Calling All with Tumors 6 cm +

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

I'm F*#@ed. I'm an atheist.  Seriously I'm not going to worry until someone says I need to worry. I have good habits that's all I can do.

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 him

 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 

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

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.

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.

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!

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.

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

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 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.

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!  

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.