Topic: Calling All with Tumors 6 cm +

Dec 3, 2011 06:58PM capinva wrote:

Mine was 6x4cm and I did chemo before surgery. I had 1 round of taxotere then 4 rounds of A/C. I opted to stop chemo after that to have the surgery and see what the nodes looked like. The pet scan didn't show any other hot spots. I had 5 out of 7 nodes positive but the tumor had shrunk 75%. So I go back on Dec 12 to start 3 rounds of taxol. Then rads then tomixifen (sp?). No history of anytime of cancer in my family, healthy and at my ideal weight or under all my life. Not sure how I ended up with this.

Dec 4, 2011 03:56PM - edited Dec 12, 2011 12:50PM by J-Bug

Hi flanelette! It's good to see you again. You posted several times in a thread that I had started similar to this when I was first diagnosed.

Capinva: Good luck with your Taxol. I just finished mine in October. I had such extreme joint pain and still do have quite a bit. My oncologist said it was unusual to have that level of pain. I wake up in the middle of the night and the joints in my hands feel misaligned and when I move my fingers I can feel bone and cartilage rubbing and my fingers won't bend correctly. It's kind of scary, but of course the nurses tell me that it's likely to go away. It isn't as bad during the day when I am moving around.

damazon: I just had my bmx with snb on 11-09-11. My nodes were clear, but I had been doing 4 AC/ 4 Taxol, so I had a good opportunity for that. I was told that I am not a candidate for implants because so much was taken with bmx and then radiation which will be soon. I am planning on DIEP flap reconstruction after healing from radiation.

Dec 12, 2011 09:29PM Elizabeth1959 wrote:

I had a 16 cm IDC tumor with one positive lymph node.  Although I met with an oncologist prior to surgery, no one suggested neoadjective chemo.  I had mastectomy with lymph node dissection.  One month later I had dose dense AC and then 12 weeks taxol.  I had extensive radiation and am now on arimidex.  I had bone scan and CT of chest, abd and pelvis  prior to surgery which were negative.  Tumor markers last month were wnl.  It is strange knowing I had such an enormous tumor.  On a positive note, I had oncotype dx testing with a score of 14.  I'm not sure when I'll have reconstruction.  I'd love to have some type of breast, but am not excited about major surgery.

Elizabeth

Dec 12, 2011 10:24PM MommaG wrote:

My tumour was 14cm by 14cm at my first chemo appt.  I had neoadjuvent chemo 4x AC and then 4x taxol.  Unilateral mastectomy with axillary lymph node dissection on Dec. 2nd.  At my last chemo on Nov.3rd my tumour was 8cm by 7cm but I could tell it had started to grow again before my surgery.  I have also noticed lately that my supraclavicular node feels enlarged.  Waiting to hear back from my onc tomorrow.  My radiation should start in the next couple weeks...hopefully sooner though.  What a journey this is!  It's nice to be able to share it with others who understand what's going on.  Take care of yourselves ladies!  Hugs to all!

Dec 13, 2011 01:52AM - edited Dec 13, 2011 01:57AM by BlueCowgirl

Hello Giant Tumor Sisters!

Mine had strange dimensions, they initially called it two masses but turned out they were connected. Something like 7cm total length, wide at each end with skinny area connecting...I picture the shape looking like a barbell. Mine was both ductal and lobular, and some previously undetected cribiform and DCIS was found in post-surgical pathology.

I had neoadjuvent chemo, dose dense ACx4, Taxolx4. Shrank tumor a lot. I have to say, it was really cool feeling my tumor shrink during chemo and what kept me motivated to keep going through some really rough SEs.

BS pushed me for trying lumpectomy, bad margins so got unilateral mastectomy in the end anyhow. (still part of me wishing I got BMX...still considering it). Still had 3 positive lymph nodes at surgery, but my doctors didn't think that was surprising with ER/PR+ HER2- status. 

Got very aggressive rads -  chest wall, axilla, supraclavical nodes, another I can't recall name (chemo brain still!).

Just started Tamox this week.

PET I had before rads showed a few hotspots but RO believes they are false positives and was comfortable starting rads before additional diagnostics. Now that I am "healed" from rads to my RO's satisfaction, I am about to begin series of tests to confirm that my PET hotspots are not mets: lung CT, endoscopy, colonoscopy, whatever they call the -oscopy up your nose. Noseoscopy? Up your nose with a rubber hose? Whatever.

Hope to gain more insights from this thread, thanks so much for starting J-Bug, and hoping with all my heart for clean scans so I don't break this thread's No Stage IV status ;) And best wishes for your hip J-Bug.

Dec 13, 2011 02:31PM - edited Jan 14, 2012 01:55PM by J-Bug

I got a good news phone call this morning from my RO. She is the only doctor that I use that is outside the hospital system that I have been using. When I saw her yesterday she did not have access to the pathology report that showed the details of what was found last June. She got access to that today and said that she had no reservations now about cancelling the PET. I can't remember the details of what she said about what was found, but she said it made sense that that was not an area of concern. 

So although I will never know my beginning stage as all of you do, I do know that right now, there is no reason to think that I am stage iv. I thought that I might find more women here who didn't know their stage. I guess I could know what my post-treatment stage would be, but that just doesn't make sense in the medical world. My chemo started before I had any surgery or lymph node disection, so those factors will not be known. I only know T size and no Metastasis. Node involvement at diagnosis will never be known. 

Dec 13, 2011 03:02PM - edited Dec 13, 2011 03:03PM by J-Bug

BlueCowgirl: I was wondering if some of you might be doing that with the staging. I had thought about doing that myself. Every time I have brought up staging with the docs they are all very quick to remind me that we will never know. That kind of frustrates me, but I get it.

It is so strange how just having a "label" or diagnosis calms us to some extent. I have a nephew who is severely disabled. He has never been able to walk, talk, eat, etc. The docs have never been able to give him a diagnosis except that part of his brain did not develop. He is now 14. My sister-in-law commented that that caused so much alarm for people who wanted to discuss him. It's like if we can find a group of people who have the same symptoms, we are more relaxed because we know this has happened to someone else.

Dec 23, 2011 11:08PM windlass wrote:

I'm in this club too. I had a 13 cm "area of involvement," in which the largest single tumor was 5 cm. Apparently the entire lower half of my left breast was a cancer-riddled mess.

My breast surgeon was a little freaked after my sugery. When she described the state of my lymph nodes, she said several of them were no longer even identifiable as lymph nodes since they were pure cancer. 

I was scared to death when they did the numerous scans to stage me and see if the cancer had spread, but by the grace of God and lots of prayer, my scans were clean.

My heart goes out to all my sisters waiting for scan results.

Dec 23, 2011 11:23PM ebann wrote:

Hi everyone, I had IBC (inflammatory breas cancer) and DCIS in the other breast.  The tumor was 9 cm and continued to  grow during chemo to 12.5 cm . I did chemo first for 9 months. My tumor did not shrink. I went in and did a radical mx. They found out it spread to my chest wall. I started up with rads and I had to continue for chemo for another 4 months. Went in for a PET scan and it was NED. I did reconstruction a year later. My chest was so concaved that I was not able to do TE and Implants. So I had a DIEP. I was cancer free for a year and a half. It has now spread to my bones, nodes, glands, lower vertabre, neck and most of all in my liver to many lesions to count. I have been doing chemo for a year now. I am hoping to go on maintenance soon. We shall see. When I was first dx with IBC I was stage 3B now of course I am stage 4. I am a fighter. I am grateful i have my faith, family and friends that get me through.

Dec 31, 2011 07:03AM sarahlou1967 wrote:

Hello LLL, (LLL means large lump ladies) LOL,

Mine was large at 6.5cm and considering I had small boobs hid itself pretty well, unfortunately I have spread through my lymph nodes to my lungs but after chemo the lump had reduced to 2mil which is just fantastic, I have now had a mx with lymph node clearance so the primary mother source has gone, and the mets on my lungs are now tiny and stable two words I absolutely love.  Of my lymph nodes they took 13 only 1 was infected but because I did neo-ajuvant chemo we will never really now how bad they were.

Sending you all lots of love and light

sarahsweetyx xxx 

Dec 31, 2011 03:13PM - edited Jan 14, 2012 02:01PM by J-Bug

sarahsweety: You did have an awesome response to therapy. Mine went from 8.6 cm to 2.5.

windlass: I was not consistant about self exams. I mistakenly thought that breast cancer was not a threat to me because there was none in my family. Later I learned that only around 10% have a genetic link and then I also learned that there were three in my family who had it and on both sides of my family.

So, how I found it: I had a yearly exam in April at my 40th birthday which included breast exam. The doctor found nothing. She advised me to get a mammogram scheduled because I had just turned 40. I said, yes, I want to get right on that because I did do my baseline at 35. A few weeks later I found a lump during a self exam near the nipple. The whole right side of my right breast was very thick and hard, but I did not notice that or realize that that could be a problem area at the time. I made a doctor appointment very soon because I thought that the sooner they can tell me that it is nothing, the better. Then I thought that I should prepare myself either way so I started searching for breast cancer symptoms online. I saw the list of things such as nipple inversion, dimpling on the breast, leakage, irregular shape... I had all of these things except leakage from the nipple. So I went into that appointment quietly knowing that something was seriously wrong.

My husband had just been arrested in April for arson of a house that we were trying to move from in another state. We had been dealing with the insurance company on this for a year and a half. We knew that it wasn't possible that he had done it because he was not there when it started. However, the timeline was too close and they couldn't find any other likely person. It would have cost us $30,000 in attorney fees to fight this or $4,000 to accept a plea. Needing this to be done so that we could move on in my healing process and needing him here for me and our two special needs children and insurance, we took the plea. It's been a rough year but it has drawn us all closer than ever. I am looking forward to the new year and the hope it has to offer. 

Jan 1, 2012 11:56AM sarahlou1967 wrote:

In answer to your question windlass I did'nt noticed my massive lump unfortunately because my breasts had always been small and very firm to touch very dense tissue but this had always been the case and I never needed to wear a bra, I just did not notice any difference what alerted me that there may of been something wrong was the fact that I had a constant itch on my right breast I was referred to the breast clinic where they were able to dx it almost instantly especially with the help of the biopsy and ultrasound. I had no symptoms, no change in nipple, or breast shape, no pain only an itch!!!! Thank god I scratched that itch!!!!

love and light

sarah xx 

Jan 1, 2012 02:21PM Lulu22 wrote:

I found mine last December and immediately went in for a mammogram. Unfortunately the radiologist read my repeat mammo as a fibroadenoma and sent me home assuring me I was fine and didn't need to return for a year. When I had my annual checkup in February my PCP seemed comfortable with the diagnosis. Over the summer the lump got bigger and I finally went to my PCP to demand answers and/or treatment options and she sent me back for testing. I got the BC dx on my kids' first day of school. On the initial ultrasound my tumor measured at 4-5 cm. but my MO, BS and I all agree that by the time I started neoadjuvant chemo a couple of weeks later it was at least 6 cm.. I just finished my last chemo (4 AC + 4 Taxol) two days ago (yeah!) and the tumor is definitely smaller and further from the skin than it was so my chances of getting off with a lumpectomy have improved considerably.

Jan 2, 2012 07:40AM windlass wrote:

Gutsy: You just imspired me to dig around here and see if I can find my original pathology report from March. I tried to read it, but the world was crashing around me too hard to make sense of it at the time.

Jan 2, 2012 08:59AM - edited Jan 14, 2012 02:04PM by J-Bug

Good morning large lump ladies.

I was looking back through the posts this morning. Damazon: I noticed your comment about implants. I haven't seen any comments in the group or from anyone who has had a 6 cm+ tumor ever being eligible for implants. Is DIEP recommended to all of us? It was to me. My bmx was on 11/09 and rads start next week so it will be a little while still.

Funny story: I went to a cousin's house for a holiday party. I have another cousin who has always been extremely small breasted and thin. No one in the entire party had seen me since my cancer diagnosis except my mom and stepdad. I am still nearly bald from chemo and at that time a month after bmx. I was wearing a head scarf and looking very concave. My cousin has just had implants. She took me aside and tried to talk to me as a confidant about how much it would be good for me if I went ahead and had implants done. She said that it would make me feel so much better about myself... yeah, thanks, I'll get right on that for you. : ) This is the kind of stuff that teaches me to ask more questions, not spout opinions. I am sure I have said many equally uneducated things.