Good news! But did you have a PET scan when treatment was over?

IDCSister

We got GREAT news on my sister all around today! (34 years old, Stage IIB, triple positive originally in one lymph node). She is officially cancer-free per pathology this morning (Praise God!) and is still healing in the hospital from her double mastectomy, and they only had to take 3 lymph nodes which were all negative, with totally clear margins. She won't need any radiation and other than being on Herceptin for another 6 months, that wraps things up. My question is this: one of the oncologists we interviewed in the beginning, wanted a PET scan. However, my sister chose a different oncologist who said a PET scan at the time wasn't necessary. Now that things are wrapping up, so to speak, based on the pathology he won't say a PET scan is entirely necessary unless my sister does indeed want one. That makes me so nervous, given the nature of her cancer type. I'm THRILLED for her news but there is this piece of me that can't rest easy because of not having a PET scan and the tendency of her cancer type to spread. Did you have one after treatment? Thoughts on this? Would love some input.

ElaineTherese

Hmmm.... I had a PET scan before beginning chemo (to provide a baseline) and one after chemo (to see the result). Then, I had a PET scan to look at an area that lit up on previous PET scans. But, I also had three MRIs for the same purpose, and the results were the same (my cancer was localized and hadn't spread). Did your sister get an MRI? If so a PET scan might be redundant.

I think I got PET scans because I was stage IIIA. In any case, the problem with PET scans is that they produce a lot of false positives, which can lead to further scans (in my case, a CT scan and an MRI) which show that nothing is wrong. Those false positives can create a lot of unnecessary worry. If your sister experiences an unexplained pain somewhere that lasts more than two weeks, she should call her oncologist. Otherwise, I wouldn't sweat it.

mike3121

My wife recently had a PET scan. Clear of cancer but some other issues came up. It lit up her left pictorial muscle, probably due to a strain. Also one thyroid lit up. A scan showed it okay but a blood test showed her thyroid was way under active. My wife's oncologist explained that regular PET scans, while showing cancer also, because they are so detailed, pick up other things, things that can cause unnecessary worry.

My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.

My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.

A little over a year later, Nov 2014, the cancer morphed and went crazy (grade 3). She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.

After all that she had to have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign. Happy dance, she's NED and back on tamoxifen.Right now she is under intense screaming pain from sciatica down her right leg.

Prayers and fingers crossed.

Sassa

I was diagnosed with stage 1 cancer in November of 2006. Not only did I have a pet scan before starting chemo, my oncologist was very aggressive and did PET scans every three months for the first three years and every six months for the next 3 years after that.

I now have yearly chest x-rays.

SpecialK

I was also node positive and Her2+ and had a pre-chemo PET, a post-chemo PET, one a year later, and I just had one at my five year point.

Arizonahiker53

thank you for updates- I recently completed treament for Stage 2 A IDC,( ER/PR+/HER2-) had left masectomy six months ago and partial axllary node dissection ( had one node positive but non beyond that )- Completed 4 rounds of chemo and plan to do recon later this year. I had CET scan that was good ( insurance company would not pay for PET scan). My oncologist seemed 'wishy washy" from onset as to if I even needed to have CET scan and really left it up to me.

Now I guess I have to have blood tests every few months to see if any bc markers in blood but another oncologist said there was no reason to do scan or blood tests unless I felt any symptons of metasasis . I get that doctors want to be proactive but don't want to live the rest of my life going thru tests that can cause false positives. I would rather just go for mammograms ( on right ) yearly as recommended, take Tamoxifen, and not deal with the angst --I am planning on letting my oncologist know as it seem like many different opinions on this

Sassa

Part of the reason my oncologist was aggressive in scans and follow up was that not only was I ER/PR-, HER2+, my KI67 was 70% which means the BC was extremely fast growing. The oncologist wanted to know if I was reoccurring ASAP so I could immediately go back into treatment (she had me keep my port for two years after finishing my year of herceptin).

carolynmorgan2016

I was recently diagnosed with Pagets Disease. Because it was so hard to find and diagnose, my primary doctor scheduled me for a pet scan prior to surgery. After surgery the surgeon said a pet scan was not necessarry. Because I had been preapproved, I was able to get the scan, which eased my mind.

carolynmorgan2016

I recently had bc surgery due to pagets disease in left breast. My left nipple, part of the areola, and ducts were removed. I'm currently receiving 20 rounds of intense radiation. I am also having problems with pain on my right neck, shoulder and upper arm. Has not been diagnosed yet. Could this be associated some way to the surgery or treatment?

carolynmorgan2016

Still in treatment. I plan to have a other scan after treatment. I am HER2 Positive. My planned course of treatment following radiation is Tamoxifen for life. I am 65 and new to this.

Moderators

Welcome to BCO, carolynmorgan2016! We hope you find the support you're looking for as you continue treatment. You might also be interested in our Paget's thread, which you can find here: https://community.breastcancer.org/forum/137/topic....

The Mods

Konakona

I am also her2+, pre chemo I had breast MRI, chest x ray, abdominal ultrasound, bone scan and tumor markers. I will have tumor markers every 3 month