Can I ask for scans for piece of mind?

AprilAnn2533

I was diagnosed with breast cancer in January - high grade, HER2+, fairly large mass. I have finished my 6 rounds of TCHP chemo. By the third round, an US revealed the mass had shrunk considerably, and by the 4th, my doctor couldn't feel it any longer. I had a lymph node biopsy about three weeks ago - everything was completely clear. My labs have shown nothing of concern at any point. I was able to navigate the chemo pretty well - mostly just dealing with the hair loss, some mild fatigue at times, loss of taste (which is a bummer), and some body aches and pains. My double mastectomy and DEIP flap reconstruction is next week and my doctor has told me she is optimistic for pathology to reveal a good response. The plan is to continue on with H+P infusions through February for a full year of treatment.

I want to be comforted that this all sounds pretty good (all things considered), but I am struggling with the fact I have never had anything like a PET or CT scan. I feel so much like I want this last piece of the puzzle before I can really feel reassured that everything has really worked and that I can move forward feeling like I really will be OK. I have asked my nurse navigator why I haven't had any of these other tests and she said they haven't been indicated. She is a BC survivor herself and said she totally understands my feelings of wanting the confirmation a scan brings, and that maybe it is something that can be discussed in the future, but to get past the surgery first. Has anyone else run into this? Is it normal not to have some of these baseline scans - do I need to figure my doctor with two decades of experience would know if I needed a scan and is just trying to save me one more stressful experience. How do I let myself move forward if I don't get a scan or don't yet get approved for one for months? I think part of the issue is that I no longer know how to "read" my body - so (in a tale old as time) every time I feel achy or something, it is really scary because I don't know if it is a lingering side effect of the chemo/HP infusions or the cancer winking at me. I am having a hard time trusting myself to determine what is a problem and what isn't. Thus the deep desire for a scan to do it for me . . .

exbrnxgrl

AprilAnn,

Your diagnosis line is not public but I am assuming you are lower stage. Scans are not routine nor recommended for lower stages and are not standard of care. Only a very small number of bc patients, about 6%, are metastatic at initial diagnosis. Scans are also incredibly expensive, a PET is about $5,000., and expose the patient to a lot of radiation. Additionally most insurance companies will not cover the cost for something that is not standard of care. That being said, I have occasionally heard of early stagers having some type of scanning. I do not know if they paid for it themselves or if their doctor was able to push insurance to pay. Good luck to you and I hope you find a way to allay your anxiety. Take care.

SpecialK

I was diagnosed with a nearly 3cm Her2+ mass and did have a PET/CT scan prior to surgery - my chemo and Herceptin was adjuvent, and Perjeta was not yet being used. I had another one done when I finished Herceptin, and another at the five year point - all covered by insurance, with just my normal co-pay. These were all ordered by my oncologist and done in the imaging department of the facility he is part of. The initial scan was done as part of my diagnostic workup specifically because I was Her2+, the one at the conclusion of Herceptin was done because surgery revealed I was node positive, the third at the five year point was done because of my result on the BCI test indicating low benefit from anti-hormonals and high risk of recurrence. As posted above scans are not the norm or standard of treatment for all early stage patients, but really should be individualized and determined for each of us rather than categorized as a group, in my opinion. As far as having a PET now I am not sure that it would reveal anything this close to having had systemic treatment. Imaging has thresholds - meaning things have to be of a certain size to be seen, so if your breast tumor has responded well to neoadjuvent chemo and targeted therapy, it would be somewhat logical to assume that tumors elsewhere would too and could be too small to see. Maybe ask your oncologist if he/she would order a PET or PET/CT after you have finished with all of your targeted therapies and some time has passed - like the two to three year point, maybe? That is usually the time period a Her2+ driven recurrence would happen, so that might be a more reasonable request.

ElaineTherese

Hi!

My cancer was also HER2+, and I have had three PET scans. My first PET scan was after diagnosis, to see if my cancer had spread beyond the breast and one compromised lymph node. I'm pretty sure my oncologist ordered the scan because my lump was big (5 cm.+ a lovely satellite) and one node had tested positive through a fine needle biopsy.

I had my second PET scan after I finished chemo and before surgery. This PET scan showed that all my active cancer was gone in my breast and compromised lymph node. That, plus a similar finding on an MRI, gave me the confidence to get a lumpectomy rather than a mastectomy. My surgical pathology report later confirmed that there was no active cancer left.

So, why did I get a third PET scan? Well, "something" had lit up in my first two PET scans, near my left femoral neck (hip area). The third PET scan also showed this "something." This led to another MRI, and the discovery that the "something" was really a "nothing."

The moral of this story is that, yes, PET scans can be comforting, but they can also produce false positives that lead to further worry and further screening. Lots of things light up on PETs that are NOT cancer.

I'm with Special K. See if you can get a scan a few years down the line. But, make sure your insurance will pay for it. ((Hugs))

SJH15

Hi AprilAnn,

I too am HER2+, diagnosed with December with a 4.6cm mass. My surgical oncologist ordered bone, chest and pelvis scans prior to starting treatment. I was told it was so that we have a baseline down the road to compare future scans too. I live in Canada and the scans were covered by our health care system, I did not have to deal with insurance companies and try to obtain approvals.

I think it's fair for you to request scans from your doctor. I'm sure everything is fine but if it will help you sleep better at night than it is worth it. I do agree with your nurse you should get past the surgery first. I also had a double mastectomy and immediate DIEP (7 weeks ago) and it's a big surgery. I would take at least two weeks after to focus on recovery and healing, then do the scans.

Sending you hugs and all the best with your surgery. As I mentioned, I'm 7 weeks out and have no regrets with doing the mastecomy/immediate DIEP and it feels so good knowing the cancer is gone!

DutchieGirl

I’m also in Canada so things are different for us. When I was diagnosed, I was sent for all the scans to see if the cancer had spread. When I was going through treatment, I lost my vision in both eyes. A brain scan was ordered. I also had a problem with a sore hip so a bone scan was ordered. All results were good. I asked my oncologist if I would get the gamut of scans when I was done. He said that no, they don’t do scans unless it’s warranted. I actually am glad of this for a variety of reasons, but mainly because I suffer from scanxiety. The time leading up to the scans and the waiting time before the results generally have me stocking up on Ativan. If I have a pain that lasts for more than two weeks, I know I can call and a scan will be scheduled. I’m good with that