Stage IV and now worried!

Options
bigredbear
bigredbear Member Posts: 16
edited November 2014 in Male Breast Cancer

Hello I am Bryan . In Nov. 2009 I was diganosed with stage 4 male breast cancer. my cancer spread to my bone and i had 24 rounds of chemo ACT program. And 40 rounds of radaition. Now 2 years later it has shown up on my annual PET scan. In my testicle and my liver. Its been 6 weeks since my pet scan showing this and I have had 2 ct scans in the last 4 weeks but still have not been told what course of action is next, I am growing very worried about this and losing sleep over it. Has anyone had the same results? Any help would be awesome Thanks Bryan

· Share on FacebookShare on Twitter
«1

Comments

  • blondiex46
    blondiex46 Member Posts: 5,712
    edited January 2013

    Bryan I can't help but wanted to let you know that I am sorry this is happening and keep asking, pushing, 6 weeks and no treatment or answers is really not helpful and worrysome to you....who have you contacted?

    Sandy 

    · Share on FacebookShare on Twitter
  • steelrose
    steelrose Member Posts: 3,798
    edited January 2013

    Bryan,



    You absolutely must push for immediate acfion! If your doctor isn't responding quickly, find another doctor. No treatment for this long at Stage IV is unacceptable. I worry that the guys get overlooked because this is female dominated disease. Please demand answers.



    Also, I was diagnosed at Stage IV, with mets to bones and liver, and I am now in remission. It can and does happen with the right treatment. Please keep us updated!



    All the best,



    Rose.

    · Share on FacebookShare on Twitter
  • Angelfalls
    Angelfalls Member Posts: 849
    edited January 2013

    Bryan, I'm sorry to hear that you have progression and still don't know what your tx plan will be. Your team is probably trying to gather as much information as possible about exactly what you're dealing with before finalising your plan. But it's really important that they keep you informed of what's happening and why you haven't started tx yet.



    When I came out of remission and NED left me, I didn't actually start a new tx for over 3 months while we explored all the available options, so I know just how scary the wait can be. But I trust my team and know they were exploring every avenue to get the best outcome possible for me, because they let me know exactly what was going on every step of the way. Give your onc a call to try and find out what you're waiting for and if you aren't happy with the answer, it may be time to get a new onc.



    Fingers crossed you'll get a good plan and soon. Let us know how you get on.

    · Share on FacebookShare on Twitter
  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited January 2013

    Bryan .. just wanted you to know I'm thinking of you.  I hope you hear from your team of doctors ASAP.  The waiting is the worst.

    Let us know as soon as you hear something.

    Sending you all the best,

    Bren

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited January 2013

    Dear Bryan, 

    We hope you hear as soon as possible from your doctors.  The BCO community is here to support you.  Please keep us posted with news of your treatment plan. 

    (((The Mods)))

    · Share on FacebookShare on Twitter
  • bigredbear
    bigredbear Member Posts: 16
    edited January 2013

    I would see new doctors only insurance it not a option for me I am self pay and round 1 has just about ruined me. The chemo was soooo expensive..lol The radaition was only 40,000. They cut me a deal. I have spoken with MD anderson and also not an option. I feel like I am in the best hands possible  with the 2 different sets of doctors I see. One was my chemo doctor at Texas oncolgy and the other doctors are at the cancer center of southeast texas. All the doctors from the cancer center are from MD Anderson. Dr kong was there for 20 years. My chemo doctor is Robert Birdwell. He was named as 1 of the 5 so called super doctors in Nov. 2009 by Texas Monthly mag.

    There is only 1 other male breast cancer patient around here hes 78 years old. I am a vol. for the Cancer center of se texas. I help raise money for the patients of the cancer center. I also help and go to group support meetings for the Julie Rogers Gift of life program Cancer has changed my life in a good way. I was told today that there was no change in my latest ct scan and nothing has been decided yet. bummer... That just blows me away. My pet scan showed it, the suv were 4.8 everything points to cancer but still no action. maybe I am just rushing things. Dang I hate CANCER.. Have a great day ALL will post when I learn more, Thanks for all the support it really helps .. Bryan Jackson

    · Share on FacebookShare on Twitter
  • blondiex46
    blondiex46 Member Posts: 5,712
    edited January 2013

    Bryan can I ask how old you are, and isn't there a patient advocate to help you get insurance, are you self employed is that why your insurance is like that?

    · Share on FacebookShare on Twitter
  • marywh
    marywh Member Posts: 2,280
    edited January 2013

    Dont have any great words of wisdom, only that I hope you"ll get the answers you need soon. Stick around and Im sure you can get some help from these folks on these threads. They are my lifeline.

    · Share on FacebookShare on Twitter
  • steelrose
    steelrose Member Posts: 3,798
    edited January 2013

    It does sound like you're in great hands, Bryan. Now to get them to move a bit faster... grrrrrr...

    Sounds like you have a great attitude too! Please do keep us updated, and I hope that whatever treatment plan they set you up with will knock that nasty cancer out!



    Rose.

    · Share on FacebookShare on Twitter
  • wkNprogress
    wkNprogress Member Posts: 11
    edited January 2013

    Hey, there--I'm from Texas, too, and I'm wondering if you qualify for Texas High Risk Pool insurance?  I know you have to be turned down by two or three other companies, or maybe even your cancer dx will automatically qualify you for it.  It's kind of expensive, but nothing compared to the bills you must be receiving.  My mother was on it for a while with her MS, and it really is good insurance.  I think hers was around $750 per month.

    I do recall the anxiety of the first few weeks after learning of my mets.  Scary stuff, and I feel deeply for you.  Since then, I've learned there is actually a such thing as Stage IV no evidence of disease...and, with my liver and bone tumors shrinking with every scan... I'm on my way!  Seriously, not even Stage IV has to be considered a death sentence!!  You'll find your new normal soon.

    Hang in there, and keep advocating for yourself--don't feel bad that you want answers!!  The squeaky wheel gets the grease! 

    · Share on FacebookShare on Twitter
  • marywh
    marywh Member Posts: 2,280
    edited January 2013

    I dont know how the different federal risk pools are in each state, but thats what I have in N.C. I pay 340 a month, with a 4500 detuctable, but considering the alternative of no insurance, I take it as a blessing to have that. All I needed was drs. letter stating what type of cancer I have and they accepted me within a couple of weeks. I have had some problems with them covering some treatments, but all in all its been pretty good.

    · Share on FacebookShare on Twitter
  • bigredbear
    bigredbear Member Posts: 16
    edited January 2013

    Every where I have turned for help I was told no... you make too much money and ect. Was told by a few agencys that if I quit my job then I could get help. I said no to them I will keep my job as long as possible. Its Ok there are more  people out there that need the help more then me ..UPDATE  I will be seeing the doctors next Tuesday and will  be given a game plan then. Cannot wait till Tuesday. :o)     Bryan

    · Share on FacebookShare on Twitter
  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited January 2013

    The risk pool has nothing to do with how much money you make. It is for people who have preexisting conditions and are otherwise uninsurable. You should qualify.

    · Share on FacebookShare on Twitter
  • TectonicShift
    TectonicShift Member Posts: 752
    edited January 2013

    Bryan,

    I am thinking of you. What is your situation with your oncologist? Do you have regular checkups? Who gave you the scan results that showed liver and testicle? When is your next appointment?

    You should have a plan for treatment now. If you don't, switch oncologists. If you possibly can, go to MD Anderson. It's one of the best cancer hospitals in the world.

    · Share on FacebookShare on Twitter
  • blondiex46
    blondiex46 Member Posts: 5,712
    edited January 2013

    Next Tuesday, really, they don't have anything before that....sorry insensitive on their part I think....now you are playing the waiting game, which is so not fun....thinking about you...

    Sandy

    · Share on FacebookShare on Twitter
  • blondiex46
    blondiex46 Member Posts: 5,712
    edited January 2013

    Bryan where r u?

    · Share on FacebookShare on Twitter
  • mandymoo
    mandymoo Member Posts: 815
    edited January 2013

    Bryan, good luck. I hope you get some answers from your onc quick smart. My thoughts are with you Smile.

    · Share on FacebookShare on Twitter
  • bigredbear
    bigredbear Member Posts: 16
    edited February 2013

    Went to see the doctors on tuesday. we compared 1 pet scan and 3 cat scans side by side . The growth has not grown in 3 months still the same size . I am told it could not be in a worst spot. top inside of my liver against the diapharm. we are doing ct scans every 30  days and they are doing it in house and not charging me anything..  Told we are just going to watch it.. :(  wish it would grow so I could have it removed and move on with my battle.. Not feeling like having to worry about cancer being back in my body.. This truly sucks.

    · Share on FacebookShare on Twitter
  • marywh
    marywh Member Posts: 2,280
    edited February 2013

    Glad to hear it hasnt grown any. I know the watching and waiting game is frustrating, it seems we with stage 4 spend our lives doing just that. wish I had some great words of wisdom for you to make things easier, are they going to do anything else? or just scans?

    · Share on FacebookShare on Twitter
  • blondiex46
    blondiex46 Member Posts: 5,712
    edited February 2013

    it does suck Bryan...sorry!!!

    Sandy

    · Share on FacebookShare on Twitter
  • steelrose
    steelrose Member Posts: 3,798
    edited February 2013

    Ugh. Sorry for this news, Bryan. But it is good that it hasn't grown. In my case, they wouldn't do anything about my liver met until it started to shrink. I had a large met that was reduced by half with chemo, then I had a liver ablation. Are you on any treatment? There are options, so I would certainly get other opinions if you're uncomfortable with what's going on. I had a very aggressive team, and I believe I'm alive because of that.

    Please continue to let us know how you are!

    Rose.

      

    · Share on FacebookShare on Twitter
  • itsjustme10
    itsjustme10 Member Posts: 796
    edited February 2013

    I don't know if this will help you, but each state has a special Medicaid program for women diagnosed with breast or cervical cancer.  They will allow you to have $22K of income and still be eligible (none of my business what your income is, just telling you their limits)/

    Your biggest fight is it applies to "women" diagnosed..you have a hell of a "this is discriminatory" argument there, because if you meet all the other criteria, they cannot discriminate on the basis of sex...but if it could save you hundreds of thousands of dollars, if they decide you need chemo, it might be worth calling your local legislator, and seeing what can be done for you.

    · Share on FacebookShare on Twitter
  • bigredbear
    bigredbear Member Posts: 16
    edited March 2013

    Well I have an update, My cancer on my liver has doubled in size in the last 3 weeks I will have yet another scan on monday in houston then will have the game plan given to me was told surgery to remove it then chemo and radaition again after I heal from the surgery. I am ready for this and will beat this beast down yet again!!!  I have too much to do in the next few years and this crud is in my way .!!!  Will post in 1 week to tell what They tell me God Bless you all and thatks for all the support you Peeps Rock!! Bryan

    · Share on FacebookShare on Twitter
  • steelrose
    steelrose Member Posts: 3,798
    edited March 2013

    Bryan! That sucks! I am so sorry to read this news, BUT the fact that you're a candidate for surgery is very excellent news indeed! It sounds like a liver resection? I had a liver ablation. The resection is a much bigger deal, but you sound strong and determined. That's the attitude to have going in! Stay strong, stay positive and focused. I was diagnosed at Stage IV with mets to liver/spine/sternum, and I've been in remission since Jan. 2011. It can happen!



    Please keep us updated. Wishing you the very best...



    Rose.



    · Share on FacebookShare on Twitter
  • bigredbear
    bigredbear Member Posts: 16
    edited April 2013

    Hello all hope everyone is doing well. I will be undergoing a cat scan guided biospy on wednesday. My tumor is larger and we can now tell its on the diaphram not the liver but located above it . I also now have 3 spots on my vertebrae in the middle of my back. The main focus right now is the bigger one on my  diaphram. I am glad this day is here. Too many sleepless nites.  Smile  I am taking the gloves off and fixin to kick some cancer azz again.Cool I will post all the results I find out , should know by thursday evening. Maybe friday morning. Thanks Bryan

    · Share on FacebookShare on Twitter
  • steelrose
    steelrose Member Posts: 3,798
    edited April 2013

    Bryan,



    I take that as good news that it's not in the liver! Good luck this week, and please continue to update.



    Rose.

    · Share on FacebookShare on Twitter
  • bigredbear
    bigredbear Member Posts: 16
    edited April 2013

    Well the biospy was not good results the needle was 8th of an inch short of reaching my cancer on my diaphgram, he tried any way and got lung tissue instead. Which filled my rt lung with blood and it was a terrible time for all.. lol  Now they have done another ct scan and said they are going after my 8th thorasic vertebrae. They said its in the bone  and think it will be  no problem to get at. Seems I heard this before.  :o). Will update later. Bryan

    · Share on FacebookShare on Twitter
  • gonegirl
    gonegirl Member Posts: 1,871
    edited April 2013

    Ah, crap. I am so, so sorry. My heart goes out to you.

    · Share on FacebookShare on Twitter
  • marywh
    marywh Member Posts: 2,280
    edited April 2013

    Oh Bryan, Im so sorry. Hope you are doing ok.

    · Share on FacebookShare on Twitter
  • steelrose
    steelrose Member Posts: 3,798
    edited April 2013

    Bryan,



    That biospy sounds horrific! Noooo! The spine should be easier... I have experience with that at T4/5. Hang tough! You're a trouper, I can tell, but remember we're here if you need to cry too:) This crap could make anyone cry!



    The guys here are mostly quiet, but I know they read! Who knows who you may be helping by just telling your story?



    Thinking of you!



    Rose.

    · Share on FacebookShare on Twitter

Categories