Posts: 112
Joined: Jun 2018

Due to my recurrence so soon after the hyster and I was stage 1A, grade 2 ....now just my personal opinion but I would do everything possible to prevent any little beasts from even thinking about setting up shop in my body. I know a lot of the other ladies on here have had both types of radiation so they can give you more info about their experiences. 

But again I am very biased after my journey, however it's your body and your decision so talk it over with the docs and then make an informed decision that you are comfortable with. xo

 

zsazsa1
Posts: 290
Joined: Oct 2018

Ribbons, the only reason that I am going ahead with the IMRT to the pelvis is that I had isolated tumor cells in one of the two sentinel nodes that they sampled (and my surgeon didn't sample ANY others, which I'm really not happy about - I consider myself to have had inadequate staging).  And my tumor was in the upper part of the uterus - lower segment was clean.  And with all that, ALL three medical oncologists whom I've consulted are ALL recommending I do ONLY brachytherapy.  The radiation oncologist is willing to do IMRT because I had the cells in that one node.  But the standard for what I have, even with the isolated tumor cells in that one node, and most definitely for what you have, is only brachytherapy.

You are having what is standard of care treatment.  I am a medical professional, I have done a tremendous amount of research, and consulted with lead authors on recent studies, and with radiation oncologists at leading institutions.  And if I had had 22 nodes sampled, and they were ALL negative, and I could be sure that I was really a Ia, I would definitely have only the brachytherapy.  

You shouldn't feel anything - if you did feel anything now, that would be a sign that they were doing something wrong.  It takes time for radiation damage to the tissue to show itself - and there will be damage, that's why you get vaginal stenosis afterwards if you don't use a dilator.

Ribbons, don't worry.  You are right to follow your physicians' recommendation, which seems to be the right thing for your situation.

Ribbons's picture
Ribbons
Posts: 71
Joined: Jan 2019

Thank you so much for the reassurance! I really appreciate that. Its good to know that you have a lot of information , thank you. My niece is head administrator at a large well known college and I have sent all my pathology reports to her. She shows them to her pathology guy and he has agreed with my Drs decisions.

janaes
Posts: 739
Joined: May 2016

I had MMMt uterine cancer stage 2 grade 3. The MMMt was less involved than they originally saw at the biopsy. I had just bracytherapy for this reason. I allready had another cancer 20 plus years before and had lots of radiaton for that cancer. The radiation was done right above where they would need to do it for uterine cancer. My doctor would not do external radiation because of that. The doctors also told me the previous radiation caused this cancer. So my desision was just bracytherapy

It seems that everyone has a different story. Its been 2 years and 4 months and have had no reacurance. I just had a ct scan in november an d although my doctor wants me to do a colonoscopy becouse of thickening near the blatter ( i think that is what it said) the doctor isnt worred about it being cancer related.

Mostly wants me to do it because im old enough to do it like every one else has too.

Im glad mine has not come back. If mine does i think ill still be okay with my desision. I wouldnt like that it came back but i really thought long and hard about what to do.

Thats what i would say. Can you live with your decision. If you can than i think thats what matters

Denise66
Posts: 56
Joined: Aug 2018

My cousin had stage 1a clear cell back in 2008. She had chemo and Brachy. I’m not certain if she had internal radiation. She was diagnosed at 63. She died at 71 unrelated to her cancer. Her cells were contained to the endo lining. Not sure if this helps or not. But, wanted you to know someone else who had your stage and grade.

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

Ribbons, I was diagnosed with Grade 2, Stage 3A endometrial cancer (2005).  I had it in my left ovary, cervix and uterus.   I had 6 rounds of chemo (twice a month).  I was allergic to Taxol so they gave me Gemzar and Carboplatin.   After finishing chemo, my gyne/oncologist wanted me to have whole pelvic radiation.  My radiation oncologist advised against it.  he indicated that the long term effects of the radiation was more detrimental for me than not getting it done so he advised against it.  They did agree though to the HDR Brachytherapy.   I had 3 rounds of that.   I've had 2 recurrences since then.  None needing any more tretament - just surgery.   

My radiation oncologist also indicated that if I got radiation that it could not be done again so he wanted to wait to use it for or if I really needed it.   The radiation oncologist at the time indicated they did not know what the long term effects were of getting radiation, other than scarring.  And since I seemed to have a lot of scarring already, it would not be a good option for me.

The brachythereapy did cuase me to get a blockage in my left ureter right above the bladder.   I had to have a stent put in.   I eventually had a ureter reimplantment surgery so that I didn't need to have the stent changed every 3 months for ever.   I had that done in Dec. of 2015.

And my most recent surgery, I did have a tumor by my recturm and by my vaginal cuff.   Albiet very slow growing.  But I got a positive biopsy so I had the surgery in April 2018.  Still no other treatment other than the surgery.

Like others have said, it has to be your decision.  Everyone is different and you have to do what is right for you.

My best to you.

Kathy

 

Luckyluke
Posts: 55
Joined: Feb 2019

Kaleena I  was wondering if you had signs of a tumor and that is why they recommend  radiation or just protocol. I was diagnosed  with  STAGE 2 serous endometrial  cancer and gynonc recommends 3 chemo radiation  and  3 chemo.  I'm  kind of leary of the radiation  treatment  if there are no tumors to direct it too. All nodes tested where clear and pelvic wash clear so I am thinking what kind of test can they give me to check for tumors before they just start radiation. I'm  looking at just wait to see if there is a recurrence  and then do the radiation. Maybe someone  out there  has had the same question .

Kaleena's picture
Kaleena
Posts: 1928
Joined: Nov 2009

there were no visible tumors at the time.   When I did have a recurrence I was able to have surgery to remove the tumor and lymph node without the need of additional treatment.   I went on a watch and see approach.   I did recur again and once again had surgery to correct it with no treatment.   I’m trying to hold off on any treatment unless it is absolutely necessary.    In my case I was able to do that because they were about I remove the tumor.   In my most recent surgery they removed a tumor for cancer cells in it a positive lymph node and another area near my vaginal cuff with a tiny area of cancer cells.    No treatment.   Just scans every 3 months.  If my next scan in May has stayed the same they will make it 6 months until next scan

zsazsa1
Posts: 290
Joined: Oct 2018

I've done a ton of research.  They're definitely right to recommend the brachy, too.  The reason is that it reduces recurrence in the most common area, the vaginal cuff, with minimal side effects.  I'm happy for you that all nodes were negative, along with pelvic wash.  But serous metastastasizes very readily, and if yours was FIGO stage 2, that must mean that there was local extension.  The problem is that if there's a recurrence, it's much more difficult to manage.

Luckyluke
Posts: 55
Joined: Feb 2019

Hi ZsaZsa1 I haven't  met with a radiologist  as yet my oncologist said to start the chemo first and then we would set up to meet the radiologist.  I will see the oncologist  next week before my second round of chemo and I was going to ask if he was talking about brachy or pelvic or both. Just concerned  about my colon or bladder being damaged  from the radiation . I can understand having the brachy due to the vaginal cuff and that they removed  everything through the vagina. 

DM_K's picture
DM_K
Posts: 46
Joined: Mar 2018

I had 30 external radiation.  I was concerned about my bladder being damaged too.  The tattoo markers they place on your abdomen (BTW the ones they place on the hips hurt me like heck), the bottom one was way above my bladder.  I think they try very hard to stay clear of certain organs.  My disease was extensive and the reason why radiation was recommended for me.

I was just recently told my cancer came back, and this was only after 3 months of finishing treatment.  I am USC stage 4.

Luckyluke
Posts: 55
Joined: Feb 2019

I am sorry to hear you had a recurrence and especially  so soon after treatment. I am new to the board and still finding my way around . There is alot of great information  here that has really helped me alot.I wish you all the best in finding a chemo that will knock it out.

LisaPizza's picture
LisaPizza
Posts: 207
Joined: Feb 2018

I'm not sure if the tattoos actually indicate where the radiation starts or ends. I think they just use them to make sure you're in the exact same positioning during treatment that you are during planning. 

zsazsa1
Posts: 290
Joined: Oct 2018

LuckyLuke, what histology was your tumor?  Where did it extend to, that they called you a FIGO stage II?

Luckyluke
Posts: 55
Joined: Feb 2019

Hi ZsaZsa1 it extended into the uterine wall slightly and I  believe into cervix. I would have to go back and read the pathology report

Luckyluke
Posts: 55
Joined: Feb 2019

ZsaZsa1  I went back and looked at the report it reads. Tumor invades cervical stroma but does not extend beyond  the uterus. Also said the tumor involves both endcervical mucosa and stroma.

zsazsa1
Posts: 290
Joined: Oct 2018

Was yours endometrioid?  If so, what grade (meaning how aggressively malignant they thought it was, the higher the worse)?  Or was it serous?  Clear cell?  Mixed?

I have a feeling that from the location, they're going to recommend brachytherapy for you for sure.  I don't know if they would recommend whole pelvic.  Mine was in the upper uterus, and had isolated cells in one of the two sentinel nodes, and STILL the medical oncologists were only recommending brachytherapy.  Some radiation oncologists (from two major academic research centers) recommended whole pelvic, using intensity modulated radiation therapy, which tries to hit the lymph nodes while minimizing damage to the bladder and bowel.  But the risks of radiation damage are much higher with whole pelvic than with just brachy - leukemia down the road, damage to the bowel and bladder, adhesions and blockages, damage to the ureters.  It was a very hard decision.  But because I have serous/clear cell, which is much more aggressive, and cells HAD gotten out of the uterus, I finally decided on the IMRT to the pelvis.  I figure that if it decreases my chance of recurrence of this highly aggressive cancer, and years down the road I pay for it with complications as a result of the radiation therapy, so be it.  I just hope I don't wind up with bowel and bladder/ureteral damage in the near future.  And of course, if I have a distant metastasis, it will all have been for nought.

Luckyluke
Posts: 55
Joined: Feb 2019

It is serous yes you probably are right. All we can do is get the treatment  and hope for the best.I appreciate  your information thank you

zsazsa1
Posts: 290
Joined: Oct 2018

LuckyLuke, I think they are going to recommend vaginal brachytherapy for you plus 6 rounds of carbo/taxol.  Local team told me to have the chemo first, and then the radiation.  But Yale told me to have the radiation during the chemo, as soon as my vaginal cuff was healed.  Problem was, my cuff's healing was slowed by the chemo, so I really wasn't healed until the chemo was almost done.  

You need to have the radiation done to prevent local recurrence.  The good news for you is that all the lymph nodes and the pelvic wash were negative (YAY!!!!), so you can have only the vaginal brachytherapy, which is less damaging than the whole pelvic radiation.  The vaginal brachytherapy is very good at preventing local recurrence, for which you are at high risk, because the tumor was invading the cervix.  The sooner you can have it, the more effective it will be - which was why Yale advised me to have it done as soon as I was healed.  Hopefully, you will heal up sooner than I did, and be able to have the brachytherapy early on.

Luckyluke
Posts: 55
Joined: Feb 2019

Thank you ZsaZsa1 for the information I  go next Monday  to the oncologist  and see what is the plan and I feel  I did good with the first round  of chemo. Praise God  I only got sick on day 5. Felt yucky but only threw up once. Nausea  meds didn't  prevent that. Had a lot of bone pain but after a few days they told me to try clarion that it might help and thankfully it did. Was suppose to get neulasta shot but insurance  said no so I had to go everyday for 5 days for a shot called zarxio for white blood cell production. Tuesday will be round 2 if all goes like round 1 I will be thankful. Appetite  from day 1 to day 8 wasn't  bad I could eat healthy just craved weird combinations..After that I  seem to be eating everything nonstop. Although all good foods, I  figure I  will  eat when my body says eat and store it up in case I'm  not able during round 2.

 I ate smaller portions throughout the day and then after about 10 days i was able to eat normal.

 

 

Dedifferentiated
Posts: 2
Joined: Feb 2019

anyone out there know about this?

zsazsa1
Posts: 290
Joined: Oct 2018

Differentiated means that the cells are still showing features of what they came from.  The more differentiated a cell is, the less dedicated it is to simply being an aggressive cancer.  So the more differentiated, the better.  Really nasty cancer cells are undifferentiated - no longer look at all like the tissue from which they arose, all of the cell is dedicated to simply multiplying and growing as a cancer cell.

Abbycat2's picture
Abbycat2
Posts: 641
Joined: Feb 2014

My gyn onc told me that Tx for my stage 3a Uterine Papillary Serous carcinoma was 90% surgical removal, 9% chemo Tx and 1% radiation. Think carefully about getting radiation Tx. My cancer was located high in my uterus and my doctor told me that I was not likely to develop cancer following all my treatment on my vaginal cuff. SO, I chose no radiation. Boy, is radiation the “gift that keeps on giving“ in that the damage it causes is permanent and can ruin your quality of life. I have a close relative who had bilateral breast cancer, including her 2 neu- she had 3 bilateral breast surgeries, 6 rounds of chemo, including the alopecia-causing taxotere. Followed by 72 rounds of chest radiation- 36 per breast. No, she is not the same person she was before her “Tx”. She has NO stamina and gets winded with little effort. I doubt if she will have a long life. How can she when she is so diminished in capacity? Just keep in mind that some of this so called “treatment (Tx)” can and will destroy your quality of life.

zsazsa1
Posts: 290
Joined: Oct 2018

Well, I'm most definitely dreading it.  Here I am, feeling fantastic after having completed chemo.  And I know I'm choosing the most aggressive treatment by going with pelvic radiation.  But with serous/clear cell already out in a node, I don't think I have much choice in the matter.  I just don't think it makes sense to do brachytherapy when my tumor was in the other end of the uterus, and had escaped to a node, albeit only as isolated cells.  When I read the results of the GOG-249 and the PORTEC-3, they make a very convincing case for radiation increasing survival rates.  And the GOG-258 made a convincing case for chemotherapy.

One thing that I've learned is that different specialists have different views of each others' treatments.  The gyn onc surgeon told me that if I had pelvic radiation and chemo, that my colon would never work again.  But the radiation oncologists say that that is just NOT true - that the rate of serious complications is low.  The study results confirm that.  And then I hear anecdotes from women who suffered urinary tract, bowel, or bone damage.  I'm just terrified.  I try to think logically, look at the numbers.  But the anecdotes scare me.

LisaPizza's picture
LisaPizza
Posts: 207
Joined: Feb 2018

I thought external radiation had left me with permanent diarrhea, but it turned out it didn't, it was caused by something else unrelated and is being treated. I suspect radiation may have made my baseline looser or more frequent than before, but that's complicated by having had a cholecystectomy too. I feel reasonably good about my choice even if it's *only* local control, because i had extensive tumor all over my uterus and extensive tumor thoughout my left ovary, and only 5 lymph nodes removed. You have to remember that patient forums select for those who have had the most problems and complications, because rhey have the most to deal with. Ultimately you have to make peace with a devil's choice ... still working on that.

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

Careful with anecdotes. I had read so many horrible things online about Prolia that I almost refused the treatment despite my bones being almost ash. In fact, I was crying when the nurse gave me the shot. So far no problems and hopefully it will prevent me from having a hip fracture which often is the beginning of the end. 

Ribbons's picture
Ribbons
Posts: 71
Joined: Jan 2019

 

Yesterday I had the second brachytherapy treatment. Dr asked if I had any side effects, I said no and is it even working! She said yes, and no side effects is how it should be. So that’s good. 

Luckyluke
Posts: 55
Joined: Feb 2019

ZsaZsa1 saw the radiologist  today and I'm  getting the full treatment of radiation  external and brachyterapy. Even though I'm  just stage 2 serous he is recommending  both because serous is aggressive.  Well still have 1 round of chemo then will get 25 external and 3 brachy and then 3 more rounds of chemo. Hopefully  will be done with it all in late July. I'm  hoping it knocks anything out that still lingered.  Wishing you well in the rest of your  treatment. Chemo wasn't  too bad the 2nd round was better than 1st round. Hope it continues to go that way with each round. 

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