Tests????

Maya847

Hello all, I am new to this site.  I am 46 years old and was diagnosed with IDC on August 25, 2011.  Had a lumpectomy with sentinel node biopsy on Sept 7th.  My surgical oncologist told me the medical onco would order a PET scan once I met with him.  I met with the medical onco on Sept 14th.  He ordered the oncotype dx test but advised me he did not believe in doing the PET scan as my other tests indicate the cancer has not spread and the CAT and PET scans have to many false positive results, causing more emotional stress to the patient.  My initial blood work, chest x-ray and lymph node biopsy were all negative.  Just curious if others had any scans done??  Thanks!

Annicemd

Hi, it is not usual to do PET scans as a work up for early stage BC. The point about false positive results and finding incidental irrelevant lesions etc causing a lot of unnecessary stress, is totally valid. Also PET scans emit a massive amount of radiation so best to reserve them for if/when they are absolutely necessary. I am a medic with similar BC to you and I have not had PETCT but I did have an MRI breast scan to make sure there were no other hidden nasties in my breasts and I think that is the most important imaging for early stage and it is non radioactive.

Good luck with treatment

ALittleBitBritish

I had 1.4cm ILC in my sentinel node, does anyone have an opinion on whether I should have a PET scan?  

SpecialK

Maya847 - Since you have no nodal spread I would think it pretty unusual for a PET scan for you, but ALittleBit British I would ask for one if I were you.  My MO did one for my micromet sentinel and 6mm additional node.  You have a sizeable sentinel.

Maya847

Thanks, I think I was questioning it more because my surgical oncologist had said it would probably be done.  I have not had an MRI.  AnniceMD, when did they do yours?  Did you do radiation?  The docs already said I will need that due to the lumpectomy...then the tamox.  Waiting on the oncotype dx test to determine if chemo will be in my future. 

SpecialK, I think I will wait to see the surgical oncologist again and ask him why he thought the medical oncologist was going to order one. 

thefuzzylemon

I might be a little on the nutty side...but any test they want to give me for whatever reason is A-OK by me...but I'm a pretty late stage and had a rough ride with the chemo's and rads and such.

I'm pretty sure I glow in the dark and would be restricted from walking the streets in California but I have given all of my trust to my healthcare team ... It's your journey and I am happy to see you found the women here as part of it

((((HUGS))))

Maya847

Thanks for making me smile thefuzzylemon!  Hugs back. 

SpecialK

maya847 - Sorry for the confusion - I was directing the sizable node remark to ALittleBit British.  That is why I bolded her name.  She mentioned that she had a 1.4cm cancer in her node.  I believe that you had no cancer in your nodes, correct?  That would be why I think they may not order a PET for you.  If your breast tumor was small and you have no nodes they may be assuming that there is no need.  Are you having chemo?

thefuzzylemon

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Maya847

Sorry SpecialK, you did not write anything confusing...I am apparently a little slow...lol  after I reread your post I understood what you were saying and edited my post. 

SpecialK

maya - that is ok!  I just didn't want you to be scared!  Not that I want ALittle Bit British to be scared either - but she already knows about her node.

sesohio

Looks like I have similar stats, Maya847, and I've not had a PET. Did have MRI on both sides, after biopsy, before surgery. Welcome to the site, everyone here is wonderful!

Maya847

Thanks everyone, sounds like no need for PET scan, and I am ok with that, I was just curious.    What about the MRI?  Should I ask about it or just assume if they thought it was necessary they would have ordered it?  Does everyone pretty much get the gene test (I think it is BRCA 1 & 2?)  Doc told me we would probably be doing that in the future but I do not know if that means after the oncotype test or after treatment....When I met with him it was a lot of information to take in and I can not remember....thanks again!

sesohio

Wow, that's interesting about the weakly positive ER/PR. I'm going to ask my BS and onc to see what they say. Maya, my surgeon ordered the MRI to see if there was anything in the other breast. I would not have known to ask for it at that time, as I was still pretty unknowledgeable. On the oncotype test, my insurance wouldn't pay for it as my IDC was slightly under 1cm, so lower than some criteria they set.

SpecialK

maya - I don't think most get the BRCA testing done unless there is a very strong family history of BC and/or ovarian cancer, or some other medical reason.  The testing is quite expensive and I know some insurance companies will not cover it without compelling reasons.  I did have it done on the day I was diagnosed because I am adopted. I was originally offered lumpectomy, and they wanted to know if I was positive because their recommendation would have changed to a BMX.  I had no access to information so they tested me.  I was negative but elected the BMX anyway.  Also, I did have an MRI after biopsy but before surgery.

BTW - my docs also said positive is positive on the ER/PR, regardless of how weakly positive it is.  My ER was 96% but my PR was not as strongly positive.

Maya847

Thanks SpecialK, I do not have much to go off of family history either.  My mother died young from a pulmonary embolism (which makes me weary about tamoxifen) and I have no sisters.  Other than that my maternal grandmother died from ovarian cancer which met. - I believe she was in her late 40's.  I have one paternal aunt with breast cancer.  I think the doc is waiting to see the oncotype results, before the BRCA testing but I forgot to ask much about it.  I only heard if it comes back positive we would have to discuss BMX and removal of ovaries.  Lot to take in at first appt with him.  I did not get any % on my ER/PR results...only that they were both positive.  Thanks to you and sesohio for your input.  I think I will ask the surgeon when I go back about the MRI and go frmo there.  Had a call from the lab today that is doing the oncotype test.  They wanted to discuss reimbursement, so initially I thought my insurance was not going to pay for it.  Thankfully they were just calling to tell me it was covered.  Never had a lab do that before! 

SpecialK

maya - a lot of times with these more expensive tests the labs will first determine if your insurance will cover it before they actually do the testing so that you do not get stuck with a huge bill.  BRCA is the same way - they check with insurance first.  That is nice because it helps eliminate any surprises - receiving a diagnosis is hard enough without getting a giant unpaid bill from the lab in the mail!  These are specialized labs, often with intellectual property rights for the specific testing, so the costs are quite high.

wildrumara

I was diagnosed last month (August 23rd) and met the breast surgeon on August 29th who immediately ordered a PET scan and an MRI on me.  I had them both done a week later, one right after the other,  and I was pretty nervous about the results, as I know that PET scans are pretty invasive (right down to the cellular level) of our organs.  Anyway, both reports came back negative for any signs of mets, which was such a relief!!!  I have a strong family history not only for breast, but for other cancers, so maybe he was just being careful.  I am so happy he ordered it.  I also had the BRCA which came back negative.  I am, so far, stage 2 with a 2 cm tumor, no obvious lymph node involvement on ultrasound, PET, or MRI. 

Maya847

The more information I get the more confused I am!  today I received my oncotype test score of 45.  I knew right away this meant chemo, but when the doctor told me that the onco test said I was ER negative I about fell off my chair.  How does this work?  How can the lab that tested my original sample for the doc say I was positive and now I am neg.  Who do you believe?  Doc said with this high of a score I will do six weeks of chemo of a three chemical cocktail...which I have no idea what is in it.  All I know is he said it can be hard on the heart and will need echocaridograms regularly.  Can anyone give me a clue as to what all this means?   All of this was given to me over the phone and I do not see doc until next week.

Annicemd

Hi I have been away! Maya, I would ask for MRI because it gives you a baseline knowledge of both breasts and spots any other tiny lesions that can occasionally be missed on mammo (that happened to me) MRI breast is time consuming and expensive so is not offered widely but is very safe and offers so much more info than other tests. I think it would be done routinely by the BSs if it was not so expensive! So if you can get one I would go for it. If you are young with any family history BRACA test is advisable. I have not had it yet but intend to!

Annicemd

Not meaning to state the obvious but guys don't forget that a PET scan does not pick up the "micro mets" that BC loves to seed, that's why us estrogen positive gals need all that tamoxifen even when the PET is clear