Calling all TNs

Options
1…339340342344345…1198

Comments

  • Luah
    Luah Member Posts: 1,541
    edited November 2011

    Just checking in after 5 days out west - skiing and visiting my son. A lovely break.  

    Inmate: so sorry to hear about the recurrence. I get why you're wondering about "what's left for stage 4?" but it seems to me that the best way to avoid that is to stop the BC in its tracks. Don't even go there. It sounds like your oncs want to try new cocktails because the previous options presumably left some remaining cancer cells that continued to grow. Chemo's a bit of a crapshoot, but let's hope this one delivers the jackpot. Glad to hear you're feeling and looking good - a good omen perhaps.

    Titan - what a nuisance with your foot, hope it feels better soon. I guess your running's on hold.  

    OBXK - is it the side of your surgery? I can't provide any insight, what you're saying makes some sense (and I guess it's better than LE, right?). Maybe a PT could help. 

    MBJ - hope you get some relief for your shoulder soon.

    Healing vibes and hopeful thoughts to anyone else experiencing aches and pains. With BC, our minds naturally go to the dark place, which just sucks doesn't it?

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited November 2011

    Teka-thank you! That is what I need to concentrate on, being up and about at home for the week end! I am really nervous about bmx tomorrow! I need to get stuff done but keep coming here to read!

    Has anybody had tomo radiation? Met with RO that said I may be a candidate for it the only thing is I have to drive a bit further but I will if it is better for me. He gave me 3 choices, a hospital by my house or the cancer center where I usually go or the furthest place that has tomo. Sad thing is that if I go for the tomo he won't be my RO and I really like him! He also said that if no cancer is found at surgery that I have the choice to not do radiation, and just do the wait and see approach. I asked what he advised and his answer was "I hate cancer. I would do the radiation." I like that answer! I wonder if my insurance covers tomo, I think I have heard it mentioned that someone was denied coverage for it. I know all insurance is different but I better check.....

    Edited to say radiation, not chemo.

    · Share on FacebookShare on Twitter
  • inmate4232010
    inmate4232010 Member Posts: 310
    edited November 2011

    thanks Teka and Luah......you are both right.  there are a lot of options.  I just hate that cancer makes you both strong and somewhat of a whiner at the same time.  Thanks so much for your support.  I continue to be so appreciative of everyone on this board!

    · Share on FacebookShare on Twitter
  • inmate4232010
    inmate4232010 Member Posts: 310
    edited November 2011

    Bak94......I had tomo therapy and would be happy to chat with you in detail about it.  I am also in Seattle.  Can I pm you?

    · Share on FacebookShare on Twitter
  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    inmate4232010,

    You're strong and right to seek information about BC treatments.   Never a whiner :o)

    · Share on FacebookShare on Twitter
  • OBXK
    OBXK Member Posts: 791
    edited November 2011

    Luah - my autocorrect, wanted you to be Lush ;)

    Yes - much better than LE! It is on the side that I had the total mx. Just finished PT for broken kneecap last Friday. I've added some hand weights to my daily routine, which includes pilates - which I love! Big freaking platform, but who uses the formal living room anymore?

    So glad you enjoyed the time with your son.



    · Share on FacebookShare on Twitter
  • inmate4232010
    inmate4232010 Member Posts: 310
    edited November 2011

    Bak94.....I went to tomo therapy at Swedish in Ballard.  Dr Landis is wonderful as well as all 3 of the technicians.  I started at Swedish, first hill, for measurements then on to Highline to start standard radiation treatment for the first week then on to tomo in Ballard.  The tomo therapy was not open yet so they started me first with standard treatment because they didn't want to wait that long (I was the first breast cancer patient at the new facility).  Since I had positive internal mammary nodes that still showed positive after chemo I had to add a breathing tube to the process to keep my heart and lungs from getting radiated. Moving to tomo was wonderful because I didn't have to do the breathing tube any more and I experienced very little burning.  It wouldn't hurt to have your RO office check on the insurance issue with tomo.  You can also call see if your insurance company has an advocate department that can help you fish out any potential issues with them and future treatment plans.  

    I would be more than happy to chat with you more.  

    I understand the pre-surgery nerves and wish I could offer advice to alleviate them.  The surgery is actually physically not bad.  Not really painful and I was home in less than 24 hours.  The drains proved to be the biggest hassle but very manageable.  I hope I didn't go into it too much. You will do great!  

    p.s.  here is a link to an article on the new tomo opening.  BTW that's me in the pic :)

    http://www.myballard.com/2011/02/04/ballard-home-to-state-of-the-art-cancer-treatment

    ...don't know why the link didn't work but that is the site. 

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited November 2011

    Inmate -feel free to pm me anytime. Ballard is where I would be going. Was insurance an issue?

    Thanks for all your info!

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited November 2011

    Innmate-I reread your post, yes I will check with insurance. What was the breathing tube like? Did you have to lay there with a tube down your throat? I don't think I could do that, my gag reflex is very strong! It would be worth the extra miles to go to Ballard to not have that! I live in the south end, Renton, Maple Valley area.

    I have positive im nodes, but they appear to be gone after chemo. Did radiation get rid of yours? I am "technically" stage 4, as one of my im nodes spread a bit further under the breast bone (best I can explain it) or is possibly a mediastinal node, but more in the im area. It confuses me, all I know is it is inoperable and chemo has seemed to wipe it out. MO and BS say it presents more like stage 3 and RO said I could choose which it is so I pick stage 3 since that is the treatment plan! We sound like we have similiar cases!

    · Share on FacebookShare on Twitter
  • inmate4232010
    inmate4232010 Member Posts: 310
    edited November 2011

    Bak94...insurance was not an issue for me.  I think I had to pay a bit more out of pocket, but I did not get refused payment because of Tomo.  Radiation did get rid of the im positive nodes but it came back in my left breast.  

    It does sound like we have similar cases.  I would love to chat with you.  I am headed out to help a friend with an event but will be available via phone.  I will pm you my cell #.

    · Share on FacebookShare on Twitter
  • inmate4232010
    inmate4232010 Member Posts: 310
    edited November 2011

    Bak94...running out of time so here is my number 206.229.3138........sending you good thoughts for tomorrow.  Call me anytime!

    · Share on FacebookShare on Twitter
  • TifJ
    TifJ Member Posts: 1,568
    edited November 2011

    Bak- Sending good vibes for tomorrow!

    · Share on FacebookShare on Twitter
  • swiftbird
    swiftbird Member Posts: 177
    edited November 2011

    ksmatthews, that 'feeling' slowly comes back. be patient. I am just happy now to be able to be at a point to get to that point... hummadaa-hummadaa lol ;D

    titan, I think you're absolutely right.  My hubby I think so respected what my body had been through, he was incredibly supportive and loving and, for lack of a better word, so cudd'ly... we had a fantastic weekend away this weekend and, ahem, got back to 'normal'... woohoo!!   

    · Share on FacebookShare on Twitter
  • swiftbird
    swiftbird Member Posts: 177
    edited November 2011

    can you believe what we talk about on this forum? LOL thank goodness we have this.  I just had a very close friend of a very close friend, get diagnosed and is in recovery from surgery right now in SF - she has a 6 month year old baby.  I advised her, like our oncs, to stay off internet, except for this site... because this has been a godsend for me throughout this insane ordeal. Thank you all, again and again, for being there... !!

    · Share on FacebookShare on Twitter
  • Titan
    Titan Member Posts: 2,956
    edited November 2011

    Sounds like we are all doing it..ha ha...except for the ones in active treatment..and I can tell you that sex was the LAST thing on my mind during that time..I don't think we did it at all and if we did I certainly don't remember it.

    My foot is much better..went walking with the DH tonight..just to get some fresh air and ended up jogging 2 miles...it felt better to jog than to walk..weird.I think it was from shoes I wore shopping to the mall and then out with my DH on black friday...I need to wear my stilettos this weekend to a Christmas party so I need to get better NOW.

    Hugs to Bak and Inmate!..let's get this treatment over soon!

    Swiftbird..your friend is lucky to have a friend like you...

    And Heidi..I was just waiting for you to post a cartoon...good stuff

    · Share on FacebookShare on Twitter
  • Survivor2Be
    Survivor2Be Member Posts: 109
    edited November 2011

    Inmate:

    Round 1 with BC: stage 1 (chemo, BMX, radiation)

    Round 2: recurrence in the breast.  Nobody really told me a stage, they just said it was considered a "recurrence" because a lump came back in the same breast, right along the surgical line, while I was doing radiation).  Treatment plan was surgery, continued radiation with additional boost doses and then followed by chemo.  Yes, the chemo they advised to me was "stage IV" chemo, but that is because you are moving into second and third line drugs.  Why would they use the same drugs as before, since those didn't take care of all those pesky little cancer zombies running around your body.  (that's how I explain cancer to my kids: zombies and all my treatments are "zombie killers"!)

    Round 3: metastasis to brain.  Now they call me Stage IV.  This was diagnosed before I even started chemo from Round 2.  But that's okay, I still have me as the winner of the fight! 

    · Share on FacebookShare on Twitter
  • kad22
    kad22 Member Posts: 191
    edited November 2011

    Has anyone had a lump accur in the breast on the surgical line that was not the one that had cancer in the first place and has a prothesis? I am really scared just found a lump the size of a marble? I don't want to call my onc. because I am scared - really don't want to go through chemo or anything again. What does scar tissue feel like - could this be scar tissue?

    thanks,

    Kelli

    · Share on FacebookShare on Twitter
  • inmate4232010
    inmate4232010 Member Posts: 310
    edited November 2011

    Survivor.....that took my breath away.  I guess I was feeling like I was alone in the speed at which these zombies are moving.  In a way I am relieved but at the same time so sad to know that I stand with such a strong group of women.  Too bad we stand against such a little *****r.  (sorry for the excessive use of asterisk)  Thank you for sharing your path with me.  

    kad22........you should never be afraid to talk to your Dr about any lump, feeling or pain.  It is better to know than to wonder.  We have to wait so much already for test results, we certainly don't need to add worry about what it might be.  We all just put our big shoes on and walk the path that has ben chosen for us.  Just think, it might be nothing and the relief that will give you.  

    Teka.......thanks!

    · Share on FacebookShare on Twitter
  • ksmatthews
    ksmatthews Member Posts: 812
    edited November 2011

    I can feel a small lump along my surgical line.  I only had a lumpectomy.  I had my RO to check it during radiation and he told me it was scar tissue.  Last week i saw my MO and had her to feel it, it is very tender to the touch and she also said scar tissue.  I still worry about it.  

    I had a ct scan done on the 15th and all was clear.  Does the ct scan do our breast?  I go back to the RO today and I am going to ask him again about it. It is not growing, just sore and my MO said with it being tender was another sign that it is just scar tissue.

    I am sorry to those of you with reoccurances and I dont know alot about the chemo cocktails, i have never really took the time to study them, but just do what you think is best for you and your circumstance.

    Positive vibes to us all! 

    · Share on FacebookShare on Twitter
  • Teka
    Teka Member Posts: 10,052
    edited February 2012

    Ksmatthews,

    Some of my scar tissue feels like a sore lump.   I stretch but don't poke at scar tissue.Wink

    · Share on FacebookShare on Twitter
  • mccrimmon324
    mccrimmon324 Member Posts: 1,076
    edited November 2011

    Ksmatthews,

    I noticed some scar tissue during chemo, my Onc checked it over and said that's all it was.  If I'm not wearing a bra ( scar is upper across breast ) I can feel it pull a bit, it feels weirdly uncomfortable sometimes and a little sore to the touch. 

    · Share on FacebookShare on Twitter
  • riley702
    riley702 Member Posts: 1,600
    edited December 2011
    I had a mx, not a lumpectomy, so don't know if the feelings are similar, but I had a bb-sized lump on my scar line that my BS  did a quick US on and said it was just fluid trapped in the scar tissue. It wasn't sore until I was constantly checking it, though. Embarassed It's easy enough to check, apparently.
    · Share on FacebookShare on Twitter
  • ksmatthews
    ksmatthews Member Posts: 812
    edited December 2011

    thank you so much girls, I guess it it just so hard not to worry about those things..none of my dr's seem to be worried and have all said scar tissue so I trust them.  If it feels like it is getting larger I will def. request and us.

    · Share on FacebookShare on Twitter
  • bak94
    bak94 Member Posts: 1,846
    edited December 2011

    Had my bmx today, well technically yeasterday. Feeling pretty good and so far 2 nodes that were taken look cancer free as the breast too. I hope final pathology backs this up!

    · Share on FacebookShare on Twitter
  • ksmatthews
    ksmatthews Member Posts: 812
    edited December 2011

    bak94 congrats!

    · Share on FacebookShare on Twitter
  • NavyMom
    NavyMom Member Posts: 1,099
    edited December 2011

    bak94-glad that BMX is done  fingers crossed for good path report.

    Anyone hear from LJ? 

    Navy

    · Share on FacebookShare on Twitter
  • Lovelyface
    Lovelyface Member Posts: 674
    edited December 2011

    Dear ksmatthews - I have the same type of lump along the surgical line that you mention.  I wrote many posts here a while back asking people what they thought and had my surgeon, nurse practiontioner, Oncologist, Rad. Oncologist, just about everyone touch it and they said it was just a scar.  Not to mention, I even had an ultra sound done which came out okay, they couldn't see anything. Even though many of them said that it was a longer shaped scar tissue, I myself, feel a pointy kind of lump.  I can't even tell if it is growing or not.  It is tender to the touch and sometimes, it is really very tender.  It is definitely there all the time.  I had a lumpectomy by the way, as well.  In any case, I am now waiting for my usual 6 monthly MRI, which is due in Jan/Feb.  After I had seen all these professionals, I just kind of relaxed and just don't care anymore.  What else can I do?  I really don't know how one can handle the news of a recurrence, I feel it is the worst thing ever to have to bear that.  My hats off to all those brave ladies who have had to face that.  You are great!

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2011

    MacFry is ready for Christmas!

    · Share on FacebookShare on Twitter
  • mags20487
    mags20487 Member Posts: 1,591
    edited December 2011

    bak--so glad your surgery is behind you now.  Rest up and follow docs orders and avoid lifting and raising those arms too high.  Hope the path comes back great too!

    Maggie

    · Share on FacebookShare on Twitter
  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited December 2011

    I was diagnosed with TN bc.  I found the lump in the middle of September but all the tests have dragged on for so long and I am so frustrated that it is taking so long.  I finally had an ultrasound biopsy on 10/27 and it was said to be under 1 cm.   I had a breast MRI on 11/21 and it showed it to be 1.6 cm and some lymph nodes were shown to be enlarged.   I am so frightened that it is growing so fast and it has been so long since I found the lump and that it might be spreading while the doctors are dragging all of these tests out.  It seemed to "pop up" overnight.  Finally, I asked to meet with an oncologist to get his opinion and BAM!   He called the surgeon and said based on my MRI, to get the surgery scheduled ASAP.   I am having surgery next week on 12/7, a lumpectomy.  Then I will start dose dense chemo 4-6 weeks later, then radiation.   I am so glad to find this group as I am having a hard time coping.  The long time I have been waiting for treatment is the worst.   I am having a CT/PET scan tomorrow morning to look at the rest of my body.  My brain MRI was clear.   I am praying for a good path report after my surgery next week.   I have been reading a lot of information but so glad to connect with others fighting this.

    · Share on FacebookShare on Twitter

Categories