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Second diagnosis--over this

gb2115
gb2115 Member Posts: 551

I already posted on the worried about recurrence forum, but unfortunately here I am. I'm over this. New tumor in the old surgical area from last time. I'm planning to get UMX, but they are sending me through the scanning pipeline because I feel icky a lot of the time and want to make sure there's nothing else wrong. I'm anxious about these scans, waiting for the hospital to call and schedule them. I'm anxious about work. I'm super anxious about getting all of these IVs...and I'm imagining the very worst case scenario about literally everything. It's hard not to, because I feel like there's a giant target on my back and everything is going wrong.

I'm in my office trying not to cry. It's hard to focus on work.

I do have an appointment with my old therapist tomorrow, so that's good. You'd think it would be easier somehow, the second time around, but it's not.

Comments

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited May 2021

    I know exactly where you are. I always knew I was high risk be diagnosed again (about 20%-25% risk of new primary, according to my MO and everything I'd read), but hey, that means a 75%-80% chance of not being diagnosed again, right? So although I was realistic, I always hoped I'd land on the good sides of those odds. And if I didn't, I figured that having been through it once, the second time would be easier. Been there, done that, know the routine.

    Nope. I found what you are finding, which I think it's really common among all of us diagnosed a second time. Even if it's not a surprise, the second time is harder for most of us. It's like "Crap, I've already gone through this once, and now I have to do it again?" And "I finally stopped worrying about the future and now it all starts up again?". And "I was pretty lucky with this the first time; what are the odds that I'll be lucky again?". You can add your own to the list, but I think it's how most of us react.

    I'm sorry. It is really difficult. And it just plain stinks. Not that it's particularly comforting, but know that you are not alone.

  • 2019whatayear
    2019whatayear Member Posts: 463
    edited May 2021

    Im sorry, this really sucks. I'm glad you are going to see your therapist tomorrow.

  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    I forgot how long this all takes. Here I am, waiting for someone to call me about further scans (CT/bone), and who knows when the next available will be for that. Meanwhile, this thing is just in there growing...

    She said the growth rate was 10% though, so I guess that's good. If I hadn't gotten the MRI (which I almost refused), I wouldn't have even known it was there. Embedded in the scar tissue, I eventually found the lump the day before the biopsy, but it was hard to find. The oncologist missed it at my appointment in April. So I guess, this could have dragged on for months and months, and it didn't, so that's good, so I guess I can try to be patient waiting on scans.

    The doctor told me last time she is ok with up to 6 weeks after diagnosis for the most aggessive cancers, so this is still ok, right?

  • Carlsoda
    Carlsoda Member Posts: 120
    edited May 2021

    Hi gb2115 - looks like we are on a similar path. My first cancer was 2016 as well and also came back in the same area. Had my UMX last Wednesday and doing better and better each day.

    I had all the typical scans ahead of time which I was thankful for - breast mri to ensure it wasn’t in the other breast as well and CT scans from neck down to pelvis - all clear!

    Seems like anything with medical is hurry up and wait. But just let the people behind the scenes get everything lined up and keep your ringer up on your phone for calls!

    Just take it one step at a time. I had to have a couple of apptswith my surgeon to know which way I was most comfortable with and boy did that make a difference. I opted for no reconstruction and just the one breast. Still happy with my decision!

    Sending you lots of hugs!!!


  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    I'm opting for no reconstruction as well.

    I missed the call from the scheduler and had to leave a return voicemail. I hate waiting for phone calls.


  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    Ok, bone scan on Friday and CT scans are next Friday. Whew.


  • LivinLife
    LivinLife Member Posts: 301
    edited May 2021

    Sorry you find yourself with a recurrence gb!! Best with bone scan - glad another "wait" is over for you... please let us know how things unfold.... Gentle hugs....

  • hahlyn
    hahlyn Member Posts: 128
    edited May 2021

    Hello

    I'm in this group too first time around Aug 2016 and again October 2020. With covid out of control in California I didn't have my mastectomy until Feb 2021. No reconstruction. Currently on TC #2 and 2 more to go. I found mines via mammogram it was calcification 5mm at the scar of my lumpectomy. I was hoping to just have the mastectomy but oh no!! It's triple negative..i thought it would be better the second time because I know what to look for but emotionally it's rough. Chemo is what it is losing your hair again will never be easy. Just pushing through like last time. At this point I think I need to see a therapist just to process everything.

    Hahlyn


  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    Hey Hahlyn,

    Sorry you are going through this too. I spoke with my therapist last night and it did help. I think my biggest fear is how delayed everything gets. I also remember that cancer moves slowly and she said my growth rate is on the lower side, something like 10%. Trying to rest in that, even if things take a long time to get to surgery, it's not the end of the world. This is, of course, assuming it's not already spread.

    You know what's hard too? The poor appetite. Yikes. Getting breakfast down is increasingly hard. I'm not very big so weight loss really isn't the best thing. Bedtime snack is the only time I really feel like eating.

  • LittleBungle
    LittleBungle Member Posts: 4
    edited May 2021

    Hi gb

    Sorry for this c**p that you are going through again. Keeping everything crossed for good results for your scans. I am waiting for a bone scan date right now as have had some fairly consistent pain symptoms and after speaking with breast nurse today my surgeon wants a bone scan as those pains might indicate something nasty. Waiting for scans and their results is hell. Looking forward to getting past this now. Hope you are getting some sleep, eating a bit and that there are good moments. Hu

  • LittleBungle
    LittleBungle Member Posts: 4
    edited May 2021

    Hi Hahlyn

    How are you bearing up? I’m new here so not 100% with the shorthands- are you having chemo again? Really sorry you have this stupid disease. I can absolutely imagine it is rough emotionally dealing with it again. I’ve degenerated into a mess with just the mention of another bone scan. Sending 🤗

  • hahlyn
    hahlyn Member Posts: 128
    edited May 2021

    Hey LittleBungle

    I'm holding up okay. Yes doing chemo again. If i am being honest this is my 3rd time. After my lumpectomy (the first go around in 2016) they found another tumor hiding that caused me to have another round of chemo in 2017 that was AC 4 rounds. Now this time 2021 it's TC 4 rounds. In total since my original diagnosis I've now had TCHP 2016 AC 2017 2021 TC 8 chemo treatments unbelievable!

    #3 TC is next week. This week I call my good week next week starts the steroids etc.. so I try and enjoy this week as much as I can.

    It's hard but try and stay positive it's what helps you get through. Take one day at a time and look at the boards they helped me tremendously as I had nobody else who had gone through this. This is a place where we can share and learn from each other. Hang in there!

    Hahlyn


  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    Anyone else feel like their face is totally going to be smashed up in the bone scan machine, lol? I was smart to close my eyes this time, but still had to peek at it.

  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    soo, IV sticks. I just got home from CT scan, and it took them 5 tries and interventional radiology (who dug on two veins). I'm sore, swollen and traumatized from that.

    I just really don't want to deal with this stuff. They kept blaming me too.

    I'm afraid what the next IV will be like. I was hydrated too.

  • LivinLife
    LivinLife Member Posts: 301
    edited May 2021

    Difficult experience gb! I hear your frustration with all of this! Doesn't help when staff get frustrated and blaming - they are supposed to help... Hopefully you get results soon so you at least know what you're dealing with. Limbo is the worst while the mind wanders and stress increases with unknowns..... Gentle hugs and support sent your way!

  • Carlsoda
    Carlsoda Member Posts: 120
    edited May 2021

    Hi GB - sorry about the IV! It can be traumatic!!

    I am getting a bone scan next week - what’s it like? I was told to arrive 3 hours ahead of time for an injection. Then I get to run to onco office for more blood work (liver enzymes elevated) then back for the scan. Crazy days - just like last time!

    At least now you have a weekend to relax and just let everything go!

  • lillyishere
    lillyishere Member Posts: 769
    edited May 2021

    I'm sorry about the recurrence gb! It is everybody's nightmare. I hope in 30 years or so you will write about this. Nurses do have a hard time finding my veins too and I am not scared of scans as much as injections. The last time, a couple of months ago, for an MRI, I had nurses calling other nurses to put the contrast in my vein, and it took them longer to find the vein than MRI itself. I learned one thing if the nurse can put hot towels on the arm, really hot, the vein starts showing up and it will be easier to pinch it. Good luck!

  • sunshinegal
    sunshinegal Member Posts: 67
    edited May 2021

    So I'm not the only one with tricky veins?! I've had 5 sets of "jabs" in the last two months...two IV's, one blood draw, 2 contrast injections... and in 4 out of 5 of them they blew a vein, or two, or three. Ugh!

    OP, I feel you; I was where you are two months ago. I was diagnosed with a recurrence 10 years after pure DCIS and MX, when I had a 1-2% chance of that happening. Just my luck!

    The waiting on scans is agonizing and it's nearly impossible not to worry about the what-if's. I did read one thing somewhere on this site that helped: "Don't rehearse a tragedy," the idea being if you worry and dwell on the worst case scenario, then if it happens you have lived through it twice. If it doesn't happen, you needlessly "lived" through it via worrying.

    I can't say that it eliminated all of my anxiety but it did help some.

    And if it helps at all, it was 8 weeks from my dx to my lumpectomy and my surgeon (at an NCI designated cancer center) said up to 12 weeks would have been OK.

    Sending hugs!

  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    carlsoda--the bone scan isn't bad. In my experience it's a smaller needle like a blood draw. Have to drink a lot of water over the next three hours and then the scan. I recommend keeping your eyes closed when the machine gets close to your face. I've had two of these and the second one was easier because I remembered to shut my eyes!! That part doesn't last long though.


  • hahlyn
    hahlyn Member Posts: 128
    edited May 2021

    Hello

    I have tricky veins too...my nurses had to order some numbing medication after several tries. She told me anytime you have to get stuck for a scan etc...to request the numbing spray. I will say after that experience my arm was bruised for a about month. It was brutal...

  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    Hi all, just to update all of you who have been so kind to reply....

    My staging scans were clear, so I was able to schedule surgery. Will be having a mastectomy the second week of june, so I'm trying to get everything in order to leave work for awhile.

    I had been using estrogen cream for really really bad vaginal atrophy, for a couple of months, and reached out to the prescribing physician who recommended I not use that anymore, because of recurrence, even though the risk is low. I had a feeling that would happen. Well, somewhat normal body parts were nice when they lasted.....<<crying inside>>

    At least the recurrence happened now and not a year from now, when I would have always wondered if it was from the cream. I figure a 1.3 cm tumor has been growing for awhile, so my quality of life choices didn't cause it...

  • 2019whatayear
    2019whatayear Member Posts: 463
    edited May 2021

    very happy to hear your scans were clear!


    They have to take blood out of my wrist or hand which hurts like a son of a gun.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited May 2021

    gb, so glad that your scans were clear!

    Hope the surgery goes smoothly and the only surprises are good ones!


  • LivinLife
    LivinLife Member Posts: 301
    edited May 2021

    Good news on clear scans! You'll have surgery prep to focus on now... Take good care and certainly update us after surgery if we're not hearing from you along the way..... Best with surgery!

  • gb2115
    gb2115 Member Posts: 551
    edited May 2021

    Thanks!!! Nervous about the pre-op testing. I just don't want anything else done to me. I hope nothing in there delays my surgery.

  • Carlsoda
    Carlsoda Member Posts: 120
    edited May 2021

    @gb2115 - so glad the scans came back good! That step is done! Problem with this is the steps never seem to end 🤣

    I had my bone scan yesterday and liver enzyme blood draw. It was high so she was checking it again. Two pokes in one day! Chemo starts next week - not sure what to expect but a lot of anti nausea prescriptions have been sent to my pharmacy.

    Hope you can relax over the weekend and just try to have some fun!