Going in for PET/CT Scans

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megala
megala Member Posts: 14
edited June 2014 in Triple-Negative Breast Cancer

My doctor said Friday that he didn't want to do any scans because he didn't want to go searching for cancer elsewhere. That I probably am fine but he called me this morning and told me that my Alk Phosphtase is high and it is not good news and I need to have the scans. I am freaking out!!! Anyone else have this elevated? Help,...please.

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  • LRM216
    LRM216 Member Posts: 2,115
    edited August 2010

    I know how scared you must be, but please try to stay as calm as you can.  I have never heard of anyone, especially triple negative, not having scans before treatment begins.  I see you diagnose date is just last month.  What have you had done to date?  There are many other reasons why your phosphatase is raised, and there are many things that can be seen on a scan on the liver that are NOT cancerous and are quite commonly found only when someone is scanned.  Have any ativan or xanax to help relieve some of the anxiety, if not - ask for it.  I couldn't have gotten through my very early times without it (like I don't still need it, ha!).  Try to look at the scans as something helpful and positive, as most of us had to have them as well.  Good luck, keep us posted, we are here for you.  Breathe - take some deep breaths.

    Hugs,

    Linda

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  • megala
    megala Member Posts: 14
    edited August 2010

    Thank you, Linda. As you can see I am not sleeping so great. I think you are right...I need to get something for my nerves. I was thinking about this last night while I was trying to get to sleep.

    So far to date, they did ultrasound because I was nursing my son at the time. This was followed by a mammo the same day and then a biopsy on July 11th (week in a half later). They confirmed it was cancer on July 13th. Had a double mastectomy with reconstruction July 27th. Tumor was 4.5 cm but there was nothing in my lymph nodes. They got clean margins with the surgery as well.They did the BRCA test which hasn't come back yet but they are pretty sure I have it. My mom had breast cancer at a young age and was tested. She has the BRCA1 gene. Looks like I have it too. Tomorrow they scheduled me for the PET/CT Scans and Wednesday they are putting a port in. I start chemo Friday now, 4 rounds of AC and 4 rounds of Taxol. Then radiation.after that.

    Everything seems to be happening so quickly!! First my doctors said I didn't need a port, and now I do. They said I wouldn't need radiation, now I do. My doctor told me Friday that there wasn't a point looking for any cancer because if he found cancer elsewhere, there would be nothing they could do for me. NO joke!! Now, he is like, yeah let's go looking, He also said chemo would be in a couple of weeks. Now they moved it to this week. I am just so nervous. Beside myself. I have a 1 year old little boy who turned one the day I got out of the hospital. I can't bare the thought of him not knowing who his mom is!!! I am so ready to fight this cancer but I feel like there are so many changes that I can't plant my feet on the ground firmly. Hopefully, the PET Scan/CT Scan will show I am healthy and we can move forward with the staging I am at right now.

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  • Ricodacar
    Ricodacar Member Posts: 11
    edited August 2010

    Megala,

    I am newly diagnosed myself. Everything has gone so fast! I had my biopsy on Aug. 11, Lumpectomy the 18th, going for the scans the 30th. I am very scared as well and as you can see I'm not sleeping very well either. I just happened upon this site tonight, but what I've read so far sounds so supportive. I look forward to advice and support from everyone. I really can't think of anything to say because I'm as scared as you are. I know I just cry ALOT!!  We all need each other! I'm so thankful God led me to this site!

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited August 2010

    If I may tag on....I am triple negative, and did not have a PET/CT prior to treatment. I have some shizzle going on right now...so curious if others all had scans?

    megala, hang in there...I too have a stressful test coming up due to conflicting MD opinions.  Let's support each other.

    Blessings,

    Traci

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  • living4today
    living4today Member Posts: 215
    edited August 2010

    I know I am a ways out from dx and treatment, but wanted to pop in and say that I never had any testing before my bmx.  After I met with onco, I had some blood work, cxr, and echo (for chemo).  Due to ongoing back pain, I have since had a PET scan, MRI and bone scan.  Good luck to you all that are starting with tx.  I truly didn't think I would live through chemo, but here I am a year later.  The wisdom and kindness from this site helped me through some pretty lonely and scary nights. 

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited August 2010

    megala,

    I really don't understand why your MD said that...remember triple negatives respond very well to chemo.  I ended up with radiation when they initially said I would not need it. I'm hoping the other ladies here can give you some comfort....who are doing wonderfully 5, 10 years out.  Wishing you the best today...keep coming in for support.

    Traci

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  • LJMorris
    LJMorris Member Posts: 7
    edited August 2010

    Megala,

    Try not to worry.  I was diagnosed in February of 2009.  I did my chemo before surgery- same regiment as yours.  Had mastectomy and then 5 weeks of radiation. I agree with living4today at first you think you can't do it but you make it through it. 

    The chemo made my mouth really sore. I mentioned  this to my daughter and my 5 year old grandson heard the conversation.  When they left, he told my daughter  that my toothbrush was to rough.  The next visit, he came walking in with  a pretty pink baby toothbrush in hand, as proud as he could be that he was helping me.  He explained that it was a barbie not spider man like his because I was a girl.  Come to find out the softer toothbrush did help with brushing my teeth.  I still keep the barbie in my bathroom (I have graduated to an adult brush).  Find the little things to laugh and cherish.  May god bless you and your family.

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited August 2010

    LJ,

    oh how very sweet and thoughtful of him....I bet he made your daughter proud too!

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  • megala
    megala Member Posts: 14
    edited August 2010

    Okay, so I had the PET/CT Scans and they came back negative...NO CANCER!!! Whew!!!!!!!! I cried so hard. I was so scared. I was scared about chemo and then just about not surviving cancer...now I am ready full on to kick this cancer for good!!! The only problem is I still have weird liver issues. The doctor has ordered more blood work and they are going to do an ultrasound on my liver. I am thinking really? God, please, one diagnosis at a time, OK? At least we know it isn't cancer. 

    Ricodacar - It is SO hard to deal with this. I finally asked my doctor for anti-anxiety medicine because I was a mess. It helps with sleeping a little but for the most part it just keeps me from losing it all the time. I still cry a lot but I feel like I am not out of control with worry like I was. I think it is the fear of the "unknown" and that is the scary part. The waiting....I am so tried to waiting. They were going to have me start Chemo today but moved it to Monday. So, while you are getting your scans I will be getting my first Chemo. We will be both scared out of our minds together. After doing the scans, the scan isn't so scary. It is the waiting part. Seriously, I would get something from the doctor to help calm your nerves for afterwords....It is what helped me anyway.

    Traci - Wow, so you didn't have scans done in the beginning? See, I wonder if they are just trying to save money or what!!! I know that TNBC has a really high recurrence rate in the first 3 years (heck, that is all from what I am being told). I am wondering if they will give me the PET/CT scan after chemo to see if there is anything afterwords. And they gave you radiation too? I am almost not wanting the radiation because I was told that once you have it, you can never have it again even of the cancer comes back. I still have some time to think about it but I am really nervous about it. Yeah, and my Dr. with his horrible bedside manner!! He did seriously say that there would be nothing he could do for me if the cancer spread. Ever since that nasty comment he has been nice so I am uncertain what I will do. I might change doctors if his tack doesn't improve.

    living4today and LJMorris - Thank you so much. It helps being able to reach out to you gals on here. It helps get perspective.

    Megan

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited August 2010

    Megala, I am so glad your scans came back clear, and want to wish you the best of luck with the the rest of your treatment.

    I am astonished tht your onc said that he had nothing for you if the cancer had spread. Metastatic BC is very TREATABLE. There are very many women who live for years after a mets dx. There are loads of treatment options, even for TNBC. My onc told me when I got my mets dx that he considers it a chronic condition. Quite frankly, it would be a good idea to ask your doc for clarification on that - not right away, the start of chemo is stressful enough without adding something that isn't (and I hope never is) applicable in your case. However, you might want to ask about it later on, just to get an idea of his attitude towards treatment.

    If you're concerned about the need for rads, you have time to get a second opinion. I'm not surprised, given your TNBC status, that chemo was recommended since TNBC usually responds very well to chemo. I don't know anything about rads for TNBC with no node involvement so I can't give advice on it.

    I wish you the best with your chemo. It won't be the most fun thing you've ever done, but it's one of the most necessary.

    Leah

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  • Ricodacar
    Ricodacar Member Posts: 11
    edited August 2010

    Megala,

    You will be in my thoughts in the morning when I am going through my scans. We will get through this together. It is definitely the fear of the unknown and the waiting is wrenching! My Dr. told me to take Benedryl for sleep? She never suggested taking anything else for calming me. I may ask for something to get me through. I wish you the best through it all!

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited August 2010

    Megan,

    Wonderful news about your scans!  I have trouble with "losing threads" so I just saw this.  That means you started chemo today?  Please let us know how you are doing.

    Ricodacar,

    Then I think you had scans today as well.  Wishing you the best.

    I have a repeat CT of the chest on Thursday, and honestly I am very scared.  My radiation Onc put a scare into me that I don't know what to do with.  So let's all embrace each other in these stressfull times.

    Traci

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  • cmksocal
    cmksocal Member Posts: 247
    edited September 2010

    FYI-I am in the club of the no PET/CT scans.  At least not yet.  I had the SNB (no cancer) done before starting neo-adjuvant chemo (4, TC @ 3 weeks).  My last chemo is this Tuesday, 9/7.  I will be asking my onc about what happens next in terms of scans.

    Colleen

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  • DiamondGirl
    DiamondGirl Member Posts: 1,046
    edited September 2010

    Hi, I am also awaiting for my PET scan.  Initially the med. onc said to just continue with my Tamoxifen for the rest of 4 yrs 11 months.  Then my oncotype dx came back at 15, so no chemo. Then I started feeling this swollen feeling at my R ovary (on and off for years now) and I mentioned to my onc why other ladies on this blog has bone scans.  He then said that I should get a PET scan and will find out everything.  In my opinion, the doctors are so busy that they will say something and then they change their mind (because their thinking gets caught up with their talking).  It's almost like - they talk too fast and they got to redact their words.

    I'm terrified and paranoid too, and I think that's normal.  I didn't like this emotional roller coaster either because I'm such a positive person (normally). 

    But we need to saddle up and hang in there.  Thanks to the support of this sisterhood here on this blog. 

     Paula

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  • squidwitch42
    squidwitch42 Member Posts: 2,228
    edited September 2010

    Paula,

    love your Vegas sign.  Do you have a date for your scan yet? Interesting point about Doc's who speak before their minds catch up with them.  I have seen that...I'd rather have an MD who is centered and present with me.  Sometimes I think we have to nudge them a little to be in the room with us when we are there....if that makes sense.

    traci

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  • kathy2
    kathy2 Member Posts: 2
    edited September 2010

    I had triple-negative breast cancer in 2008.  I had chemo, breast implant and doing fine.  I would like to remind everyone that in addition to CT Scans you will also need to be getting a mammogram.  I did not know this and only when I went in for a bone density scan did I find out!!

    Suggest that you discuss with your doctor to ensure that you continue to receive mammograms!!

    Good luck.

    Kathy

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  • imbell
    imbell Member Posts: 659
    edited September 2010

    Surgery, chemo and rads are pretty standard followed by hormonals or herceptin. What I regret is not having scans after my treatment. I had a recurrence in exactly the same areas as the first time causing me to think they didn't get it all. Now I am being scanned constantly. If you know your diagnosis there is a website called Guidelines in Oncology where you can download a PDF file.

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  • Ricodacar
    Ricodacar Member Posts: 11
    edited September 2010

    I haven't heard anything about my scans?! Is this normal to not have a Dr. visit to find out the results yet? I had my scans on the 30th.

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  • megala
    megala Member Posts: 14
    edited September 2010

    Ricodacar - Call your doctor!!! That is TOO LONG!. They can find out the results very quickly. Call your doctor and demand to know what is going on. I had my PET/CT Scans and my doctor had them the next day from the radiologist. And the scans were done outside m care provider. They should not being having you wait this long. I think that is so wrong. Please call them!

    Megala

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  • kaycee
    kaycee Member Posts: 39
    edited September 2010

    I'm also TN and didn't have PET/CT scans prior to beginning treatment. I've always wondered why it wasn't done.

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  • Meggy
    Meggy Member Posts: 530
    edited October 2010

    I wouldn't hold off on radiation to be able to have it later....better to have it upfront and not have to have anything later.  Kick butt up front.

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