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Starting chemo February 2020

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Comments

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    I'm getting my port put on on the 13th.....and first chemo infusion is the 14th.


    32 years old, male, with invasive ductal carcinoma. Grade 2, EP+, Her2- ....Stage 2b


    Tumor was 5cm and 1/6 lymphnodes was positive.


    I'm fine with the side effects (balding, fingernails turning purple, tingling, etc.) EXCEPT nobody can give me a straight answer on the fertility.....I know chemo attacks fast dividing cells.....which sperm reproduction is....so not sure what to expect. I don't have kids....nor do I see myself having any....but I don't want that option robbed from me.

  • scatteredenergy
    scatteredenergy Member Posts: 320
    edited February 2020

    voncloft, welcome to our group. Have you called anyone that deals with women's fertility before chemo? I have zero idea if they can preserve sperm but in assuming yes because there are sperm banks. Or maybe male fertility is not affected like a women's.

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    I have chemo education tomorrow....they are again very vague since most bc is woman based.....I won the backwards lottery on this one.

  • scatteredenergy
    scatteredenergy Member Posts: 320
    edited February 2020

    voncloft, I'm so sorry. Keep fighting or have someone with you to help you fight.

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Welcome, voncloft! That seems really weird that nobody can give you a straight answer about fertility. I wish I could point you to the answer but all I can do is empathize. It sucks when you can’t get the answers you need

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    I have read/heard that "SOME" men will lose the ability to have kids or may take 1-3 years to be fertile again.


    Seriously I wish someone would say yes or no on the answer and not throw it to "hmm maybe?" ..... frustrating ....but I will say cancer deserves a big middle finger.

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Can I please complain? I tried to have my first infusion on Monday but had to stop because I had a reaction to the taxotere. The doctor wanted to try again with a different drug on Friday (2/7) but we needed the insurance to approve it.

    I talked to someone in the doctor’s office on Tuesday and she said that she checked that morning and the approval was pending. I called again today at 3:00 and left a message. Nobody called back. A couple hours later I called the insurance to see what is going on. They said they received the request yesterday for treatment from 2/7/20 - 6/7/20. They also said that it's not marked urgent so they have 30 days to approve it. Doctor previously told me that chemo should start within eight weeks of surgery (today).

    What the heck?! I’m hearing different things from the doctor’s office and the insurance company and I have no idea when my chemo will finally start. I need a plan, people!


  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    vomcroft- I hear ya! The uncertainty is the worst.

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    TexasMama


    That sounds about right....when I first started down this road of cancer - getting my surgery was a nightmare.


    It started in December. I had to do 3 tests, genetic, preop, and physical therapy. Once those were cleared I could move onto the next step.....the final test genetic came up normal and I was supposed to have heard "your surgery is x within 24 hours"....of course nobody called.....so I called them.


    I was told Jan 9 of 2020 would be the surgery....no time marked I'd get a call soon to verify....I of course naively believed the doctors office.....waited 3 days...no call....so I called them.....apparently it was never scheduled...I FLIPPED!!!!! I was seeing red. So I tell my mother a retired nurse this - she called on my behalf (this was Christmas eve when I found out the schedule mishap) so on Christmas my mother calls the hospital and we are told that Jan 9th was indeed scheduled....and the nurse oncall yesterday was incompetent (they used nicer words).....and the surgeon would speak to her about her mistake.


    So .... the next day I get a call from the incompetent nurse and she said in a stern voice "I was on vacation and blah blah blah" (my mother said the hospital does not care people will work holidays someone would be there) - someone should have covered for you then. I don't care that you were yelled at honey, my life is on the line here.


    Once I had my mastectomy the hospital was supposed to not close me up UNTIL the tissue was given to the lab and verified they had clean margins....nope they just went ahead and closed me up and sent the tissue to pathology.


    So far I am not impressed with my team. Yes they got clean margins, my PET scan last week verified I had no new metastasizes. My oncologist seems more trustworthy than my surgeon honestly.



  • scatteredenergy
    scatteredenergy Member Posts: 320
    edited February 2020

    TexasMama, that happened when my breast surgeon ordered the PET scan. It was frustrating.

  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    Voncloft - I'm sorry you've had such a rough time of it. The lack of planning and mistkaes on the hospital/surgical team is extremely frustrating and I imagine nerve wracking.

    I wish I could answer your question with some facts about make fertility and Chemo. Unfortunately all I could find were vague answers online.

    From personal experience I know my father had Prostate cancer 40+ years ago and his Chemo made him infertile. I would say that since you're young and may one day want children it would be in your best interest to store some away just to be safe.


    TexasMama - I'm so sorry you're going through this. The uncertainty and waiting is always the worst part. Sadly, I feel that insurance agencies just don't care, for them it's red tape and formalities, for us it's our LIVES!

    I'm starting with chemo then going to surgery. I read that surgery is supposed to happen 3-4 weeks after end of Chemo, when I mentioned this to my surgeon he did a little hand wiggle like around there but, not exactly limited to 4 weeks. Like really? Can we get hard figures?! I'd like to have a plan, planning makes me feel like I have some control rather going along for a ride.

    I wish you the best in getting approved to start your treatment soon and hopefully you won't have a reaction to the new drug.

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    Morrigan_2575


    I've considered the sperm banking....frankly I just don't see a benefit to paying $300-500 a year to store my little swimmers on a wymm that "Hey I found the right woman".....I just want a definite answer....I thought my chemo education would declare that today. Unfortunately it did not the nurse just said "That's a good question for your oncologist".....REALLY!! what the hell am I paying you people for?


    *sigh* - I called my oncologist and am awaiting for her to call back to make her squirm. Doctors can definitely say "Smoking is bad for your health don't do it, cancer is high when you do this" - but they can't for the life of them say "Chemo will definitely/won't make you sterile as a man"


    If I go sterile I'm growing to be okay with it....I don't see myself having a wife or family in my life to begin with...I just don't want that option taken away from me. Then again I never wanted cancer to begin with and I can't always get life my way.

  • dysonsphere
    dysonsphere Member Posts: 134
    edited February 2020

    Getting ready to get my Neulasta shot. Hate that I can't have the patch!

    I've only been one day on my first round of AC chemo but so far...

    • Slept most of the afternoon.
    • Went to get my haircut because I could already tell that I was not going to have energy to mess with my long hair.
    • image
    • slept the rest of the evening.
    • So far I have had nausea and went ahead and took Zofran last night. Nothing too terrible. I've still been eating.
  • morrigan2575
    morrigan2575 Member Posts: 805
    edited February 2020

    Just got my Neulasta shot this morning, turns out it's my insurance that didn't OK the patch. Sad

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Thank you for commiserating with me! It's disappointing to hear that so many of us have struggled to get things scheduled. My sister also has the brca2 mutation and has been trying to schedule her prophylactic bmx for a month. Unfortunately, one of the schedulers keeps dropping the ball. Grrrrr!!!

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Cute hair, dysonsphere!!

  • scatteredenergy
    scatteredenergy Member Posts: 320
    edited February 2020

    dysonsphere, you look beautiful. I felt like shit yesterday after my first round. But I think it is emotional because it happened after my fiance left for work. I don't like being alone when I'm sick.

    morrigan_2575, that sucks.

    TexasMama, and that's why I'm on top of not shit. I cant trust others to do their job.

  • mnsusan
    mnsusan Member Posts: 139
    edited February 2020

    voncloft, welcome to the club none of us wanted to join. Please let us know when you find your answers. I remember at my chemo educ they emphasized that women shouldn't plan to conceive during chemo, and men should use barrier contraception but I don't remember anything about "what about when its over." Frustrating for sure.

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    Well...I'm gonna take a risk in fertility.


    $500 or $1000 a year to store depending where it is stored in the US


    I'm out - I may need to just accept the fact I may never be able to be a dad.


    No, I wouldn't adopt to "fix" the issue.

  • scatteredenergy
    scatteredenergy Member Posts: 320
    edited February 2020

    voncloft, insurance wouldn't cover it? And I agree, adopting is not the same. it is special in it's own way but not the same.

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    They might...I'm not sure; and I'm getting drained over this whole process and its just easier to accept "Well....not gonna be a dad" - but if it were they won't until a deductible is met...which is 1k and I just don't want to put that down every year. I'd rather put that 1k away in savings

  • dysonsphere
    dysonsphere Member Posts: 134
    edited February 2020

    Voncloft, sorry that you are having the added issue of infertility to deal with. Honestly, just having to deal with the basics of cancer and then adding the fact that you have been diagnosed at a younger age is so much to deal with. I know it's easy to get overwhelmed. I am a single parent so it was devastating to think about how I would pay for the medical bills, how I would pay for my daily living expenses, but it has all worked out so far. Keeping you in my thoughts and prayers!

  • hray1993
    hray1993 Member Posts: 220
    edited February 2020

    I got my port put in today. Idk how everyone else’s went but mine sucked. It was painful the whole way through. And I was wide awake for the whole thing. So glad it’s over!! image

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    I get mine Thursday.....hope the 'I don't care medicine' hits me hard.

  • scatteredenergy
    scatteredenergy Member Posts: 320
    edited February 2020

    hray1993, well that sucks. They knocked me out. And yours look like it is on your breast instead of above.

  • voncloft
    voncloft Member Posts: 13
    edited February 2020

    Where do they normally put the port sidewise? I had Invasive Ductal Carcinoma on my right side of my chest right behind the nipple.

  • dysonsphere
    dysonsphere Member Posts: 134
    edited February 2020

    hray, I feel you. My port experience was not pleasant but i'm grateful the revision worked and I was able to start my chemo. It does get better. Mine is a little sore but most of the swelling has gone down now, 1 week out.


    voncloft, I had mine placed on the left side since my IDC is on the right side.

  • hray1993
    hray1993 Member Posts: 220
    edited February 2020

    I think the catheter I have is really long possibly. The round part of the port is above that incision. It’s like right above my boob, and then the incision in my neck is where the catheter is. That’s what bothering me the most is my neck. It’s killing me feels like I have a constant crick in my neck and hurt so bad.

    Voncloft, I got the twilight anesthesia which is the I don’t care medicine. They said it would make me not care but I don’t know that it worked because I was wide awake the whole time and it hurt really bad. But I also have an extremely low pain tolerance. I literally just laid there and cried the whole time. Hopefully it goes better for you. And I asked the same question. She said they normally put it on the right so they have a shorter distance to the vein it needs to go in unless there’s a reason for it not to be there. She asked what’s side my tumor Is on

  • hray1993
    hray1993 Member Posts: 220
    edited February 2020

    I tried to draw on there how I THINK it looks like inside to kinda show where it’s placed image

  • texasmama
    texasmama Member Posts: 129
    edited February 2020

    Yikes! I can’t believe you were awake! I was completely out. It’s been a week. Tonight I noticed that it feels like I’ve been stung by a bee.

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