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debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

I read the posts and find that most of you have several CAT/Pet/ MRI'S. Except for right before surgery when I had an MRI, I have never had another scan of any kind. Is this normal? I have the CA125, Pap, internal check, but that's it. Even on my first year anniversary and the second year....just wondering? Best debrajo

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

Without a scan how does your doctor determine that you are NED? the pre-surgery scan would serve as a baseline and then future scans can be compared to this.

I have UPSC which is aggressive and highly recurrent - so maybe my surveillance protocol differs from other cancers. But I've always had scans at end of treatment and then, at the very least, annually after that. Scans found my two recurrences thankfully at early stages.

I just saw my doc today and we discussed my rising ca125 (I'm monitored monthly while I'm on a hormone treatment). He said that ca125 really doesn't tell us anything and that we need to do a scan soon.

My doc doesn't even do a pap because he said I don't have a cervix anymore and no reason to do it. He does an internal check which has always been normal. The scans are catching the progression of my disease.

FYI, You can also check the guidelines on NCCN.com for surveillance protocol for your type of cancer.

Mary Ann

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

I have the same as you, upsc, only it is 1a. I don't know exactly why they don't have scans except the dr.s at md anderson seem to not want excessive radiation. I have had a chest x-ray once a year to check out two nodes in my lungs that have been there for years and are still the same. One dr. said they were just "body junk"...left over tissue from conception. Other than feeling my neck and throat area they are going solely on ca125. I had two years May 8 '12 out of treatment with(I hope!) no reacurrence. Why the Pap test, I don't know, but I have had a ton of those done over the last three years. Best, debrajo

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

Hi Debra,
I'm also followed at MDA and have had scans prior to treatment, after treatment and to investigate symptoms. He has stated he doesn't do routine followup imaging aside from chest xray, because they end up chasing around things that turn out to be nothing, but he will do them if I request them. I was stage IIIc UPSC diagnosed in 09. Regards, Laura

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Maybe it was because I was only 1a and all other things were negative, but they did not take any lymph nodes so I guess I'm going on an "ignorant is bliss" thing. In all truth I don't think the cancer was first priority...they never expected me to live over the open heart surgery I had eight weeks before the hysterectomy. They had even said that the cancer was a "secondary issue" Best, debrajo

Kaleena's picture
Kaleena
Posts: 1020
Joined: Nov 2009

I just had my check-up on Monday. Everything seemed good. With regard to scans, my doctor just advised me that due to new guidelines they will not be doing routine scans anymore unless you have some type of symptoms because of the risk of increase of cancer. The same reason they changed the way they treat prostate cancer.

I asked what kind of symptoms should I be looking for? He said pain (pelvic, abdomin, chest), shortness of breath, constipation, diarreah, vomiting - and these are something out of the ordinary that lasts more than several days or increases.

Since 2005, I have had regular CT Scans approximately every 6 months or yearly. in 2009 I had PET/CTs, PET Scans, MRIs, x-rays - my last scan was in October and it was a CT Scan. As to radiation exposure, the regular PET scan (Not PET/CT) has the least amount of radiation compared to the CT scan.

So now (in my area anyway or with my health carrier) in order for insurance companys to approve scans, you need a reason for them to approve it.

However, I know some physicians do it differently and sometimes if you press, they will give you a scan if you request it. They generally will start with a CT scan - those are usually approved first for a lot of insurance companies.

I do not get a CA125 because it was never an indicator for me.

I hope this helps

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

But that's a scary thing since many of us, including me, never had any symptoms at all!!!

Besides original crisis with sudden acute pain, the only indicator I had was an enlarged lymph node on my neck - this caught first recurrence. I wonder how many lives will be saved - or lost - due to these new guidelines. And I wonder if it's really a money thing.

I think my doc is a logical and independent thinker, thank God.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

My doc as well doesn't load up with lots of scans. For first 2 years I'd have the CT scan and/or if needed MRI, but today rely on physical, PAP, CA-125 and if have any symptoms, then a scan. Note -- the CA-125 is a good marker for me, as not for everyone. Pre-cancer it was very high and thru treatments until today, post-treatments it consistently has come down and stayed in same low range 4-6.

CT is helpful, but its theoretical limits are masses about 1.5 cm size. And you can have a lot of disease in the abdomen without any one mass achieving that size.

Still today, the best follow up is just going to an experienced Gyn oncologist, and letting him carefully think the thing through each visit. That requires history, careful exam, "selective" CT, and chemical marker assays.

-----------------------------------------

Below is information on radiation from scans.....

Sievert: The unit sievert specifically measures absorbed radiation which is absorbed by a person.

Gray: The unit gray, measures absorbed radiation which is absorbed into any material.

In most countries the current maximum permissible dose to radiation workers is 20 mSv per year averaged over five years, with a maximum of 50 mSv in any one year. This is over and above background exposure, and excludes medical exposure. [1]

Dose Examples

Eating one banana: 0.0001 mSv
Dental radiography: 0.005 mSv
Average dose to people living within 16 km of Three Mile Island accident: 0.08 mSv; maximum dose: 1 mSv
Mammogram: 3 mSv
Chest CT scan: 6–18 mSv

3 mSv/yr Typical background radiation experienced by North Americans per year
20 mSv/yr Current limit (averaged) for nuclear industry employees and uranium miners.
50 mSv/yr Former routine limit for nuclear industry employees. It is also the dose rate which arises from natural background levels in several places in Iran, India and Europe.
100 mSv/yr Lowest level at which any increase in cancer is clearly evident. Above this, the probability of cancer occurrence (rather than the severity) increases with dose.
350 mSv/lifetime Criterion for relocating people after Chernobyl accident.
10,000 mSv single dose Fatal within a few weeks.

Nuclear Radiation and Health Effects, World Nuclear Assn. Jun 2010

pakb56
Posts: 141
Joined: Jan 2012

When I was diagnosed with the brain tumors, that was probably the question most frequently asked of me about lack of body scans. I have to trust and have faith in my doctors but if I think through it, that was probably going to be the next step after my radiation and chemo was finished.

Love to you all,
Pat

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

I think oncologists look at overall survival and quality of life. I may be wrong, but I don't think overall survival rates increase when metastases are "caught" before symptoms occur. So our doctors have this in mind when considering whether to use imaging as followup.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

Hello Ladies, I’ve been out of the loop for a while since my ‘freaked out’ experience, because I’ve been going through weekly chemo and daily radiation and it has been brutal. I’ve completed 3 weeks so far and have one full week to go. I am totally exhausted but I know I can get through this. I also had an unexpected surgery to put a stint into my right kidney because it mysteriously became blocked. I had no idea – it showed when the Radiologist/ONC was setting me up for radiation. A follow-up pelvic CT scan was ordered and it verified my kidney was blocked and there were no stones but is the appearance of an enlarged lymph node. It’s not for certain because it is at the site where stitches occurred during my hysterectomy. It could be scar tissue. The CT scan comment ‘suggests’ a PET scan for further evaluation.
First of all without the CT scans, NONE of my recurrences would have ever been detected. My pain in the arm, shoulder and neck was not diagnosed by an x-ray or an ultrasound. My PCP thought I had a pulled muscle so for several weeks I was on anti-inflammatory, muscle relaxers and pain meds. Only after I called my GYN/ONC just to advise and he ordered the CT scan, did the 4.0 x 3.5 mass in my Supraclavicular Lymph node show up. But in that same scan, nodules in both my lungs and many small spots were also found scattered throughout my lungs. I never had any breathing problems or colds, coughs, etc. Further as I proceeded through Taxol/Carbo chemo, a follow-up CT revealed the mass in my neck and the lung nodules had reduced significantly and all the little spots disappeared totally, but a new 2.2 cm x 2.0 cm was now on my T7 vertebrae. I had not had any pain there either. My thing is once USPC metastases; it just picks & chooses where to attach. I am rather proactive, than waiting until this God awful disease spreads and I feel symptoms.
Yesterday, I was discussing the possibility of the PET scan – Again, my ONC told me my insurance would not cover the PET because the original source of my cancer was my uterus. I fought this batter the first 2 years and ended up paying for my on PET. I don’t have the money this time so that’s out of the question. So many with USPC (or other uterine cancers for that fact), seem to get approved for PETs. What is your secret? I’ll ask again what Diagnostic Codes your ONCs use to get approvals. I had Aetna last year and our company changed to United Healthcare. Any suggestions or information to get an approval for at least one PET would be greatly appreciated.

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

I had Aetna and they would not authorize a PET until AFTER a CT scan showed possible mets. My doc then requested the PET and they authorized it from then on.

I switched to BC and expected denial of PET but my doctor's office got it approved.

I'm surprised your doc's office isn't on top of this. My doc has a designated person who just does this stuff. Keep on top of the situation and fight. I got lots of people involved when I first fought this - my insurance company, my employer's insurance advocate. If you don't have one, ask your insurance company for an advocate who will actually help you.

good luck. let me know if you have any other questions. You should have no trouble getting this done but some docs don't want to bother fighting insurance companies (my first doc was like that - my present one fights for what he wants me to have and wins!!)

Mary Ann

Kaleena's picture
Kaleena
Posts: 1020
Joined: Nov 2009

Bonnie:

I have fought with the insurance company also. It is very frustrating. I had a different insurance company and was able to get PET scans. New Insurance company denied it even though my doctor ordered it saying it had to be "medically necessary". I told them my doctor ordered it, but they didn't care. It couldn't be for maintenance checks, etc. Ugh!

The one reason I was able to get some of my scans is that although I was diagnosed as endometrial adenocarcinoma, I was being treated as ovarian. I got upset when I saw that on the charts but years later I now know why. They were able to say that because it was never determine the histology of my cancer since I had it both in my uterus and on my left ovary. Although it was all tested as endometrial.

For you, I think you have a chance to get a PET because most insurance companies want you to get a CT first and then if something shows will allow for a PET. Since your scan also said suggests you get a PET, I would definitely file an appeal to your insurance company. You can do this.

THe other thing that is now against scans is some of the new guidelines. I just met with my doctor on Monday and after getting some sort of scan every 6 months was told that due to new guidelines they will not be doing any more routine scans so I am not getting one now. However, if I had symptoms, then they would probably do one. But like most of us, we would like to stop it before we get the symptoms.

With the way insurance companies rule the scans and new guidelines, it almost makes you want to say you have symptoms just to get someone to take notice.

Wishing you the best on your quest for a PET.

Kathy

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Bonnie, with so much documented active metastatic disease, I cannot understand why it is so difficult to get the PET approved. I have regular interval PET/CTs to monitor disease progression and, occasionally, disease improvement for UPSC. A PET is utilized for this very purpose. I would definitely get more to demnding to find out what issue is. With radiologist recommending this as well, it not happening is of concern.

Glad to see you are getting results from your treatments! This is indeed a tricky disease, scary in its go-anywhere behavior.
Take care,
Annie

bots's picture
bots
Posts: 53
Joined: Sep 2009

Debrajo,
My gyn oncologist did research on ovarian cancer at MD Anderson before she came to California. I also had (I hope past tense) USPC stage 1a. She explained to me that unless there is a symptom, she would not be doing scans. She said that the research shows that even though treatment may be started sooner with scans, the life span is not any greater. I am 2-1/2 years from my last treatment. The symptoms she said to watch for are vaginal bleeding (recurrence is most common on the vaginal cuff), prolonged pelvic pain, and inordinate bloating and belching. She does have me get the CA 125 before my check-up. I had my 6-month check up yesterday and everything looks fine. I have some neuropathy but it is pretty much controlled by neurontin, so I truly feel blessed.

I hope this helps somewhat.

Bots

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

That is basically what my dr's said, plus that some cancer feeds on radiation and can even start cancer in great doses. I made 2 years out May 8,'12,and my dr's do a CA125 every time plus a Pap. Someone else on the board said, why have that if you don;t have a cervix, and I really don't know, but they do one every visit. I don't care what they do as long as I stay cancer-free! Know I shouldn't go there, but can't help wondering just what our life span is. All I get is the "every one is different" speech. I didn't really have any problems with nausea, neuropathy,or any thing. I lost the hair and gained 30 lbs I can't seem to lose and I do have extreme fatigue, but have to keep going(I'm taking care of my 86 year old mother). I just wish I had more energy, but have lost interest in almost everything I use to take pleasure in. Wonder if this is drug induced or just being overwhelmed. Any way, please keep in touch...seems like we are on the same path! Thanks for the info, best, debrajo

bots's picture
bots
Posts: 53
Joined: Sep 2009

Hi Debrajo,

I copied this information from the Hystersisters website:

"What takes the place of the cervix? I mean, if the surgeon removes my cervix, how is the vagina closed at the top?

"The vaginal cuff is created by the surgeon, at the top of the vagina, where the cervix used to be. Think of a tube sock, and how it is sewn at the toes, and you will have a pretty clear idea. Creation of the cuff does not usually result in a dramatic shortening of the vagina."

So, the pap smear can detect cancer that has recurred on the vaginal cuff. From what I understand, the cancer is removed with radiation treatments.

I would guess your fatigue is a combination of the drugs and being overwhelmed. I don't have nearly what you have on your plate, but it took at least two years before I felt like my old self (and of course, at 74, that is a pretty old self). My 97 year old mom lives a block away, but fortunately she is in a nursing home, so I don't have to worry about her daily care. She obviously gave me good genes as far as longevity is concerned.

After being diagnosed as prediabetic last year, I finally managed to lose 20 pounds, and my husband and I try to give our dog (see picture) a good walk every day. My glucose is normal again, so I am sure those things have helped, but again, I am very lucky to be able to do these things.

As my granddaughter says, "I will keep my fingers, toes, and eyes crossed for you."

Bots

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Thanks Laura and Bots! I am having thyroid problems and am pill-control diabetic, and am over weight. Link that with being 60 and I guess I;ll never feel energetic again. Visited a Hospics,my first, for my step-father. Talk about a bummer! Those places creep me out! Love your pictures! I have five cats now and have acquired a chocolate Lab with endless energy! Would love to do the long walks again, but three hundred feet is about all for me now, besides, I can't leave Mama alone and no one else lives nearby. Glad you two explained the PAP test to me. Makes sense. Keep in touch...I want to make 74 also! best, debrajo

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

They do a vaginal pap because there's still a slight possibility the cancer can come back to the vaginal area. A pap also picks up other disorders of the vagina. I figure they're up there, they might as well be thorough. Same with the CA 125. Laura

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