Pet Scan

KathyT · 02-08-2015, 04:08 PM

I need some advice....
I got an order(upon my request) for a pet scan being I just finished Herceptin treatment Feb. 4th. I know it is in your system about 3 weeks. When should I get the pet scan done? Has anyone else had a pet scan at the end of treatment? I am thinking of waiting about 5-6 weeks bc the Herceptin should be out of my system and if anything is brewing it would hopefully show up by then....what do you think?

thinkpositive · 02-09-2015, 09:56 AM

I had a PET/CT scan prior to any treatment and then following my chemo. The PET/and CT scan after chemo showed no cancer. I had a double mastectomy shortly after chemo and it also showed no cancer. My onc has no plans to perform an additional PET/CT scan unless I show some symptoms of recurrence.

I finished Herceptin in August and currently am getting no treatments. I see my onc and other doc's on a regular basis and get blood tests but that's it. It is a bit scary not to have regular test to confirm that I'm still cancer free but I also understand that there are risks and costs associated with them.

For me, I am comfortable with my treatment plan and follow up care. However, if you aren't, then I'm thinking its best to talk to your onc about the risks of the test and make your decision with that in mind. It certainly isn't good for your health to be under stress all the time.

Best of luck to you

KathyT · 02-09-2015, 02:16 PM

Think positive,
Did you wait any time before having your pet scan after chemo?

thinkpositive · 02-09-2015, 05:45 PM

Kathy,

No. I had the PET/CT scan done the week I finished chemo. Did you happen to have a complete pathological response to the chemo (ie. patholigy report at mastectomy found no cancer)?

KathyT · 02-09-2015, 06:26 PM

No, I didnt

They found a .4cm area found at the time of my mastectomy.
I am ER/PR positive too so on Tamoxifen now.

Kathy

thinkpositive · 02-10-2015, 06:21 PM

I'm not sure why your health care team didn't do a PET/CT scan after your chemo. I was stage 3C at diagnosis with cancer in my supraclavicle nodes. The PET/CT scan after the chemo showed no cancer in the nodes or anywhere else. Perhaps this was done to determine if surgery also needed to be done to remove these nodes? I'm not sure. I see that your cancer was found at stage 2. Perhaps that is the difference.

I'd want to get the PET/CT scan but that's just me.

Take care

KathyT · 02-10-2015, 07:05 PM

I do want to get it and will for sure just not sure if I should wait a few weeks until the Herceptin is out of my system....I am thinking that would be the smartest thing to do. My doctor doesn't really believe in doing tests/scans. He was pretty sure the Cancer was gone due to physical assessment, we couldn't feel the lump after first treatment of chemo. I kick my self for not requesting an MRI or Pet or even an ultrasound after treatment was over. I would have had surgery sooner, I waited 6 weeks to have my mastectomy because July 4th was right then and I wanted to wait until after the holiday. If I would have known there was anything there I would have had surgery right away!! Thanks for replying to my thread

thinkpositive · 02-11-2015, 10:04 AM

Kathy,

No need to be tough on yourself. It looks like you did have surgery right after chemo. My understanding is that typically you'll need to wait 4 - 6 weeks after chemo to have surgery. I waited 5 weeks. It looks like you waited 6 weeks. I don't think a week makes any difference at all.

Keep me posted on what you decide to do. Congrats on completing your Herceptin treatments! Another milestone reached!

Take Care,

Brenda

RedHen · 02-18-2015, 10:26 AM

I moved from S. Louisiana where I had surgery, started chemo (TCH) and completed radiation to E. Tennessee. I have all new doctors of course. Neither the onc nor the surgeon who is following me recommends another PET. I had one after surgery, but I don't know that I'd have had another one if I had stayed where I was. We never discussed it.

From these posts, I'm wondering if I'm getting the best treatment or if my age (75) makes me ineligible. I know there are new rules in place governing who receives what treatment and at what stage or age, but no one has told me why I shouldn't get a PET scan.

The surgeon I see has ordered two needle biopsies of a node on my L. thyroid. Neither yielded anything useful, but I've had to start taking something for underactive thyroid. He also wanted a needle biopsy of the right thyroid, but the radiologist refused to do it w/o a CT. He said the location presented a risk.

I'm thoroughly confused!

My best to all of you.

Lynne

jaykay · 02-18-2015, 02:21 PM

I've never had a pet scan - just breast MRI's. Every oncologist is different (I sound like a broken record) and I believe there should be a uniform set of post cancer treatment tests.

Debbie L. · 02-18-2015, 04:56 PM

Kathy, sorry to be late seeing your post. I don't think whether Herceptin is in your system or not has anything to do with timing your PET scan. The timing of recurrences (if they happen) is pretty random.

But if I'm reading your signature right, you just (in January) had lat flap reconstruction? I think (others, please correct me if I'm wrong) that PETs will light up when there's inflamed/healing tissues -- they don't just pick up cancer. I fear that having a PET before you're fully healed from the reconstruction will only cause you worry, because "something" might well show up (probably from the healing process), and then you won't get the reassurance you're seeking. Maybe you could call the imaging center and ask to speak to the radiologist who does the PETs, and ask him/her this question, before proceeding.

Good luck, and keep us posted.

Debbie Laxague

Henny · 02-18-2015, 07:51 PM

Kathy,

Herceptin won't affect your PET scan. The only factors to be concerned about are that you make sure you fasted for at least 6 hours, don't exercise for 24 hours, and stay warm (just don't get chilled)

My diagnosis is very similar to yours. I had PET scans at the beginning and then when I finished treatment. I worked in a PET/CT department and was very paranoid about recurrence since I saw it every day. I took a different job and over the last few years have been able to see cancer in the rearview mirror as my fears receded and my life came back into focus. Be patient with yourself- it takes a while for all the symptoms to subside after all you had done. And treat yourself well

All the best,

Henny

SoCalGal · 02-20-2015, 02:33 AM

After dealing with this crap for 18 years, my best advise is to wait on the PETscan. (Herceptin does not affect results). If something is going to grow again (UNLIKELY, NO BASIS TO THINK THAT) it would take awhile to show up. Take a break, heal, celebrate and do a follow up scan in a few weeks or a couple of months. Are your markers normal and have they ever been elevated? That is another way to follow you. Honestly, the less exposure the better because odds are you will be around for a long time. If you need a scan to breathe out, then just get it over with. They do like surgical areas to be healed since the pet shows increases in metabolic activity, that is what healing looks like on a scan. That said, they can "allow" for that in reading your results but why bother with a scan that has to be "handicapped" so to speak? Part of finishng treatment is realizing that cancer is as much of a mind game as a body disease. You have to find ways to move past having cancer into "acting as if" and living as if you are in a lifelong remission. You are entitled to live that way!! Assuming you are fine will give you a better quality of life than worrying. Best wishes!!

jaykay · 02-20-2015, 08:17 AM

I know this isn't the first time anyone has said this, but I wish we had a "like" button.

Great advice, SoCalGal :-)

KathyT · 02-20-2015, 12:15 PM

Thank you all for your advice, I will check with my friend that is an interventional radiologist regarding recently having my surgery.
SoCalGal- I so need to get there...living as if I'm in a lifelong remission. I don't want to spend the rest of my life worrying...I do have good days where I am positive and upbeat but then this little thing in my head says "well you didn't have a complete response". And then I start thinking why didn't I have a complete response. I still had .4cm area of IDC at the time of my mastectomy and I was off chemo for 6 weeks, so besides the Herceptin I wasn't being treated for the possible spread of Cancer...anyway that is the scariest part for me. I will get there with all your help

Thanks again!
Kathy

KathyT · 02-20-2015, 12:23 PM

My Doctor doesn't test for tumor markers...

RedHen · 02-20-2015, 04:58 PM

SoCalGal - Great post! Just what I needed to hear. My doctor doesn't do any testing for markers etc. They check my blood count periodically because I'm chronically anemic. I think I'll assume I'm fine until someone - with authority - tells me I'm not. Thanks.

What a place! I'm so glad I found you folks.

Ceesun · 02-20-2015, 05:46 PM

Right on the mark, Flori gal! Love ya, Cathy

ayeesha · 02-24-2015, 08:41 PM

HI everyone. I am Ayeesha from the Philippines. My sister, 36 years old,single, was diagnosed with breast cancer, sometime in August 2014 and after one week, underwent mastectomy. It was stage 1 and HER2 positive.She had 6 cycles of chemotherapy, last cycle was last February 6,2015. Her oncologist suggested herciptin but we were not financially ready because it cost a lot here in our country. The onco said ideally it should be given while undergoing chemo but could also be given after the chemo. We are thankful that she survived the 6 cycle of chemo and would like her to be checked if the chemo worke don her. We heard of this CT/PET scan but her onco said it is not really advised for breast cancer patients. She will have her follow up check up on March 3,2015 and will undergo ultrasound and chest xrays and other blood tests. May I ask help from all of you are these the only tests?

May I ask also what are the effects after receiving herciptin? The onco also said it will prevent the cancer cells from recurring up to 50%. Please advise. Thanks.

KathyT · 02-25-2015, 12:04 PM

Ayeesha,
Sorry to hear about your sister. Herceptin is crucial if your sister is Her2 positive, I am surprised your Onc said a Pet scan wasn't advised for breast cancer. It is done to help with staging the disease but if they feel like they caught it early maybe that's why the onc thinks it wouldn't be needed for her?? Ultrasound would be good but feel an MRI would be a better test instead of the chest X-ray. I do get bloodwork done every 6 weeks(a CBC and BMP)
Herceptin has little side effects, I had occasional headaches, constant runny nose and fatigue. It is a targeted therapy to kill the Her2 cells.....