Having a scan? Waiting on results? The waiting room is open!

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  • terri-c
    terri-c Member Posts: 180
    edited October 2015

    Just played catch up on this thread, congrats to all with good results, hugs for those with not so good results. <3

  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2015

    I'm glad to hear the good results from recent PET scans as well. Congrats Ladies. Hope this continues.

    Terri

  • suems
    suems Member Posts: 133
    edited October 2015

    Sorry to break the good news trend, but I found out this morning that I have progression. I have one tumor at the top of my left femur and one on my pelvis - both very small, which were found in the post-op scans in January. I have been on Tamoxifen since then, and today got the results from my bone scan that I have a second one in my pelvis, and one in my rib.

    I don't have any pain from these, but asked for the scan due to sore knees and a persistent cough - I didn't ask them to look at my ribs, dammit!

    I have an appointment with my oncologist on the 21st, a week and a half away. Do you think I will be taken off the Tamoxifen and move to something else? It certainly looks to me like it hasn't worked.

    As the late Terry Pratchett would say, it's an embuggerance!

  • Goodie16
    Goodie16 Member Posts: 446
    edited October 2015

    I didn't think I'd be in the waiting room so soon, but I'm here and I'm a wreck. At my last onc appointment, he commented that he wanted me to get a mammogram and breast u/s of my remaining breast. I questioned if this was necessary as my PET at the beginning of September showed NED and my brain MRI at the end of the month was also clear. He said he believes in being cautious, especially since I'm doing so well. Well I had my mammo and u/s this morning. I feel like the tech spent a lot of time during the u/s and my heart is in my stomach. I don't think I'll get the results today, as the tech commented that they are down a radiologist today and running behind. It's going to be a terribly long weekend. I'm scared, but trying to be rational. My PET, my tumor markers, my brain MRI all good...why would something be missed by those that is caught by a breast u/s, right?

  • Goodie16
    Goodie16 Member Posts: 446
    edited October 2015

    Got worked up for nothing! Everything was clear. Damn this anxiety.

  • Bosco19
    Bosco19 Member Posts: 221
    edited October 2015

    but good news Goodie! Congratul

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited October 2015

    Teakie & Goodie..happy for good news.

    Suems...not a bone metster here, so don't know what tx they'll suggest...my guess would be something added, but want you to know I'm sad for progression, but hopeful you caught them while small.  Hopeful they are healed fast!!!

  • kt1966
    kt1966 Member Posts: 1,326
    edited October 2015

    Congats on all the good news :D

    Suems, sorry for your progression. Are you on a bone builder like aredia or zometa? They're supposed to help, I'm on aredia 4 weekly. You may go onto something else, at least there are more hormonal treatments to try like femara. I went on that after tamoxifen (along with zoladex to shut down ovaries).

    You're right tho, it's an embuggerance (I'm reading The Shepherds Crown right now...)

  • suems
    suems Member Posts: 133
    edited October 2015

    Thanks for the support. After surgery, I was booked for chemo, but it was cancelled at the last minute in favor of Tamoxifen when they found the first 2 mets. That's all I've ever been on, and now it appears to have failed. Since this is the first scan since the initial ones, it may never have been working in the first place.

    I'm still in the waiting room here, as I think the Onc was going to order a CT and/or MRI before I see him on the 21st.

  • scrunchthecat
    scrunchthecat Member Posts: 269
    edited October 2015

    I just finished 6 rounds of THP three weeks ago, and had my first post-diagnoses PET-CT today. Since it is Saturday in Miami... I won't be seeing any results until next week. I am also going out of town next week, and am thinking of not answering any phone calls from my ONCs office until I get back. I see him Oct 21 for my first round of H&P 4ever. Based on my tumor markers and the lack of "lumpiness" in my breast and lymph nodes, I am pretty sure that THP has knocked out a lot of tumor activity. It is possible that there is still some activity in my lymph nodes and liver, but I have no way of knowing until I get the results. I plan to drink a lot and eat the forbidden smoked salmon and raw veggies next week!

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited October 2015

    Scrunch...why is smoked salmon forbidden????  I love, love it!!!

  • scrunchthecat
    scrunchthecat Member Posts: 269
    edited October 2015

    RonnieKay - I heard that smoked salmon was one of those "not fully cooked," foods to avoid while on chemo. Not quite sushi, but a little too raw. I also heard honey was a little suspect.

  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2015

    I'm back in the waiting room. I know there's progression, just not how much.

    Unfortunately, my TMs are jumping. CA 15-3 was 579.5 before I started the Doxil. After the 1st tx - 1063.5. After the 2nd - 1841.2. After the 3rd (last Wed blood test) - 2653.5. So I didn't get the 4th tx since onc and I agree no point. I'll have a PET/CT on Oct 21, then new tx plan. TMs have always been accurate for me.

    I was supposed to travel to the U.S. to visit family (supposed to leave tomorrow) but I've had to push off the trip. I hope once new tx is in place I can travel soon. Inner Child is having a tantrum over that.

    So please make room for me and hand me a blankie and a teddy bear.

    Leah

  • diana50
    diana50 Member Posts: 2,134
    edited October 2015

    Leah

    Standing beside you. Handing you a blankie and teddy bear. I experienced progression on lxempra. Now on gemzar.

    New treatment plan is new hope.

    Hang in b/c you just never know how new treatment will help.

    Diana

    image

  • suems
    suems Member Posts: 133
    edited October 2015

    I'm still in the waiting room but I feel like I've cheated. Or that I've caught out my Onc. - not sure which yet. I had a few issues and when I saw my oncologist on 16th Sept,, he said he would order x-rays, a bone scan, and a full body CT. I had the x-rays that day, and had a bone scan on 29th of September. I have not yet heard about the CT. I have another appointment with him next week, on the 21st.

    I had signed up with my local med center to have online access to my medical records and test results, so I have seen my x-ray report, which says nothing has changed (despite giving a different location and size for my femur tumor). Last Friday 9th, I read my Bone Scan report, which says I have 2 new tumors - definite progression. Damndamndamn !!!

    However, despite his promise at the time, he has not told me the news about progression. I have been expecting a call from him, or an appointment for a CT or MRI, but nothing, nada, zilch. Not even a call from my Med Center. I've decided to say nothing, and wait to see when he sees fit to tell me that the Tamoxifen has failed.

    It was partially expected, so not a shock, but it will be interesting to see how he breaks the news to me. I hate being left in the dark (even though he doesn't know I already know).

    GGGRRR!!!

  • scrunchthecat
    scrunchthecat Member Posts: 269
    edited October 2015

    So I'm out of town, and my oncologist knows this. Nonetheless - he posted my PET-CT test results in my online records last night. And - it looks like I might have had a complete response to treatment! It's hard to say with absolute certainty (the test is written in a language that is nearly incomprehensible), but it seems that "ONLY MILD RESIDUAL LOW LEVEL UPTAKE WITHIN THE RIGHT BREAST LESION" is present, all of the lymph nodes are "resolved" and about my liver, which had a bunch of small lesions they said: "PREVIOUS SMALL FOCI OF ABNORMAL UPTAKE WITHIN THE LIVER IS NO LONGER SEEN."

    I'll know for sure when I talk to my oncologist next Tuesday, but it looks good. "IMPRESSION: OVERALL POSITIVE RESPONSE TO TREATMENT," the summation read. So I am happy and hopeful. For the record, I am one of those HER2+++ patients (no ER and almost no PR) who received the Cleopatra protocol.

    Here's hoping for good news for all of my fellow Stage IV sisters.

  • terrij152
    terrij152 Member Posts: 530
    edited October 2015

    Scrunch, this is great news! Doing the happy dance for you!!!!!

  • scrunchthecat
    scrunchthecat Member Posts: 269
    edited October 2015

    Great news, suersis! May all of your SUVs register below 3!

  • artistatheart
    artistatheart Member Posts: 2,176
    edited October 2015

    Leah, sorry to hear your news was not great. Hang in there and here's hoping the next tx is the magic bullet. Leah,I am getting my first scan since tx started right before Thanksgiving and don't think I can wait for results due to anxiety! Did it make your trip better? I'm hoping of course that my news doesn't ruin the Holiday for family....Suems, it is very frustrating and disconcerting when your Onc seems so lax in keeping you in your own loop. Mine is not very good at building my optimism....Hang in there and let him know how you feel, and I will try and follow my own advice! Great news Scrunch, Goodie and suersis! Here's to many more! Good to see you post RonnieK!

  • suems
    suems Member Posts: 133
    edited October 2015

    Well, the verdict is now in. The jerk I didn't like handled himself quite well, so I have decided to stick with him for a while longer. So, I have a second met on my ischium, and a new one on my 9th rib. The one on my femur doesn't appear to have changed much.

    Tamoxifen has obviously failed, so has been stopped. (The question of course is did it ever work in the first place, since this is my first round of scans since diagnosis in Feb).

    I am now on Arimidex, and will start on Bisphosphonate infusions monthly once I get clearance from my dentist, and have a port put in.

    I am also being referred back to the Radiation Oncologist to have my hip zapped for pain relief. And a CT just to ensure nothing else has cropped up as well. Then it will be December, and time for a mammogram on my remaining boob, "Poor Old Lefty".

    I feel like I'm back at square one, with everything starting up at once. This roller coaster ride feels more like a merry-go-round, I'm going round in circles getting nowhere. Let's just hope I don't fall off!


    So, now I'm waiting for all the appointments to roll in, waiting to see what the CT shows, waiting to find out why my LE arm hurts so much.... I think I'm beginning to understand why they call us PATIENTS!

  • scrunchthecat
    scrunchthecat Member Posts: 269
    edited October 2015

    Suersis - "SUV" is PET-CT technician speak for Standard Uptake Values, which basically measures the intensity of metabolic activity in different parts of your body. Whey you take the radioactive glucose, cancerous cells react more - intensely - and "light up" on the PET-CT imaging. The brighter they light up, the higher the rate of metabolic activity, and potentially the more active the cancer area is. My oncologist told me that an area is considered cancerous if the SUV is greater than 3.

    Amazing what you can learn in the first 5 months of a cancer diagnoses.

  • suems
    suems Member Posts: 133
    edited October 2015

    Grrr... still waiting. I just found out that my CT has been ordered, but will not happen for 6 weeks! There are only 2 machines in this region, and a major shortage of radiologists, so the queues are horrendous. Non-urgent people have to wait up to 6 months, but I thought cancer was a good queue-jumper. Apparently not.

    But, in the long run, I know I have progression, and my drugs have been changed, so will anything change if the CT shows up anything? Is the treatment different from Bone mets to say, lung or liver?

    Now, everyone - repeat after me: "I am a patient patient, patiently waiting" And try not to scream!

  • Aoibheann
    Aoibheann Member Posts: 555
    edited October 2015

    Hello ladies, heading in for bone scan on Monday and CT on Tuesday. My nerves are starting to quiver, really nervous about progression as I'm coming up to the six month mark and when I was on faslodex previously my scans showed progression at this stage. yuch! yuch! yuch! hate this....

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited October 2015

    Oh Leah...I'm sorry you couldn't take your trip...soon, I hope...and that you have a new tx plan in place.  I am praying for healing.

    Aoibheann...praying for calm feelings going into scans next week!  I know the feeling of getting past "time markers."  I had 2nd dx 2 yrs from 1st dx, then had 3rd dx 1.5 years later. It'll be 3 YEARS since last dx in Dec!!!  So, I'm sayin you're going to wave adios to that 6 month marker!!!   

    Scrunch....happy dancing with Terri!!  My guess is your dr posted results because he was sure it would be welcome news!!  

    Suems...I can't imagine how you handled your onc's "news" about results you already had. I would've had a somewhat sarcastic comment...maybe something on the line of..if it were your wife/mother/daughter, would you mind if the dr didn't call w/results?  And...if he'd have made contact earlier, would your wait time be 2 weeks instead of 6?  Just wanting you to get the attention you deserve!!!  

    Artist...So hoping your scans show good results...and it can be a joyous Thanksgiving!!!!  

    Wishing strength & healing to all my sisters!!!

  • Max_otto
    Max_otto Member Posts: 150
    edited November 2015

    My thoughts on results from CT scans and markers. I have always requested the results prior to the MO visit. They are posted on line in my medical chart and if they are not posted I request them from the clinical coordinator. This gives me time to think about the results calmly and focus on what I need to know. I will have scans next Monday and expect results Tuesday or Wednesday, Thursday I will see the MO.

    Suems,

    What is important is clear communication between your medical providers and you.

    Be firm in what you expect in notifying you when a result is expected, if necessary ask when they will get back to you, if they don't call or email, a written request usually gets their attention. I did this with a plastic surgeon a few years ago and I noticed when I wrote he responded quickly. Hope the new drugs will help you.


  • Aoibheann
    Aoibheann Member Posts: 555
    edited November 2015

    Artist.. hope you got good news

    RonnieKay, thanks for your kind thoughts. I had my nuclear bone scan today and though tech said it would take approx 30 mins it took an hour. Didn't say anything to my family but am starting to quietly freak out. CT tomorrow then a long wait to hear results. We don't have results posted on line here. Instead we have to phone Daycare Onc after a couple of days and then wait for the onc registrar to ring back. These are junior docs serving a rotation who know nothing about you. Often their english isn't the best. Onc only rings if results are concerning. And I'm going private...

  • artistatheart
    artistatheart Member Posts: 2,176
    edited November 2015

    Thanks RonnieKay and Aoibheann, Unfortunately my blood work came back showing abnormal liver function. We have to move my scans up to an earlier time, still waiting for her to call back. Needless to say I am a bit stressed out. Trying to stay calm but right now the acute disappointment is just too much. I really don't know how some of you endure so much for so long and remain calm and optimistic but am trying to follow your lead...

  • patti4511
    patti4511 Member Posts: 180
    edited November 2015

    well went for a ct scan last monday which showed everything was stable except they seen low density in my liver so yesterday went for a mri on the liver so scared my anxiety is through the roof cannot even eat so nervous asked my dr if i could get the results today and he said he doubted it since the radiologist was going away and they were only reading the emergency's first

    Patti

  • ChelleG
    ChelleG Member Posts: 540
    edited November 2015

    Patti4511, wouldn't you think that possible cancer in your liver IS an emergency! Well it is in my book! I'm thinking about you! Try and stay strong, eat small amounts often if possible. It can help with the zero appetite nervous queasy stomach. Warm hugs to you! Chelle

  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited November 2015

    I completely understand, Artist.  I'm going for an echo this am...thought 9 am & then checked...oops-8:20, and Seattle traffic is awful, so with DH driving, I'm trying to keep my heart calm, and it's only an echo.  Just thinking now that I'm only on herceptin, my heart needs to stay strong...wish our minds didn't have to work overtime but this disease requires it.  Peace to all.  


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