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Friday's CT-Scan 'official' results & pre-treatment mtg. today with radiation oncologist

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

I met with my radiation oncologist today for the first time since right after my surgery. You may remember that initially I thought we would be doing my radiation first after the surgery, but instead they wanted to do all of the chemo 1st, since at Stage 3, UPSC is just as likely or even more likely to recur at a distant location as it is to recur locally. I had my last chemo March 26th and learned today that it will be at least 2 or 3 weeks before I can start radiation, as my blood counts need to climb before I can start. (My platelets are at 55 and he wants them to be 100). Meanwhile I have to have one of THEIR CT-scans (the CT-scan I had on Friday doesn’t count for this; this one has to be done on the radiation table and is not diagnostic but rather a part of the simulation to customize the radiation to my ‘innards’.) That’s scheduled for this next Thursday morning.

The radiation oncologist (Dr.Yuman) said I was to NOT worry about this, but the CT-scan doctor noted a super-tiny 2.7 mm nodule on my left lung on Friday’s CT-scan. Dr. Yuman said this was just a ‘cover-your-as$’ CT-note, as there is no way that little dark mark looks any different than any of the other perfectly normal dark marks on my lung CT-scan, and is WAY too small to even qualify for a PET-scan to verify it. He seemed genuinely angry to see that note on my CT-scan and showed me the slides himself so I could see how exactly the same the ‘noted’ mark looked as all the other normal marks. He said this is the kind of thing that worries patients unnecessarily and is nothing he can even do anything about, test-wise. So I will do my best not to worry, as there is nothing I can do anyway. Luckily, I’m not a worrier by nature. But I wanted to be posting about 'dancing with NED'.

My radiation, once scheduled, will be 5 days a week for 25 to 28 rounds, followed by the 3 sessions of internal radiation. Dr. Yuman quieted a lot of my worries. Based on my internet research, I asked if I would be having the '4-beam’ radiation, less damaging than a single beam. He laughed and said they no longer use 4 beam radiation at Geisinger, and the newer technology is Intensity Modulated Radiation Therapy, which is over 20 beams and MUCH less damaging. I asked if they would be using a shield for my small bowel, but he said that this was also no longer done with his newer equipment as they are able to target the area so much better now that the bowel doesn’t need shielding. He also quieted my fear about bone loss, saying they try very hard to not radiate bones during this targeted treatment. They will be giving me a special low-fiber diet to follow during radiation to help with the possible diarrhea; and an ointment for the skin;…and of course, the vaginal dilator (ugh!) to help prevent vaginal adhesions and narrowing. He said, although the vaginal side effects are very common, the more serious side effects (bowel obstructions, bladder problems) happen only about 5% of the time. I need to do this, as it gives me my best chance for a cure.

Easter was a nice day, quiet. I cleaned the house in the morning and then made a ham and cheesy hash-browns for Easter dinner. My son, the grandkids, and Vic's daughter came for dinner. Dinner at 2 and everyone gone by 3:30. The grandkids slept over Friday night and we colored Easter eggs and played with the new bunny. Saturday morning we made cinnamon rolls and took them along with some of their Easter eggs and some chocolate candy in an Easter basket and went and visited their great-grandma (my ex-mother-in-law). I was happy to have had some quality time with the grandkids. Each day since chemo ended I feel a little stronger and more myself.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Linda, I take it that you are dancing with NED now or am I not reading your post right?
I had to wait 3 months for another ct scan for the spots they found in my lungs to see if they grew or not. I am in remission from all that so your doctor is right don't worry. I still have one showing "punctuated" and the Dr. isn't worried.
I had the same type of radiation that you are going to get, had the scan, did the simulation, got the tattoos and worked while having treatments.I did have bladder problems but a little pill took care of it. I also had a pill to take to slow down my bowels so the loose stools were not so bad. I had no skin problems either. I did not do the dilator, they never told me to use it and no problems yet. I was tired though, and rest is all you can do for that. I hope your blood counts come back fast. Glad you had a great Easter with your family.

Sharon

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

The thing is, a CT scan can't really show anything smaller than 1 centimeter, which is why my radiation oncologist was a bit angry that they would even flag something as small as 2.7 mm. He said that noting something like that on a CT-scan just worried a patient (so true!) and is something an oncologist has no way of confirming (too small to warrant a PET-scan; way too small to find surgically). It only 'appeared' on 1 slide, it is that small, and he showed me a bunch of slides where other normal marks looked just as big and just the same, and said that I should totally put this out of my mind, that he believes this is nothing and a 'CYA' (Cover Your As$) in case something shows up later and they can say they flagged it.

I believe him that this is nothing. But it does kind of ruin the long happy 3-month "dance with NED" I was hoping to enjoy until my next CT-scan in July. It will be harder to have them radiating my pelvis and vagina, wishing I were back in chemo attacking that probably-non-existant nodule in my lung. I may have to call my chemo oncologist to talk about this and then hopefully I can really not worry.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Take a deep breath. Believe it is nothing and relax your mind. You are in my prayers and I believe in my heart you are NED!

MIND, BODY AND SOUL!

Hugs.

deanna14
Posts: 733
Joined: Oct 2008

I am so sorry that this CT is testing your confidence in being cancer free. Sometimes, I so wonder if any of us will feel secure again. I am certainly learning to live each and every day...
Try to listen to what your doctor said. He is the one who deals with this day in and day out and I'm sure has seen so much. If he believes that you have nothing to worry about, then you have to believe it!
I am a worrier, by nature and I can imagine what you must be going through right now. Please try not to worry. Worry will only hinder your body's ability to fight and heal. I know it it difficult, but turn your worry over to the Lord.
I'm praying for you and I too believe that you are NED.
Stay strong and positive,
Deanna

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Linda, I was wondering if they had another scan to compare this last one with. I still say you are dancing with NED and the cancer head is just trying to burst your bubble. We are always going to feel like this I think. It's just that every little new pain is going to rear that monster again and we humans just can't help but worry. Go with what your doc says and don't stress it brings down your spirits. Easy for us to say right?

Lots of hugs for you,
Sharon

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

This is my 3rd CT-scan and so they had the first 2 to compare this one to. My daughter-in-law, a CT-technician, said all of my 3 CT-scans look exactly the same and I mustn't worry. Even so, I phoned my chemo oncologist today, just in case he wanted to postpone the radiation and try and get in a couple more rounds of chemo in light of this new scan. He said no, that he also disregards a 'finding' in the millimeter size and is comfortable with us sticking to our origibal plan of starting pelvic radiation next. I get my next CT-scan in July, and he is okay with that. So I have my 2 oncologists both 'pooh-poohing' the 'finding' as insignificant. I will try and think of it that way also, as long as July's CT-scan is NED! (We'll see how good I do with this "not worrying" in the dead of night!)

I had a bank board meeting this morning and the bank president, who lives in the same swanky housing development as many of these doctors (and is close friends with my radiation oncologist), offered to make a call and have someone else look at my scan again for another opinion. He said he's done that for others and seemed pretty confident that he could make that happen. That would be nice, if he has that kind of pull.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Linda,

I have a clock CD player next to my bed for the Dead of Night worry, aka "Cancer Brain". I have a native Indian CD that plays guitar and flute, soooooo relaxing! I am on automatic now, I just roll over and hit the play button when I'm either having a hot flash or cancer brain. Works great in helping me get back to sleep.

Sending you BIG, BIG cyber hugs.

MIND, BODY AND SOUL!

irishohiogirl's picture
irishohiogirl
Posts: 10
Joined: Oct 2007

Linda-just saw this post..I haven't been on in awhile. I too had clear CT scans and then a "small lung nodule" pop up on my last one. It was too small for my doctor to consider it pathologic but they followed up with another scan 3.5 months later just to be on top of it. In the last scan it was gone! Embrace NED, Love NED , Live with NED, none of us ever know how long he will dance with us us so we must enjoy his visit for as long as we can:)
Big Hugs Kelly

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

I'm so glad your time lung nodule turned out to be nothing. I hope and pray that mine will be the same and I will have NED once again in July. But your post really makes me very hopeful and is more comforting that I can express. THANKS!

& thanks to all of you for being there for me always in this scary and amazing journey!

bonniesue
Posts: 126
Joined: Apr 2009

Linda, It is amazing that you could find the info regarding these two different forms because I had my mom to two different Rad. oncs and one said maybe on her back and the other maybe on her stomach. One mentioned IGRT and doing four beam, the other IMRT. NO wonder the confusion as I wish it was more cut and dry. I have turned into a google nut and I really am no fan of computers..You are in my thoughts and prayers. bonniesue

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

Hi Bonnie
THe rad/oncologist that I have seen explained IMRT to me in that it is usually used in "tight" spaces such as tumours of the face where you are protecting a nerve that might be MM away
SHe said that depending on your body habitus (ie weight size) it was not always of value to do IMRT. She said that she would not know until my simulation ct whether it would be of any benefit in my situation.

I guess it all comes down to just how far away the bowel actually is when they set you up for radiation, and they really cannot tell that without the simulation ct

She also explained that lying on ones stomach usually causes the bowel to flop forward away from the radiation field, but that also would show up at the simulation.

janet

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

Thanks for this new information on IMRT, Janet, as that is what I will be having for my external pelvic radiation. I get the feeling IMRT is pretty standard at Geisinger (where I go.) My radiation oncologist made the '4-beam' I was asking about sound like it was a "10 years ago" technology, and I felt a little foolish to be so out of date in my research and in all of my side-effect worries I had listed to discuss. I had my simulation CT on Friday and there was no discussion as to any other possible radiation technique they might use. He did say that they would have no trouble being able to avoid my small bowel without a shield, and even reassured me that they would stay away from my bones to protect my bone marrow. I don't see how 'pin-pointed' they can be, when I have no evidence of disease in my pelvic region, and so I can't figure out what they are actually 'aiming' at. I assumed it would be a broad sweep. I guess I have more questions to ask when I go April 30th for my 1st radiation treatment.

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

I am almost done 6 to go of IMRT treatment. I had somw bladder problems at first but cleared rather fast. I have minor bowel problems mostly noisy and some soft stools. Only had loose stool twice. I lay on my stomache and this pushed bowel out of the way also have full bladder to push it up. Only thing that bothers me is the treatment takes 7 minutes but 3 or 4 times a week they take x-rays to make sure they are at the right area and not over shooting, this means another 5 minutes or so face down. Side effects of radiation are much easier to contorl tham with chemo. I know things will go well Linda and we will all gt thru this. Take care

bonniesue
Posts: 126
Joined: Apr 2009

That is great. Where are you going for rad tx. Did they check on your back and stomach and is it IMRT?IGRT or 4 beam??Do they have a CT built into the machine. Does it matter and how can you tell which place has the best technology to protect the small bowels?thanks, bonniesue

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

I go to Maplewood cancer center in Maplewood MN. It is IMRT treatment and I lay on my stomach I have a tatto (blue dots) on each hip and one on my left butt check plan on making them smiley faces after treatment is over. The radiation techs line me up by the hip dots and then the butt dot. No CT in the machine but they take x-rays mon weds and fri to make sure the beams are going to the right area. I had a CT done before treatment with vaginal marker started and then a CT with PET a few days later. I have 7 differant beam locations during each treatment and all 7 are shot twice. My Radation doctor beleives that laying on one stomach drops the bowels out of the way and full ballder pushes it up. I spoke to several professionals( am a nurse) about treatment and beleive i am being seen by th best in my area. I have has some loose bowel and cramping but nothing to bad. Best way to find a good place is to talk to your oncoligist. Lisa

bonniesue
Posts: 126
Joined: Apr 2009

nusey429..thanks for the informatiom. I appreciate the help. Glad you are tolerating the rad. Bonnie

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

All I've had is my simulation (actual radiation to start 4/30), but the CT-scan was built into the IMRT. I was on my back on a hard flat surface. (They said it was important that the surface had no 'give', for positioning.) There was a padded vinyl leg support that went under my bent knees and I had a little free-floating padded ring I was to hold onto with both hands on my chest, bent arms, elbows at my sides, (to help me hold still I think.) It really wasn't uncomfortable. I went into the CT-scan ring head first, different than my regular CT-scans. I had a 'vaginal marker' inserted that was just a small narrow rod to mark the top of my vaginal cuff. They made the 3 tiny tatoos with only a couple of small almost painless sticks in each hip and the very center of my pelvic bone, down pretty low, all in a straight line. When I asked about being on my stomach or back, the radiation oncologist said that with IMRT they automatically worked around the small bowel and bones, etc., and so a 'belly-board' (for stomach down radiation) wasn't necessary, and that I would be on my back; nor did he seem concerned that I have a full bladder or not, although I think I'll do that anyway as a precaution unless they tell me to go pee first.

bonniesue
Posts: 126
Joined: Apr 2009

Thanks, I asked a friend of mine who is a nurse to ask a rad. onc friend and he said that a lot of it has to do with how they were trained on back or stomach? Again, another reminder that medicine is not an exact science. Also-- that sometimes they mark with an X above the tattoos? Reinforced drinking 500cc of water 30 minutes prior to rad. treatment. Good luck with starting it up and you are in my thoughts and prayers. bonnie

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Linda, how funny is it about the things you hear about having a full bladder. I was told that a full bladder protects the bladder from getting irritated from the radiation. It causes less problems in the long run. I wonder who is right? I still had a irritated bladder until they gave me some great pills. lol

Hope all goes well with yours.

Sharon

deanna14
Posts: 733
Joined: Oct 2008

I finished radiation in December and still have an irritated bladder! I keep talking to the doctor about it and he does urinalysis and they always come back clean. My bladder has even been leaking. He tells me that it is decreased bladder capacity due to the radiation. Do you mind if I ask what the pills they put you on were and are you still taking them?

I made a point of having a full bladder with radiation. I live about 30 minutes from the cancer center and I would drink a tall glass of H20 on my drive there.

I hope everything goes fine for you Linda.

Hugs to all...
Deanna

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

I will try to find out the old prescription paper on them and get back to you. I do know that they made my urine bright orange, and if you are leaking, like I was I had to wear pads all the time. I will look tonight. I am not taking them now, because I don't need them.
I felt like I was peeing glass and I thought I had a bladder infection at first, those pills did great.

Smiles for you,
Sharon

cookie1948
Posts: 79
Joined: Feb 2009

I believe the pills that make you pee "Orange" are pyridium., or a generic for it.
Cookie :)
relieves pain and burning.

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