Calling All with Tumors 6 cm +

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  • Springtime
    Springtime Member Posts: 5,355
    edited January 2012

    J-Bug, you describe it well. When I was Dx'd with the 6.7 or whatever it was (we'll never really know I guess) the doc was totally flabergasted and pulled in other docs to examine me. I felt like a side show. Everybody's lumps were smaller! I thought for sure I didn't have much time left given their reaction.... Not very helpful for the spirit, mind, and psyche, I know you will agree with me on that!!!

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    I definitely agree! Even at my last follow up for bmx, my surgeon was going through my treatment list and acknowledging that I am well into radiation treatments and that Tamoxifen is next, then he still brings up that you just never know if this cancer thing will stay away. I realize that sometimes I live in denial of this the fact that I just faced this HUGE life-changing event, but sometimes I think that resting in a place where I feel whole and healthy is a good thing. So is it denial or am I just ignoring some of the unhealthy aspects of my life? Either way, I didn't feel like I needed my surgeon reminding me that I could be back for a new primary or metastasis.

  • beth1965
    beth1965 Member Posts: 455
    edited January 2012

    Thanks so much for all the information everyone it really helps when you at least have a clue whats going on in your life. I will definately ask about the before surgery chemo too

  • FLislander
    FLislander Member Posts: 243
    edited January 2012

    Jbug I'm following your path here, on taxol now then BMX, then RADs

    People keep saying that what if it comes back, are they practicing for the worst possible thing to say? If the dr is giving us the most aggressive treatment just let us at least have moments of thinking this may be over soon.. All the best

    Cindy

  • shells43
    shells43 Member Posts: 1,022
    edited January 2012

    Well said, Cindy! That's all we can really do, if we've had all of the treatment offered/possible, what is left? Hope and light.

    I'm not super-religious but I really like a saying I read here somewhere - Don't tell God how big your cancer is, tell your cancer how big your God is!

    That especially hit home with me.

  • lago
    lago Member Posts: 17,186
    edited January 2012
    I'm F*#@ed. I'm an atheist.  Tongue out Seriously I'm not going to worry until someone says I need to worry. I have good habits that's all I can do.
  • Springtime
    Springtime Member Posts: 5,355
    edited January 2012

    Jbug, I seriously think some of these docs should just keep the thoughts running around in their heads IN their heads and not coming out of their mouths! I don't think they really understand how a few "side comments" can totally dash our spirits... ugh.

  • cdairth
    cdairth Member Posts: 176
    edited January 2012

    Hi Sprintime. Hi Iago.  I didn't know about this thread. I am a "big girl" also. My tumor was over 6cm. I had neoadjuvant and it shrunk about 50% but I still had to have a mastectomy. My margins were very close and I am just finishing up rads. 

    My onc (new one) also reminds me that I am "high risk." He seemed generally excited to have a "high risk" patient so he could enroll me in lots of clinical trials. I was so happy for himTongue out

     I wish they would keep their "side commments" to themsevles as well. Sometimes I feel like I live on the edge of a knife.

    Cath 

  • lago
    lago Member Posts: 17,186
    edited January 2012

    I think patients should speak up to their doctors and let them know that they are scaring the shit out of them with these comments. My BS, PS and onc have been great and don't do that but… the first PS I saw had me running for the hills after talking to him. I was considering not doing reconstruction because of him telling me how much the expanders he places will hurt and so worried about infection. Oddly enough I didn't need any pain meds, not even a Tylenol after BMX and no infections.

  • beth1965
    beth1965 Member Posts: 455
    edited January 2012

    I was told by my surgeon today that she wants to remove all my lymph nodes on one side as well as the BMX  she said due to the size of my tumor and MRI  results she feels it is her recommendation for me.

    Anyone else have all nodes removed i would love any advice about pain and management of nodes

    -i am back tracking through the posts now

  • lago
    lago Member Posts: 17,186
    edited January 2012

    Beth if the MRI showed lymph invasion that might be why. I know in my case the MRI didn't show any invasion but there was a concern about micromets. My BS took the first level (in my case that was 10 nodes on the left). They were all clear so there was no need to take more.

    I would ask your BS if the all have to come out. S/he should be able to explain.

    BTW I do have mild LE. *Be sure to get  your arms measured BEFORE surgery so they have a baseline size of your arms. I didn't know this so we really don't know for sure how much my arm increased in size. My right arm has always been bigger than my left because I'm a righty.

  • bethcw
    bethcw Member Posts: 98
    edited January 2012

    I have been lurking on this forum since I started chemo back in July, and finally got around registering.  It has been a great help to me, so I thought it was time to post.  My tumor was a mix of ILC and IDC.  I read earlier that someone described theirs as barbell shaped. That is the way my area was described as well with the whole area measuring over 6cm. 

    I had all of my lymph nodes removed during my UMX.  My surgeon did a SNB during my surgery, and both of my sentinal nodes came back positive, so he removed the rest of them at that time.  Thankfully, the rest turned out to be negative.  I do have a bit of remorse since all of the rest were taken out, and then ended up being negative, but better safe than sorry I guess....

    I have not really had a lot of issues related to the lymph nodes being gone, it is important to start stretching that side out as soon as you can.  Reaching overhead continues to be my biggest challenge.  My underarm can sometimes be tight due to some cording, but the best thing I have done for that is seeing a physical therapist.  She has been a trememdous help in stretching, massaging, and teaching me what to expect and to be on the lookout for as far as lymphedema.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012
    Don't tell God how big your cancer is, tell your cancer how big your God is!

    Wow, I love that!!

    Oh - and I need to change my signture now that I am (hooray!!) DONE with rads!!

    Bethcw: So glad you logged in and joined us! :)

  • beth1965
    beth1965 Member Posts: 455
    edited January 2012

    That is a great saying Windlass! Congrats on finishing rads you must be happy

    Lago i guess you getting 10 lymph nodes out was probly enough to have similar effect as having all in the way the arm area would react. I will definately measure my arm i never thought about that. What does LE do other than cause swelling hve you had any pain?

    Bethcw-i cannot agree more how helpful this site is. It sounds like the full lymph node removal has gone well for you. I will probly start inquiring about the physical therapist help on monday as it sounds like they are a great deal of help.

  • lago
    lago Member Posts: 17,186
    edited January 2012

    Beth1965 you need to get an LE PT to measure your arm. You shouldn't do this yourself. You can read all about LE here: linky  Just note that if treated early the chance of your arm getting as big as the picture they show is rare. As far as why I got LE. Well some women have lots of nodes some have less. I might be one of those who have less so 10 nodes might have been a lot for me. Also my mom had LE in her legs for years. I just might be predisposed.

    Bethcw Welcome. My tumor was 6.5cm total but 5.5cm of IDC and 1cm of DCIS. It is not uncommon to have combinations of invasive and non invasive at the same time. Even my other breast had a small amount of LCIS. Mine looked like cauliflower.Yes it stinks to get healthy nodes removed but I look at it this way… better that those nodes were clear than the other way around.

  • MMTOMH
    MMTOMH Member Posts: 127
    edited January 2012

    Hello Everyone - 

    So I am at day 10 after my first round of AC and I feel great!  I had a little bit of nausea, some dry mouth and peeling, and then I got a horrible GI Bug on day 7, but I recovered quickly.  I'm feeling really good.  Just caught back up on the thread and saw the % for nodal involvement you all found and I had to try it...my chance of positive nodes? 96.6%!!  Wow, feels good to be in that 3.4%!!  The best news of all though? I can feel that my tumor has shrunk a little even after just one treatment...sure motivates me to continue on!

  • lago
    lago Member Posts: 17,186
    edited January 2012

    Yay for shrinkage MMTOMH

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    I didnt' have neoadjuvant chemo (chemo before my mastectomy), so there was no chance for anything to shrink before my surgery.

    When my cancer was diagnosed, neither my oncologists nor my surgeon through my lymph nodes were involved. Once they got in there with the surgery, however, they found that the sentinel lymph node was a mess, so they kept going. By the time they were done, they had found twelve cancerous lymph nodes that were so cancer-ridden they no longer even resembled lymph nodes. My surgeon went on to remove all 28 lymph nodes, and was pretty freaked out when she got the pathology report. (I love her, btw - she's the greatest.)

    I tell you all of this only to say that when the experts palpate your underarm and say they don't feel anything it's not a guarantee there's no cancer there.

  • lago
    lago Member Posts: 17,186
    edited January 2012

    Windlass I totally agree. If my 10 nodes weren't removed I would never know for sure if they were clear. With tumors our size, and the likely hood of even micromets so high I would want to know.

    Windlass did they do an MRI on your nodes as well?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Iago: No MRI. Since there was absolutely nothing at they could feel, they were confident there was nothing there. They even had me convinced!.

  • lago
    lago Member Posts: 17,186
    edited January 2012

    My BS felt nothing and also saw nothing on the MRI (they did a MRI on both breasts before surgery… that's when they found the LCIS on the other breast). Given the size of the tumor >5cm standard care is to take out at least level one nodes. He thought for sure micromets. I just had a feeling I was clear. Bottom line is they really don't know for sure till the get in there. If they don't get in there you'll never know for sure.

    BTW I believe my BS does MRIs before surgery for a number of reasons but he A. wanted to see what if anything was going on in the other breast and B. he wants to get a better look before surgery.  

  • cdairth
    cdairth Member Posts: 176
    edited January 2012

    This whole node thing kind of scares me. I had MRI's on both breasts and had the node area done as well. No nodes showed up positive, so they went ahead and gave me chemo. After chemo, I had surgery and 2 sentinel nodes dissected with both coming back clean. I will never really know now about me nodes though. The chemo could have cleaned up the cancer. I've been reading material that suggests sentinel node biopsy after chemo does result in an increased percentage of false negatives; however, according to my understanding, it is still a SNB after chemo is still considered fairly accurate. Hmm. Apparently, once the cancer is in the nodes, there is often a detectable residue even after chemo. Even so, I wish I had a SNB before chemo, even if it had meant more surgery. Making all these decisions while terrified is not good...

  • cdairth
    cdairth Member Posts: 176
    edited January 2012

    Sorry about the mid-sentence brain fade on previous post. I meant to write: ; howver, according to my understanding, a SNB after chemo is still considered fairly accurate. Geez. I wish I would stop with the typos etc.

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    beth1965: This is a thread that I started when I had to make a decision between sentinal node biopsy (SNB) and auxillary node dissection (AND): http://community.breastcancer.org/forum/91/topic/776527?page=1#idx_8. Keep in mind that only two of the women answering were in the 6 cm+ category. Regardless, it was helpful and the surgeon enjoyed my challenging him, I think. : ) My surgeon also did a nomogram to show me my risk, which turned out to be 98%! http://nomograms.mskcc.org/Breast/BreastSLNodeMetastasisPage.aspx

    Welcome to all of the joining large lump ladies! It is nice to see others with similar issues. I always appreciate everyone's contributions. 

  • J-Bug
    J-Bug Member Posts: 626
    edited January 2012

    MMTOMH: Day 10 is what I was told was the magic day in AC treatment and it was for me as well. That is the day the hair really falls. How is you hair doing? That part is so traumatic. I wish you the best through this. AC is a rough road, but in a lot of ways, I felt better than I had in a long time as I could feel the tumor load decreasing.

    Some of the decrease in size that you will feel is also inflammation decreasing, which is still a good thing because it will help the surgeon be able to see which parts are cancer when it comes time for surgery.

  • lago
    lago Member Posts: 17,186
    edited January 2012
    cdairth at least you know that the c hemo was working. I had chemo after surgery so we'll never know for sure because the tumor was removed so now way to check. pluses and minuses no matter what path you choose.
  • cdairth
    cdairth Member Posts: 176
    edited January 2012

    Very good point. Thanks

  • MMTOMH
    MMTOMH Member Posts: 127
    edited January 2012

    Windlass - I had both MRI and axillary u/s to look at my nodes.  They were almost positive from the MRI that I had node involvement, but when we did the u/s, they found the right area and the nodes were all normal.  They couldn't find any to biopsy, which they would have done prior to chemo, if the nodes looked suspicious.  

    Lago - Thanks!

     J-bug - My hair is holding up so far!  I have noticed that my breast isn't quite so swollen.  My BS said I will have to have mx no matter what since I have such a huge area of involvement between the DCIS and IDC, but I'm all for huge, clear margins! :) 

  • Eve1956
    Eve1956 Member Posts: 183
    edited February 2012

    Lago,

    What's micromets?

    Reading through all the posts I'm freaked out because my BS only did a SNB and when it came back negative, no other nodes were removed. I thought I was in the clear but now I'm not as sure. Particularly because productive coughing issues led to CT scan of my chest, after x-rays were decreed "dirty", which led to them seeing a Sc. lesion on my left rib (same side as UMX) and they recommended a bone scan to rule out mets. They also wanted a CT Angio after seeing nodes and areas of concern in my lungs.

    So 3 days ago I had a bone scan, CT Angio Scan, and an Echocardiogram.

    Tomorrow I see my Onco to get the resuts of the bone scan, and Friday I see my Pulmonologist to get the results of the CT Angio.

    Will this ever end? 

  • lago
    lago Member Posts: 17,186
    edited February 2012

    Eve small amounts of cancer cells that can't be picked up by a US or MRI are usually micromets.  If you had 1 node removed I'm sure they dissected them well and made sure there were no micromets. Of course we know that even with clear nodes some of us do get mets.

    I'm going for my 3rd liver scan. (One before BMX, one after chemo and now one 1 year after chemo). The first 2 times they said benign cysts. I'm assuming the same this time but they are super careful with us now. If anything seems out of the ordinary they keep checking for a bit.

    I can understand why there is concern with the cough. Not sure what they mean by "dirty". Please let us know what your onc says… and don't assume the worst. There are many other things that cough could be.

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