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  #1  
Unread 01-26-2004, 01:11 PM
No Radiation

Hello Ladies:

Just thought I'd let you know what the latest results were to the question of whether or not radiation was needed.

An additional test was done on the pathology slides regarding "Vascular Space Involvement" - that was the name of the test and the result was that there was "no vascular space involvement" and this was a good thing.

The cancer was endometrioid type involving the inner-half of myometrium and extending down to endocervical mucosa (as it was put in the path report). The radiologist/onc thinks that they got it all and no further treatment is required i.e., no radiation at this time. It was stage 1 - grade 2A

Nothing is going to be done about the lymph nodes (they were not tested during surgery). I was told to keep a close watch on things for the next two years for recurrence although the rad/onc thought that there would be less than 5% recurrence although as he said - sometimes they (the doctors) could be wrong (no one can give us 100% although I would have liked that assurance).

I am still going to go to a gyn/onc but am waiting for an appointment.

Wishing you all a good day!!
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  #2  
Unread 01-26-2004, 05:40 PM
No Radiation

Soranna,

So glad that no radiation is needed! Hopefully it will stay that way!

Keeping you in thought and prayer.

Blessings.
Marlene
  #3  
Unread 01-26-2004, 08:04 PM
No Radiation

So happy to hear the good news! Congratulations!
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  #4  
Unread 01-27-2004, 03:37 AM
Thats great news!

You must be delighted you dont have to have radiation.Although i do have to say if it was me i would be concerned about the rad/onc saying 'they think they got it all'.... When you go and see your gyn/onc maybe it might be a good idea to ask for a PET/CAT scan then you can be even more confident that the nasties have all gone? Just a thought. Let us know what he/she says.

take care


Sheila
  #5  
Unread 01-27-2004, 07:57 AM
No Radiation

Dear Soranna, Glad to learn radiation is not needed. I would like to second Sheila's suggestion re asking for CAT/PET test. These can be repeated annually for a couple years to provide further evidence/reassurance nothing is brewing. From experience when I had to deal with another med condition which was life threatening, I have learned to become my best medical advocate so pls don't be shy to request more be done to assure you are getting the best treatment. FYI, Low grade/stage endo cancer was found during my op and I will be having a CT scan follow-up about one yr post op. I actually had suggested and my docs agreed it was good idea to have one pre my TAH/BSO. Rather be over cautious than sorry.
s and blessings peggiesue
  #6  
Unread 02-06-2004, 01:24 AM
No radiation

Soranna, PeggieSue and Sheila,

I am trying to decide whether or not to have internal radiation. My body won't take the external so if it comes to the lymph nodes that is just my bad luck, not much can be done.

My rad/onc told me my chances of a recurring cancer are low, possibly 10% without radiation, and he would not subject me to the external but thinks I should have the internal radiation, which would save a recurrence in the vagina. Even with that the chances are still 2% for recurrence so I am really wondering if 8% is worth radiation!!!

I asked about CAT scans and other tests but he told me any cancer cells would be so microscopic they simply would not show up on any test given.

What is CAT/PET test? The only cat pet I know about is my ginger cat called Bobby! (sorry, couldn't help that!) I just don't know what the PET would stand for.
  #7  
Unread 02-06-2004, 04:02 AM
Hiya

Aussielady.......PET means Positron Emission Tomography. Used with a CAT Scan it will show any 'hot' spots going on in your body. In particular, in my case, it was used to see if i had any enlarged lymph nodes. It involves the use of a small amount of radioativity so it is advisable not to be around children for 24 hours....thats what i was told. Maybe in Australia the PET Scan is not widely available. The one i used had only been in the UK 6 weeks and i was the third person on it! There is one other in London and i should imagine there must be another one somewhere in the UK! All i can tell you, that from my point of view, it has saved me from having another operation and for that im delighted. I have also been told that should my CA125 change
drastically i will have another one. Mind you it cost £1,600 but my insurance paid for it. It isnt available on the National Health here which doesnt seem right but there you go.

Hope this helps....

Sheila
  #8  
Unread 02-06-2004, 08:43 AM
No Radiation

Hi Aussielady, I know it can be a difficult decision especially as you are fighting other things too. fyi, my cancer (endo stage 1b)also was invasive and had moved into the myometrium, but it was quite far from reaching even the half way point. The latter was one of the major factors which led to my gyn/onc's call that radiation or chemo were not needed; had it gone half-way or more they both said they would have recommended radiation and possibly chemo too. In may case in my case the odds of any return with or without radiation remained the same- I recall 2/3 percent. If the odds would have improved, which you say would occur in your case, I personally would have leaned myself to having the radiation.
BTW, are you talking with a gyn/onc? If not please consider getting an opinion from at least one as they are the experts. Perhaps a second or even third opinion would help you decide more easily.
Have the docs advised re your follow-up whether or not you have radiation? Usually you can expect to have internal exams including paps every 3 or 6 months and of course the CAT probably PET scans too. My docs also advised to have annual exams- the works- religiously. They also said to report anything unusual healthwise since if endo cancer metestasizes it usually spreads (if I recall correctly) to the lungs, head and/or bone. I guess with cancer unfortunately they can never really make a call of 100 percent cure and we need to accept that we really are in remission, follow our docs' advise, and watch for possible reaccurence.
I will put you in my prayers. s and blessings, Peggiesue
PS, that was cute :re cat/pet and you ginger Bobby. My "furry kids" - including 6 felines, one of whom thinks he is a dog and hangs out with my 2 canines - bring so much love and happiness; they are a constant reminder of God's love (he certainly filled those little critters with lots of it) as well as His great sense of humor.
  #9  
Unread 02-07-2004, 01:04 AM
No Radiation

Sheila and Peggysue,

Thanks for the info. I don't know if we have PET scans here. If they are not on British health then probably not on Australian either. CAT scans are.

I was told I would never have to have a pap smear again but last Monday a new Dr (mine moved to Sydney NSW) did one and I was most upset about the whole thing because he did not explain why very well, hardly spoke English clearly. The hospital lost my file months ago so he had no file to even know what had been done to me, he only knew I was there for my 6 weeks checkup (at 8 weeks!) so as far as he knew I still had a cervix. Anyway he did it and told me he'd let me know if anything showed up, if not he would not call.

As far as follow up is concerned I was told 6 weeks then 3-6 months then every 12 months. All this was told in the hospital. I did know and understand about the cancer spreading, which is why I have been very dilligent in having all cancer concerns checked and am cleared of bladder, bowel, bone, kidney, liver, and lung cancer. They don't think I will get a secondary cancer other than a very slim chance 10% vaginal or lymph nodes and they don't think the nodes will come into it.

Regarding the cancer itself, it had barely reached half way so they believed radiation was not necessary and chemo was not needed at all, but I would refuse chemo no matter what. They said it had not reached the cervix but changed their minds.

Yes I had a gyn/onc and trusted her, but also had another opinion prior to the hysterectomy. She took another opinion and went along with the 2 she got and told me just to be safe I should have the radiotherapy. I'm still not convinced, but someone is sending me doctors information on how they decide on the stages. That may convince me one way or the other. Jumping from 1a to 2b really seems a big jump to me. I tried to see the slides but they won't let me. So much for freedom of information and a right to your own file - convenient they have lost it!

They insist no test at all will show microscopic cancer cells. Nothing will show until a recurrence.

So much conflicting information, but I'd rather believe those who have been there because these doctors onlyknow their bookwork and seem reluctant to tell the WHOLE truth unless pressed.
  #10  
Unread 02-07-2004, 07:30 AM
No Radiation

Aussielady, I am concerned, if I am reading you correctly, that they lost your file and/or slides? If you have any doubts re the pathologist and or the staging (which you said changed), you could send those slides to another pathologist for a second opinion and you would want your file if you decided to consult with another doctor. Also do not like to hear you have to "press" the docs to get the whole truth. Perhaps you want to consider looking for another gyn/onc that will be entirely "open" with you when you ask questions, one you would have confidence in.
BTW, the paps are done to determine if any cancer may be growing there. had my first post op one done at my 3 month visit. Please be demonstrative about obtaining any information you want, it is your health they are dealing with. s peggiesue
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