Help! Tumor size changed in 2 weeks?

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AndreaT
AndreaT Member Posts: 14
edited August 2017 in Just Diagnosed

I hope someone else has had this experience and has some advice for me. I found a lump, in spite of 8 years of annual mammograms - dense breast tissue category 3. After 3D mammogram, US & biopsy, I was told tumor was 2.5 cm x 2 x 1.8. Saw breast surgeon the next week; her US said 2.7 cm.

Then HER2 status came back +++ (ER+/PR+, also), so the game plan changed to chemo first, THCP. Had an MRI last week that indicated at least 1 lymph node is involved, nothing in other breast. However, MRI indicated tumor is 5.3 cm- !! I asked my MO twice if this thing is growing that fast, but he said no, there must have been a measurement problem with the US.

So now my treatment plan has changed and I'm stage IIIA instead of IIA. Plus, had a PET scan on Friday. Now I'm absolutely terrified that it's stage IV right off the bat. When asked, the MO said the chances of cancer metastasizing were 10-15%.

I'm trying to stay sane- got a scrip for Xanax which is helping tamp the anxiety so I can function. It doesn't help that two weeks ago I got t-boned in a car accident and my car was totaled- but I was not. ; ) We also moved our youngest to college last week, so empty nest has begun, and my husband works nights. I'm using the heck out of my support system with phone calls, but don't want to "wear anyone out" too soon.

Does the tumor size changing sound odd? I'm to get my port on Tues., then start chemo in Wed.

Any other advice? I've been lurking here for a couple of weeks and you all sound PHENOMENAL!

Thank you!

Andrea

Comments

  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2017

    My biopsy showed 2 cm. A mo later MRI showed 4 cm. On the sx table, 7 cm. My tumor was dumbbell shaped in such a way that 3 cm was completely missed on imaging. Everything is an estimate/best guess until sx path comes out. Try not to stress. You are getting going with treatment soon. Once you start you'll feel better. It's always hard, the waiting for something part. Best wishes.

    PS: Join the Sept 2017 chemo thread where people are starting to share. That helps. Get supplies and such in order for Wed.

  • PauletteK
    PauletteK Member Posts: 2,205
    edited August 2017

    Could someone make a mistake when they measured your tumor? You know nowadays people make mistake all the time. Most important is take care of your cancer then deal with the SE when you have chemo. One day at a time, and don't overwhelm yourself.

  • Freya244117
    Freya244117 Member Posts: 603
    edited August 2017

    It is quite common for measurements to be different between US, Mammogram and MRI.

  • pupmom
    pupmom Member Posts: 5,068
    edited August 2017

    Doctors make mistakes all the time! On the plus side, my tumor was smaller than thought from biopsy. On the negative, some cancer had gone to my nodes, which none of the imaging had indicated. We really don't know the whole story until after surgery.

  • AndreaT
    AndreaT Member Posts: 14
    edited August 2017

    Thank you all so much- that makes me feel a lot better! My doctor team has seemed very competent so far, but the differences in tumor size was strange. Not good that it happens to others, but there is a measure of comfort that it does.

    I will definitely check out the Sept. 2017 chemo group- want to get a chemo bag together, and I'm sure there are other things, too.

    Thanks, again

  • Outfield
    Outfield Member Posts: 1,109
    edited August 2017

    It's not even necessarily a "mistake." MRI and US give very different pictures. They don't obtain their images in at all the same way, and those images look very, very different. In either case, they are both just pictures and no picture is a 100% accurate representation of reality.

    A biopsy does not tell size. A biopsy is taking an intentionally-small piece of tissue to look at under a microscope to find out what it is. Many biopsies are US-guided, so there is an US report along with the results of the biopsy, but - less often today - many, many biopsies have been done without any guidance other than what the person doing the biopsy sees and feels.

    In truth, you do not know the size of the tumour until it's been removed and measured by a pathologist.

    I wish you well with this. I was diagnosed also at Stage IIIa, with some bad prognostic indicators, but I'm 7 years out now from diagnosis.

  • LeesaD
    LeesaD Member Posts: 383
    edited August 2017
    My biopsy US and radiologist said my tumor was 6-8 mm's. My MRI report echoed that and said no node involvement. Post surgical pathology showed my tumor was 3 cm's so more than three times the size and two sentinal nodes with micromets. Had ALND three weeks later and had two fully
    positive axillary nodes. All surprises. Was concerned my tumor was growing fast but have been assured it was just incorrectly measured. I was not happy with place that did my MRI and I might even request the films at this time and have them reviewed by someone else just to see how they would have reported it. We had to repeatedly call the MRI place and request the report and it took quite a while which was so odd. They had my original biopsy report re sizing and I think they used that measurement as opposed to drawing a conclusion based on the MRI itself. I can understand an ultrasound being so off but an MRI saying same size as US and no node involvement and for it to be so completely wrong and off bothers me still to this day.
  • mkn86
    mkn86 Member Posts: 250
    edited August 2017

    hang in there. You're starting treatment soon.

    I'm also getting freaked out by the thought that the tumor is growing but i have no way of knowing either. i'm 4 days away from my flight home and trying to hang in there too.

  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited August 2017

    I wouldn't let it bother you so much. My ultrasound made it look like three different tumors. Two surgeons and one oncologist felt it was one after physical examination. I won't know for sure until this Wed. when I have my surgery.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited August 2017

    My diagnostic ultrasound after mammo said 7mm. The biopsy ultrasound said “9mm at longest dimension." Surgical path report said 1.3cm. But just as many tumors turn out to be smaller “in the flesh" than imaging had indicated. Measurement is an inexact science—you can't know for sure till the tumor is out and in the surgeon's hand en route to the specimen jar (or whatever they put it in these days). My biopsy path report also said “DCIS: present, focal." My surgical path report said “no DCIS or lymphovascular invasion." Go figure…but don't let it make you crazy.

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited August 2017

    Mine was .8mm with US, 1.2 with MRI, 1.8 actual following surgery.

    HUGS to you. Take a breath and ask any and all questions that you need to. You've found the greatest place for support. You will get through this.

  • Cliffyw
    Cliffyw Member Posts: 34
    edited August 2017

    Andrea, my wife's diagnostic progression was somewhat similar. The ultrasound said 2.5cm, but a later MRI said it was 5.9cm. We won't know the actual size until we get the pathology result from her surgery later this week (surgery was last Wednesday). You didn't mention if your tumor is IDC or ILC, but it is the case that ILC does not image as well as IDC so ultrasounds/mammograms are likely to miss the full extent for that type. Since her diagnosis, I have found some research papers discussing actual tumor size compared to MRI imaging. In general, MRIs due tend to overstate the size of IDC tumors while they are as likely to overstate as understate the size for ILC.

  • AndreaT
    AndreaT Member Posts: 14
    edited August 2017

    Thanks, ladies & gent- I had a cell phone problem and called the oncologist to make sure they didn't need to talk to me before my appointment tomorrow. They said they have the results of the PET scan but aren't allowed to discuss them on the phone. I asked if all was clear, and she reiterated, then said that I would have questions.

    Now I'm super worried! Wouldn't they just tell me if the scan was clear?

  • Cliffyw
    Cliffyw Member Posts: 34
    edited August 2017

    Best wishes on the result tomorrow Andrea. It very well could be their practice not to give any input of results on the phone, so as to not be in the situation you fear you are in (that not giving a negative would mean a positive).

    We actually saw two surgeons before deciding on one. One wanted a CT/bone scan right away, while the other did not. My wife opted for the one who did not want the scan (based on other factors). In one way I am relieved since finding out would increase our fears substantially, and in another way, I would like to know from the start if it has spread so it could be treated right away if so.

  • Outfield
    Outfield Member Posts: 1,109
    edited August 2017

    Andrea, that's a very common policy. People answering a phone aren't usually qualified to give out medical information or to interpret something like a PET report. The report from a PET will not say anything like "clear" or "positive;" it will be a few paragraphs. Everywhere I've ever worked or been a patient, only trained medical professionals (MD's, RN's) can give out medical information. Whether or not they'll do it by phone varies. It's also possible that the person telling you the report has been received can't even see the full report. In one of the electronic medical records I've used, that's definitely the case. In another, the text won't show until you click on it unless it's the absolutely most recent entry. Non-medical employees of a clinic or hospital have no business poking around in the medical parts of the chart, and some electronic medical records are able to track that sort of thing. Hope this helps. They were just doing their job.

  • Yvonne55
    Yvonne55 Member Posts: 4
    edited August 2017

    the waiting and not knowing is the worst. My tumor was actually smaller than what it measured on ultrasound. You won't know for sure until after surgery. My advice to you is take it one day at a time. Cannibas high in CBD is one of the best treatments for anxiety. I have been on it since the day after my surgery and find its the most effective drug I have tried. Unfortunately this is out of your hands and until you have answers your just speculating. Don't do that it will drive you insane. Just stay busy with whatever brings you joy. I wish the best for you and hope it will all be good news!!

  • AndreaT
    AndreaT Member Posts: 14
    edited August 2017

    Thanks so much for the encouragement, Cliffy, Outfield & Yvonne. I feel much more grounded now.

    That helps

  • AndreaT
    AndreaT Member Posts: 14
    edited August 2017

    Got results- PET scan showed tumor, 2 lymph nodes, and stomach gastritis that I already knew about. Praying your results / surgery come out well, too, Mkn86 and ShellsattheBeach-

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