Calling All with Tumors 6 cm +
I just wanted to start a thread for those of us with the largest class of tumor size. Mine was measured at 8.6 cm when diagnosed. Due to doing neoadjuvant therapy as my first treatment, my staging will never be totally known. I wanted to start a thread for those of us who are in this high risk group because some treatments are better than others for this group.
I would love to hear how everyone's treatments are going who have had this tumor size. Have most of you also done neoadjuvant therapy? (I hear this is more common because it reduces tumor size in order to be able to get clean margins as well as reducing the risk of spreading cells during surgery.) My lymph nodes were clear at surgery, but that makes sense since I already did a systemic treatment. How many of you ended up with lymphedema? How many opted for bmx even if it was not medically necessary? How many of you ended up finding more cancer after surgery? (I hear that this is much more common with larger tumors.)
Comments
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Mine was 8 cm by 8cm by 4 cm. I had mx and the path report said no nodes, to everyone's surprise. I had chemo after, then rads & now on arimidex for about 3 yrs. I didn't really read my path report carefully then lost it, just got a new copy and lo & behold at least half of my cancer cells were mucinous, while the others were rade 9 for very aggressive, and though at the time I kept joking it was all the cabbage juice I drank, I think it was the mucinous cells that saved me. I keep imagining a big glob of "mucin" the aggressive little buggers couldn't fight their way through.
A big Knock on Wood whenever I talk like that
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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.
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My path report suggested 7 cm lobular cancer which included three tumours and over 100 individual sites of cancer. My surgeon recommended mastectomy due to the multicentric and multifocal nature of the cancer. My SNB was clear except that with later H&E staining I had 2 of 3 nodes each with a cancer spot.
I have had 3rd generation chemo, now finishing chest wall radiation along with radiation to the axilla, mammary and supraclavicular nodes.
In January I will start tamoxifen for two years and letrazole for 3 years.
I want my breast back -- any one have any success with implants after radiation?
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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.
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Hi everyone, My tumor measured approximately 10-11cm, I have been doing neoadjuvant chemo since august, I have completed 4 FEC and 2 Taxotere with Herceptin, my tumor has shrunk so much that they cann't feel where it is anymore, My Onc and Surgeon are really happy with how it has responded. I will have another MRI after the next 2 Taxotere's and Herceptin and then surgery, we haven't talked about what will happen at surgery yet.
I had 2 positive nodes at the time of diagnosis which was confirmed with a biopsy, all my other scans were clear though.
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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
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My scenerio is much like bella, though slightly smaller, 9cm IDC. I am very close to 2 years post diagnosis. I did neoadjuvant 4 of FAC, 12 of Taxol & Herceptin, and then continued with Herceptin the rest of the year & 27 rad treatments. At surgery time, the tumor had melted and only on one slide of many did a couple of cancerous cells show. I had mastectomy with ALN dissection. Pathology report confirmed nodes were now all clear and I had 8-9 involved when diagnosed.
Regarding lymphedema, yes, unfortunately I did develop it about 5 months after my last radiation treatment. It has been a bear, and I am getting consumed with dealing with it.
I had uni mastectomy but will be having prophy with diep construction in February by choice. Med. onc said it really is not medically necessary BUT my large tumor never showed on the two mammograms I had but we could feel the enlarged lymph nodes. It stinks it spread to the axillary lymph nodes, but then again that is how I knew something was wrong. Would hate to think about what could have been. I look at it this way, those little lymph nodes were doing their job. Thankgoodness!!! All other scans were clear. The other reason for having prophy is my mother had breast cancer too, after menopause, hers was er +. I don't want that one sneaking up on me in the other breast. Once is enough.
Be well ladies
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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!
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I am being asked to do another PET scan next Monday because I had a questionable area on my hip before chemo. There was uptake in that area, but the biopsy came back negative. They want to double check that before moving forward with radiation, because if the cancer had metasisized the treatment plan would change. I would find it hard to believe that they would find anything after doing 4 AC / 4 Taxol DD, so I am not too concerned.
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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. -
BlueCowgirl...I almost spit my coffee out my nose because I was laughing so hard at the "up your nose with a rubber hose". We seriously need that kind of a sense of humour through all this crap!
J-Bug...good luck with the PET scan on Monday. I'm sure everything will be fine!
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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.
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J-Bug, not just good news, but great news! Thank you for sharing it.
Yes, staging can be complicated with Neoadjuvent, which a lot of women on this thread had....So you are not certainly not alone in not knowing. I too wonder if I had complete lymph node invasion before chemo or just the ones they found in surgery. Who knows? I did have a sentinal node biopsy at the time of my breast biopsies, so it is only based on this that I was labeled Stage IIIa due to size of tumor, the fact that it spanned multiple quadrants, and I had lymph node invasion. I think a lot of the staging you see above for the neoadjuvent women is just an educated guess. So...I know I was at least IIIa - which I much prefer to any higher stage I might have actually been at diagnosis, so that is why I put IIIa on my sig line. Clear as mud?
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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.
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J-Bug, I will try to find the article my radiologist gave me at diagnosis to explain staging. I don't know if I can find it, but I do remember that I was staged at III due to the tumor being more than 5cm, involving more than one quadrant of the breast, and having a positive node. Did you have a full body PET prior to chemo, or a scan of your hip only? Was there a hot spot in your axilla? Do you know if your tumor was in multiple quadrants on your diagnostic testing? You don't have to answer here if you don't want, but if it is important to you to know your staging, you could make your own educated guess with that info. I totally understand why you want to know, I wanted to know too.
Personally, I think staging (other than stage IV obviously) is a bit of an art rather than a science in many cases. More than once, I have seen people's signatures and wondered how they were staged as they descibe, given the other information in their sig.
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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.
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Windlass- I am exactly in that scenario right now....my tumour was quite large but the surgeon was happy with the 4mm of clear margins around it. The part that is not so good is that many of my lymph nodes were also pure cancer. Had a bone scan yesterday and a CAT scan coming up soon as well. I hate waiting!! I just want to know now what's going on.
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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.
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Hey Big Sistas -
Seems like there are quite a few of us here. My tumor was 9.7 x 9.2 x 4.5 cm, I like to think of it as a tangerine size, since I work with citrus.
No nodes here either according to SNB, but unlike a lot of you, my Onc did not give me any scans. I wish I knew for sure, but I just have to trust that all is clear. My RO who sees me for followup now did get me a chest x-ray, CA 27/29 test and BRCA tests when I told her how anxious I was about not knowing. This was in October, about a year after the end of all my treatments. Everything came back fine, and all my bloodwork looks good, so I'm knocking on wood, too. No PET or CT scan though unless I have symptoms, they say.My tumor was "poorly differentiated" but the score was a 7 on the Nottingham Scale (Grade 2). I guess that is how it got so large so fast? I am sure I had it at least a year before I went for my first mammo. It also sort of went crazy after the biopsy. I felt like I could feel it growing or changing, it was really weird. Did anyone else experience that? I've always wondered if was just my imagination!
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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
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I have a question for everyone. Considering how huge our tumors were, how did we not notice them? I'd like to hear your stories.
Here is mine: When i was nursing, my breasts would lump up all the time, so I got used to feeling big lumps in them that would come and go. Trouble is, it had been a year and a half since I'd stopped nursing, so you'd think I might have figured out those lumps should have been gone by then. Weirdly, they sort of DID come and go, though, with my cycle. The primary tumor, 5 cm, would soften and harden throughout the month. So I just assumed it was hormonal. Big mistake!
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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.
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windlass - I didn't notice anything, just went for normal yearly mammo. I'd actually forgotten so was assigned a new date. One day I happened to stick my finger hard into my breat and it hit something hard! So when the breast screening unit happened to call saying there was a canclellation and would I like it, I took it, though scared.
At our breast screening centres, after the mammo a trained nurse does a clinical, like for 30 minutes, feeling everything, over & over. I kept my mouth shut, thinking I must have imagined that hared spot. she went over that area about 5 times and felt nothing odd. I jumped off the table and went whew..... till next morning when they called me back for more xrays...then....
They screwed up my paperwork, some idiot told me I didn't need a biopsy! Even though I had tons of calcifictions. Eventually my dr noticed no biopsy report in my file, she phoned me to ask why not, and very soon and off I went to get one. By that time my nipple was bleeding....I didn't need the biopsy to tell me between the hard spot and the bleeding I had cancer.
I coud never see it or feel it - only the breast surgeon did - he pointed it out to his resident.
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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
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Wow, ladies, our stories are all so different! But it helps to know I was not the only one to miss such a large tumor. I've felt pretty foolish, but now I realize maybe finding a lump is not as easy as I've made it out to be.
Anyone else want to share their stories of how they found the lump? (Or how they missed finding it for so long?)
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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.
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I supposedly started out with a 8mm tumour, little bump on the road I was told, lumpectomy and radiation. The pathology report after lumpectomy, showed a much larger tumour and a few of them. The surgeon read out the whole report to me, page after page. I think I shut down after page 2. All I remembered was that I needed a mastectomy and chemo. I did the chemo before the mastectomy. There was no evidence of invasive cancer after the chemo. I still can't read the report.
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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.
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My largest tumor was only 5cm but they ordered neoadjuvent chemo to shrink it since it was in the lymphnodes altready.I had a complete response to chemo so staging is tricky.Any of you ladies have responses like that to chemo before your MX's?
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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.
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