Calling All with Tumors 6 cm +

Options
11011121315

Comments

  • Ossa
    Ossa Member Posts: 919
    edited January 2013

    Yay solarsister..  det var gode nyheter  (that's good news)

  • MMTOMH
    MMTOMH Member Posts: 127
    edited January 2013

    Woohoo, SolarSister! Great news!

  • shianne29
    shianne29 Member Posts: 452
    edited January 2013

    So glad I found this site!!!





    Just got back from MO. I'm so disheartened and barely keeping tears in. My MRI showed cCR but my path report showed a 7 cm tumour. It was just over 6 before chemo!!! How in the name could this tumour not been seen on the MRI??? How could it have grown when every 2 weeks physical measurements showed shrinkage?? How can this be???

    MO says that I need rads again. I've had recon already and it looks FABULOUS only 2 weeks out. I don't want to chance that rads will ruin it.

    Seriously, I was so on top of the world for the past 3 weeks thinking I kicked this beast in the butt and now I feel like my world has crashed on top of me.

    I know rads aren't bad considering everything I've already been through, but I was in the healing and moving forward mode and now that is all put on hold again!!!! ARRRGHHHH!!!!!!! I don't know if I've got enough left to get through this. :-(

    I just want to go and hit my first BS so hard. I want to ruin his life. This is the guy that 3 yrs ago told me the 8mm mass "was fibrocystic and not to worry. We'll watch it closely". Watch it he did!! US, biopsies, and mammos every 3-6 months. When I asked him to take it out when it got to 2.5cm he said "no it would deform my breast and its ok. It would likely disappear after menopause." May he lose his arms in a horrific accident and his crotch be infested with mites!!!!

  • lago
    lago Member Posts: 17,186
    edited January 2013

    shianne29 Sounds like your BS needs a swift groin kick for sure. This does suck but cancer is a time suck. I know you feel you just landed on space 89 in Chutes & Ladders but you will get through this. At times treatment does feel like a game of Chutes & Ladders… or is that Shits & Ladders?

    Have you found a new BS?

  • liv-
    liv- Member Posts: 521
    edited January 2013

    shianne - damn disgusting.. as lago says - initial shock horror, soon you will put the survival cap back on and you will go through the motions sorry, once more.

    mine is different but know exactly how you feel.  i started with a 2 cm lump, nearly 4 months of wasted wrong diagnosis, diagnosed at 4 months with with a 6 cm.. chemo stopped responding on 5th & 6th dose, at mastectomy they took off 10 cm of all tumor.

    we have to take charge of our bc and if need become aggressive and make sure from now on you get what you deserve.  after being miss treated i got 3 more opinions and moved on to another onc that i have so much confidence in and feel he is in my corner.   huge difference mentally for me, its bad but with the right team just having faith in them is a huge plus.

    sorry you have to go through this but you do.  for me the breast can be reconstructed again.  i had just had beautiful silicone implants put in overseas in jan 2012 and was diagnosed in april 2012 and had to have them removed so i know what that feels like but now im just looking forward to reconstruction in the future.

    you can do this.

    we are with you.

    xx

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Shianne... I am so sorry that u r going thru this... I don't understand how all we do can sometimes do nothing... Maybe tumor did shrink some and was bigger to begin with .. i dont know if that helps.. i am on this post bc i saw u had written on here and i wanted to reach out to u....

    With that being said, u r strong and will trudge forward because u have to and u r going to do what u have to do get through this.... I pray all will be ok and u will take the next step in your journey... You will soon be moving forward again... I know it

  • shianne29
    shianne29 Member Posts: 452
    edited January 2013

    Lago (or s it Iago) space 89 that's me!!! Lol.

    Ok I guess I'm over the shock. I'm still pi$$'d but now I can almost smile. Or is that a snarl??? Yes, I found a wonderful new BS that has been fantastic. She managed to get me into her very highly demanded PS BFF(lol) inside of a week. Serious. Consult with PS squeezed into same day as BS. That was the 4th on the 8th I was called with a surgery date of the 12. This was a Saturday. They both, along with an anesthesiologist did this on their day off. In Canada, surgery is not scheduled on weekends!!! Anyway, long story short. New BS great. Old BS $hite!!!



    liv- no apologies!!! I'm all for innuendoes!!!!! You are right also, it too can be reconstructed. Just the shock!!! I can do this!!! I have to and I can!!!!



    Damn, I know most of you have been in my shoes and can identify my feelings. That's the beauty of this site. Us newbies get the words of wisdom from experience. Experience gets the joy of helping others. I can't wait to be experienced!!!! Put this all behind me and help others.



    Shari!!!!!! *hugs* my buddy!!! Yes. Moving slowly forward now. Thank you for letting me vent.



    I'm so glad I found BCO.

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    I am a newbie too technically.. Haha ... regardless, I am here for u bc no one understands this more than us!

  • lago
    lago Member Posts: 17,186
    edited January 2013

    shianne29 It's Lago with a lower case L. More informal with lower case. So glad you have a  new team. It makes a huge difference. Trust me the doctors don't do surgery here in the US unless it's an emergency either. Sounds like you have an amazing dedicated team now. Back to climbing up that hill. You will get there and come back to this site to help others.

    Keep us posted on your progress

    ♥X♥X♥

  • shianne29
    shianne29 Member Posts: 452
    edited January 2013

    So, yes my tumor was 7 cm x7.5 cm. I guess mri's only have a 93% accuracy rate. Who knew.

    Good news is I was down staged from 3 to a 2 and my grade was borderline 1-2. There was no nodes involved.

    I'm over my anger and frustration now and just want to get rads started so I can get them over with. I see my RO February 12. BS says that flap reconstructions hold up well to rads and she is confidant that I will not need any more surgery aside from the nipple and final shaping procedures.

    Bad news now is that I have an infection in part of the incision on my tummy :-( start antibiotics today and home care is coming everyday to change bandages.

    Good news is tummy still numb so I can't feel anything lol.

    At least the good is outweighing the bad!! Lol :-)

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    Down staging is good and nothing in the nodes is excellent... That's good news I will say...r they radiating breast area then? Was there anything In nodes before. Don't recall why u had said before.. And what was size before? Bigger than now?

  • lago
    lago Member Posts: 17,186
    edited January 2013

    One thing I've learned in this journey is the glass is always 1/2 full AND 1/2 empty. Try to stay focused on the 1/2 full (numb tummy/no pain) Wink

    It took me a while to get over my anger at my old imaging place and former gyno. (Won't get into it)… but I moved on. I just let people know not to go there for mammos as well as not to go to this gyno.

    Hope those antibiotics do their thing quickly. I know several women that had to deal with this. One of the more common SE unfortunately.

  • shianne29
    shianne29 Member Posts: 452
    edited January 2013

    Shari, the original size was thought to be 6.5x5 and no nodes. I thought hat was huge considering I'm only barely a B cup. Lol. More like an A.

    I had planned on the diep now and maybe down the road having them both enlarged with implants to a B/C. Not sure if rads will eliminate that possibility.

    lago, you are so right. I'm usually a half full kinda person. I've met this thing head on and only had a few breakdowns, unfortunately my entering this board was during one of them. But as my husband said to me, sometimes it's the little things that are the final straw. Oh well, it is what it is and I can't change the past. But I can sure as hell make my own future!!

    I have been reading the YKYACP thread and laughing so hard, thinking how amazing all you ladies are!! I think that should be an automatic link for anyone starting down this road!!!

  • lago
    lago Member Posts: 17,186
    edited January 2013

    Humor is the only way to get through. My total tumor size was 6.5cm in my barely not full 34B as well.

    But implants put me at a 34D! I told my PS a little bigger, but I forgot a man's idea of "little bigger" when it comes to boobs are quite different then most women's. My reach to recovery partner who I met for the 1st time asked me "were you always that big?" Then she said "the size is perfect for you… almost too perfect that's why I asked" Surprised She was pretty fun… as we sat through her first TX of AC!

    Haven't been on the YKYACP much lately. I'm 1 node shy of a stage III so don't want to piss anyone off Tongue Out

  • Shari0707
    Shari0707 Member Posts: 448
    edited January 2013

    I am not sure of my stage..clinicallyvtheyvtold me two.. But u never know bc I haven't had my surgery yet.. I jus followed shianne (Luanne) here

  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    Hello, I am new here and will start neoadjvent chemo next week. Is there anyone else who is also doing chemo before surgery to shrink the tumor?

  • ridergirl
    ridergirl Member Posts: 443
    edited January 2013

    bcfree welcome to the boards. I'm sure you will find some amazing ladies here to share with, I know I have.  That treatment was the plan I started out with, but for now breast surgeon has said I don't need the surgery - cancer is already in my bones so no advantage he says - but I started with 2 AC and then moves and switched trestment centres where the new MO switched to FAC, have had 3 of those (not working) and now on to Taxol.  First taxol was last fri, second is this fri< is that the same schedule you are following? So far the taxol is much less nauseating than the AC or FAC but the neuropathy in my hands is getting worse.  Does seem a little easier tolerated tho.

    Please keep coming back and posting - everyone here is very supportive

  • lago
    lago Member Posts: 17,186
    edited January 2013

    ridergirl be sure to inform your onc about the increased neuropathy. This is very important. Taxol can do that but you don't want it to be so bad that it can't be reversed. AC can be really tough from what I have heard so it does make sense that the Taxol seems easier. Thing is any of these chemos have their own special SE. Some not as bad as others.

    I have also seen many women here get weekly Taxol. Crossed fingers that Taxol works for you.

  • shianne29
    shianne29 Member Posts: 452
    edited January 2013

    bcfree. I did neo chemo too. 4AC and 4 taxol. As lago said SE are different for everyone but I sailed thru the AC, no nausea or anything other than hair loss and only on my head. Taxol was horribly painful for me. No neuropathy, didn't lose nails but all my fingers and toes peeled and were numb for a few days after each treatment. My head hair started to grow again on taxol also but eyebrows and lashes fell out lmao. Go figure. It was the pain that was the worst. BUT!!! It is doable. Get pain pills before and take any preventative meds they give you. And I found exercise helped. Sounds dumb but the more active I was the less pain and for shorter duration.

    Good luck. Keep us posted!!

  • Ossa
    Ossa Member Posts: 919
    edited January 2013

    bcfree.. i had chemo first.. 4 a/c then 4 taxol  A/c was doable nausea excactly 4 hours after each session lasted a few days.. taxol... first treatment ,fine just lost tastebuds.. second treatment mouthsores nd bonepain to the point I ended up in hospital for 5 days.. third and forth treatment no real issues.. but in hindsight it was all doable.. Had frozen gloves during taxol so did not loose fingernails. lost some toenails though... Hope you breeze through it

  • MMTOMH
    MMTOMH Member Posts: 127
    edited January 2013

    ridergirl- I, too, had neoadjuvent chemo.  AC x 4, then Taxol x 12.  Remember that chemo is cumulative, so each dose builds on what you've had before.  If you are already getting neuropathy, you need to let your MO know.  Only pre-meds I needed for taxol was claritin and benedryl because I got a pretty good rash after my 2nd dose.  No problems after that.  I had a tiny bit of neuropathy in both my middle fingers the last two doses and ended up getting quite a bit of swelling in my ankles around that time as well.  My eyebrows/lashes fell out about 4-5 weeks after finishing! taxol, but the hair on my head was growing the whole time! LOL.  I didn't use any ice pack and kept all my nails...didn't even turn black...weird how everyone is so different! Take care.

  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    shianne29, ossa, mmtomh, thank you for sharing the experience with me. I will also report my experience after I get started on chemo. Hope my tumor will shrink a lot during the chemo!

  • liv-
    liv- Member Posts: 521
    edited January 2013

    shianne - simmilar to me, when i could exercise on the good days i felt pretty normal and did find exercise really helped mentally and physically.

    bcfree -( i wish)..love you name!!...good luck with chmo, it will be done before you know it.

    xx

  • lago
    lago Member Posts: 17,186
    edited January 2013

    bcfree I didn't have neoadjuvent but there is an advantage. They can see if  your treatment shrinks your tumor… and if it doesn't then they can try something else before you have to go through an entire course of the first cocktail. I will never know if my cocktail was the right one for me since my cancer was removed before chemo.

    And I also concur that exercise makes a huge difference. Do what you can on the bad days but really try on the other days to at least get out and walk.

  • Ossa
    Ossa Member Posts: 919
    edited January 2013

    bcfree... forgot to add... My chemo

    shrunk my tumor to nothing Started feeling it get smaller by second round of AC.. By the time AC was done, there was no sign of tumor..Hope this comes true for you as well

  • lago
    lago Member Posts: 17,186
    edited January 2013

    Awesome news Ossa!

  • ridergirl
    ridergirl Member Posts: 443
    edited January 2013

    MMTOMH and whoever else that mentioned it thank you! for the advice re neuropathy. I am supposed to have day 8 treatment tomorrow and have a call in to my MO now to ask about lowering dose etc. Can't stand it like it is.  Am not doing the icing or anything - no one mentioned it before my first taxol and i guess i didn't realize i should have but probably too late now - anyway hope i have good luck with the nail issue i am loving that they are growing after working on a farm for 15 years and having them always dirty/broken. Hair is mostly all gone from AC except a few brow/lashes and starting to grow back on my head.  Guess i will lose it again to new drug??? I don't even know...so many details..and all of us so different with reactions...

  • hightide1
    hightide1 Member Posts: 244
    edited January 2013

    Ridergirl

    I had issues with neuropathy also. Kept me awake at night. My MO gave me gabapentin(neurontin) and it really helped. I have a friend who uses Cymbalta with good results.

    Hope you can find a solution soon.

  • bcfree2013
    bcfree2013 Member Posts: 94
    edited January 2013

    ridergirl, lago, liv- Thank you all for the information and encouragement. I will continue to post my chemo experience. Ossa, it's wonderful that chemo melted your tumor!!!

  • tellie_savalis
    tellie_savalis Member Posts: 121
    edited September 2013

    Hello,

    I am posting this for anyone who is looking through this thread like I did over a year ago, hoping to find good news for people with similar BC.  Feb of 2012 I was dx with what turned out to be IBC.  I was stage 3b grade2 and had node involvement (you could actually feel them).  Tumor size 15cm (this is after shrinkage by chemo…spread throughout breast, Dr. described it like scaffolding in a building).  I had chemo first, TAC condensed into 4 doses instead of 6 to hit it hard.  Surgery and then rads.  During this experience my surgeon decided I had mets, my MO said bullshit.  I had multiple scans, and even a spinal biopsy (fun…).  Long story short…they did not find “convincing evidence” of mets.  I am a year out of tx and doing great.  I was at the gym this morning thinking “Wow, at this time last year I was just finishing up rads, it seems so long ago”. 

    It is not an easy fight, I still get scared.  The Surgeon repeatedly telling me I had stage 4 put me in a depression, I dropped weight and wouldn’t leave the couch.  I was given Effexor, which I would say avoid if you can, getting off it is a bitch, but it did get me off the couch.  I have had blood work every 3 months, although at last visit MO moved it to 4 months!  I am as it stands cancer free. 

    So I am writing this for people who are looking for hope.  Every Dr. visit I had it seemed the news got worse in the beginning.  When I would look for similar cases it scared the heck out of me.  DO NOT judge your cancer on statistics!  Know that there are people out there who are doing well and who have beaten cancer.  Believe that you can too.  One day the crap you are going through will just be a memory. 

    If you ever need someone to talk to or have any questions please contact me through FB, I check it pretty much daily.  Just search for Corky N Charlie Mcclean.  

Categories