Do you get scans with your quarterly checks?

Catherine · 11-29-2010, 09:01 PM

Hi,

It has been 4.5 years since DX and I have never had a pet scan or cat scan. I see my oncologist every 4 months for blood work, a thourough exam with lots of questions about how I feel. Blood work including tumor markers is always perfect. He says he would order a scan for me if I tell him something is different. He is cautious about "false positives" on scans. Since the original scans, etc at DX in 2006, I have had no further scans. Now I have a hip that bothers me. Shall I ask for a scan? Or is this age (62years). I walk 5 times a week and sit alot at a computer. My hip hurts when I get up from the computer. Does not hurt when I walk. Hurts a little when I lay down at night. I tried to search the site for "bone mets." Not much luck on the site. Any ideas or advice? In general I feel well, just still trying to adjust to low stamina and new era of 10 hours of sleep required to make me feel rested and competent. I have my regular check up Dec 1.

Thanks, Catherine

DianneS · 11-29-2010, 09:17 PM

Catherine,

I just get bloodwork every 6 months. I have not had a scan yet, except for an ultrasound and mammo at time of dx. I guess I could have one if I asked too....but isn't there risk of problems from too many scans? Don't they use radio-isotopes/tracers? I had plenty of CT scans and MRI's in 05 and 06 for the brain aneurysm. My doc tells me that they are now finding that these can cause medical problems so they don't like to order them much. I understand what you're saying about aches and pains. Sometimes I get aches that make me wonder & send me into a panic. But - my doc said that if it's cancer it won't go away but tends to get worse. I don't know if that is true or not.

I, too, need more sleep and feel tired easily but I only finished Herceptin in 2009.

I also know that sitting at the computer (so easy to waste hours here!) can cause hip and back pain. Do you exercise much? If so, does the pain improve on exercising or get worse?

Dianne

Catherine · 11-29-2010, 09:23 PM

Hi Dianne,

Thanks for your input. Pain gets better with excercise. But weird that it hurts when I lay down at night. Yeah, I wondered about the safety of unneeded scans. I had quite a few scans before they decided a course of treatment for me.

Catherine

DianneS · 11-29-2010, 10:15 PM

Catherine,

I see you are also a double mastectomy person like me. I have not decided whether I will do implants or not. I have prosthetics which are a pain. I am not comfortable going outside w/o them.
What did you decide to do, if I may ask?
Dianne

ElaineM · 11-29-2010, 11:18 PM

I would ask for an xray to see what is going on with the hip. It could be another problem unrelated to cancer like arthritis or osteoarthritis. If the xray is not able to diagnose the problem some kind of scan might be the way to check. Good luck.

BonnieR · 11-29-2010, 11:41 PM

I have not had scans as part of my routine follow up.
But had them when issues arose that needed further exploration. The most recent being the unfortunate misdiagnosis of lung cancer and unnecessary surgery!
They are a double edged sword as they can lead to false positives and unnecessary angst.
But your hip pain bears looking into. As Elaine said, we are still subject to "normal" medical problems too! Like arthritis, sciaticia, etc. Everything isn't cancer. But we always fear it is!
Keep the faith.

pibikay · 11-30-2010, 03:58 AM

I took Hema for her monthly check up today. After her diagnosis in March she had a PET scan on 31st July.I asked the Onc whether any scan is now needed.He said that as Hema is reporting that her back pain is less no scan is necessary. But he has ordered a X-Ray and Ultra sound in the last week of December before the next appointment on 6th Jan

Catherine · 11-30-2010, 08:19 AM

Elaine, Bonnie and PBK,

Thank you for your comments about scans and xrays. I appreciate your wisdom. I would never have thought about the simple xray. I will definitely ask about an xray and I will quit worrying that it might be the return of you know what. Once again, I am so grateful for this board. Thank you to all my friends and cyber family here.

Hugs, Catherine

Bonnie: Keep the Faith...I still remember that from the 60's....puts a smile on my face

Catherine · 11-30-2010, 08:28 AM

Dianne,

About my double mast. After 4 plus years, I realize more and more how reconstruction is a very individual decision. I always wear my prosthesis when I go out and I think I look good in my clothes. I have friends that have forgotten that what is under my sweater is "fake." I am happy with my decision not to have reconstruction. Send me a private message or email and I will share more of my decision making process. A couple of reasons why I chose not to: possibly poor results due to so much radiation, no feeling, I was tired of treatment and wanted my normal life back. I know friends that have had reconstruction and they are very happy. So, I totally get why this is such an individual choice. How old are you?

I would love to hear from you, Catherine

Mary L · 11-30-2010, 09:06 AM

Good Morning Catherine. As an IBC survivor I was getting a PET Scan every year and routine blood work 3 x year. Now that I am a 7 year survivor and 3 years cancer free, they only do cat scans 1 x year and blood work 3 x year. I still see on onc every 4 months and he is very through. As far as reconstruction goes, my plastic surgeon did not recommend it for me as I had so little skin left on my mastectomy site. I am so thankful that I did not push for it as that is the exact site that my IBC skin mets came back 4 times. It probably would have not been detected as early as it was each time. I am perfectly happy with my lightweight prothesis. No one ever knows it's not real and if they do, "who cares". You have to decide what is right for you. Best wishes, Mary L

Debbie L. · 11-30-2010, 09:28 AM

Hi Catherine,

Everyone wonders about follow-up, and everyone does it differently. Just keep in mind that scans do not prevent recurrence, nor even give any kind of longterm assurance that there is no recurrence. You don't have to stop worrying about recurrence, you just have to accept that the worry will be there. It's normal for the worry to be there, not much we can do about that except just keep on.

As for your hips, I'm younger than you by a bit and my hips always hurt the worst at night after I lay down. Sometimes they'll be fine at first and wake me up in the wee hours for a trip to the kitchen for motrin, or just getting up and walking around for a few minutes will relieve the pain. So that part of your symptoms seems normal, to me. Yoga helps keep my hips behaving somewhat, but they are always cranky, and they take turns - sometimes one worse, then the other.

Before asking your provider for scans, figure out what it is you want. Do you simply want reassurance that the hip pain is not cancer? Then probably a bone scan (not a dexa for density but a bone scan) will be most accurate. If you want something done about the pain itself, because it's so bad -- that's another issue and maybe after the bone scan, an x-ray (and an orthopedist) would be the place to start.

Debbie Laxague

LoisLane · 11-30-2010, 11:29 AM

Hi Catherine. Just saw my oncologist in November. He does not order blood work or any scans. If you have a specific problem he or my breast surgeon, I see one of them every six months, would order a scan. I actually had a very sore shoulder for a while and my family doctor ordered an x-ray which was negative. It kept up so when I saw my breast surgeon she said we would order a bone scan just to be sure. Before my appt for the bone scan came up my family doctor decided to order a US of shoulder and it turned out to be a calcium buildup. We then cancelled the bone scan. Unless you actually have a persistent problem or complaint routine scans are not done. I also had a double mastectomy and have not bothered with reconstruction. Sometimes I think about it but I feel I have had enough surgeries to last a lifetime. Also my breast surgeon said if I did consider reconstruction it would have to be tram flap because having radiation on my left side they would not be able to do implants. I am happy how things are now. I usually just put on a padded bra and that's it. I really dont even bother with the prothesis. Take care Lois

PatriceH · 12-04-2010, 02:59 PM

Interesting that treatment paths seem all over the place. My recent visit, doc did a labs but when the visit came he didn't discuss them. When I asked, he said they really aren't reliable. In my inside anger I wondered, why then did I even have the thing! He is also saying they just ask how a patient feels and work off that.

I've had hip pain also, but I think it's related to the strenuous exercise I do. I just take tylenol every night before I go to bed. I feel that if it were something worse, tylenol would not address the issue.

Now, struggling with doctor not calling me back after having left two messages for a referral to rehab for a new compression sleeve. Trying not to burn bridges, but really wondering why no response.

tricia keegan · 12-04-2010, 05:10 PM

Catherine, I don't get scans as part of my usual check up but if I have a problem or pain the onc orders one.

I had severe back pain last year and went through two months of scans and waiting and thankfully it was all clear, but the stress they caused was immense. I'd only ask for one if I really was concerned and felt something was wrong

Catherine · 12-05-2010, 10:15 PM

Thank you all for your advice about scans. My "uncomfortable hip pain" is really not all that painful. My ONC said that if the cancer had come back in my hips or bones...the pain would be very severe and not go away. My pain lessens with walking. It increases when I sit at the computer too long. Onc appointment was Dec 1, blood work and tumor markers came back PERFECT.

I go again in 4 months. I love my ONC. He takes at least 30-40 minutes with me to answer all my questions and does a very thorough exam. I see where someone suggested having an onc that specializes in BC. My onc seems to see lots of BC patients but has other cancer patients too. I think I will ask him next time about his speciality.

DiDi70 · 12-06-2010, 06:46 AM

I am still on Herceptin and am 13 months post diagnosis with Stage 3b. My Oncologist does not order scans due to the false positive issue and also, no cancer markers are ordered in lab work. All of my follow up will be self-reporting at physical exams. That's it.

I too have pain if I sit for a while, which subsides when moving around for a few minutes. I find that all of my joints are stiff, and this seems to be quite common in women who are on Herceptin and post-Herceptin. Also, I've been told that the stiffness can be caused by menopause. Oh my......so many possibilities.

Glad to hear that Tylenol is working for you and I am thrilled to hear that your markers came back perfect! That is truly great news!

Keep moving!

Didi

PatriceH · 12-06-2010, 07:06 PM

I've have the soreness in the hips also...and lock up when being immobile (sitting, sleeping) until those first few steps. It IS hard to know if its herceptin, recurrence or age.

harrie · 12-08-2010, 11:41 PM

Catherine, I don't have scans and I have a ck up every 6 months. I do have the blood workup done. Unless there is reason to have it done, I think it might be wise to avoid the radiation.

tfabre · 12-09-2010, 09:23 PM

I am so glad this question came up, because it is the question I was going to ask tonight! I finished chemo, and have my consult visit with the surgeons for bilateral mastectomy/reconstruction coming up, and have not had any scans since May. I recently had an MRI for...you guessed it...hip and low back pain. Mine is worse after sitting or lying down, also! I am still on Herceptin, and will be 48 next month...still a spring chicken! LOL! Reading all of your posts has put my mind at ease....Thanks!

Westcoastgirl · 12-10-2010, 12:43 PM

I have hip pain on one side and went to the physio therapist who diagnosed bursitis. I also tried an acupuncturist. I found their treatments did very little good and that stretching the hip methodically and doing yoga help the most. At night I sleep with a pillow between my legs until I get fed up with it being there but find it eases the pain in bed.

As far as reconstruction I am one month out from implants. I waited two years after diagnosis. The unaffected side is lovely but there was a lot more skin left. The side with breast cancer had less skin and is tight compared to the other side but the ps says we need to wait three months to see the "final" results. Already I see an improvement. I also had radiation so expect the one breast to be a little higher and a little firmer as that is what I have read, but am ever hopeful. So far so good but the jury remains out on this operation as to whether it was worth it. I do have to say looking down and seeing flesh is a delightful feeling. It was more painful than I had expected however but the worst is over. Because I had enough skin left the ps went directly to implants, skipping the expanders, and I am not sure that was the wisest decision for the bc side. All the best, Carolyn