A place to greet and meet newbies to stage III
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Merry Christmas!
My MO and BS were both shocked by the number of positive nodes I had. If the size and involvement of my tumor had been evident from pre-surgical exam & biopsy, I'd have been given neoadjuvant treatment. I was thought to have had a ~1.5 cm. tumor, and my nodes appeared normal. Instead, after pathological testing following my BMX, it turns out I had a 5.5 cm. tumor and 22 positive nodes out of 25. *sigh*
I often wonder whether it's just as well that I had the large tumor removed, since it was aggressive--but then I read how well other women's tumors respond to neoadjuvant chemo, and I wish I'd had that opportunity for treatment before surgery. I also like the idea of knowing for certain that one's body responds to chemo.
As that's water under the bridge, I've been lucky to be offered adjuvant Perjeta for four infusions, which I was given in concert with Herceptin & Taxotere following four infusions of Adriamycin & Cytoxan. I meet with my MO in early January to discuss radiation, which I predict will be scheduled in late January. I'm supposed to have six weeks of daily rads.
It's a relief to talk with other Stage III people.
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I'm confused about something and would love someone with a clearer mind than mine to help me understand.
Let's say my biopsy/testing had revealed that my tumor was, in fact, 5+ cm. And then let's say I'd had neoadjuvant treatment, and chemo cleaned out my nodes--which nobody would have realized were cancerous, since that wasn't discovered until surgery. With that being the case, by the time surgery took place, my nodes would have appeared cancer-free--thus changing my diagnosis to IIB. Right? But wouldn't the actual reality of my cancer be the same (e.g., concerning prognosis) even though the doctors would consider me IIB in one scenario and IIIC in another scenario?
I hope that makes sense.
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What was your stage before neoadjuvant treatment and post surgery? Granny had IIIB (cT4bN1) before NET and IIB post surgery (ypT2N1c), but clinical staging and pathologic staging are different.
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JenPam, It does make sense and I don't think there's an answer. I think you'd have to go with the original staging prior to neoadjuvant therapy. In my case, I went in a stage 2b, I had 4 months of neoadjuvant chemo, then a bilat mx. Turns out the chemo had absolutely no effect on the cancer except to untangle the nodes. They removed 11 nodes and 10 still had active cancer, in fact they were bursting with it. My left breast had no response to the chemo and the right had in situ ILC which had not shown up in any of the previous scans. I have to hope the rads killed what was left, we shall wait and see. I think if I would have had adjuvant chemo I would have assumed it would have worked which from a psych standpoint may have been better, I just don't know. So I was 2b before chemo and 3c after, there just are no clear cut answers to some of these questions.
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JenPam, I had almost the same situation as you. They originally thought my tumor was 1cm. They were going to do a lumpectomy. Right before surgery, my lymph nodes started to swell and since I was pregnant at that time, we decided to do a mastectomy and entire axillary node dissection. Neoadjuvant was not an option for me because of the pregnancy. My pathology said that the breast tumor was 3cm and there was a total of 4cm of cancer in my nodes. 17 of 35 positive, making me also IIIC. However, they could not do any other scans except a chest xray (clear), and a liver ultrasound (inconclusive ), so I may very well be stage 4. If I was stage 4 and chemo and targeted therapies work completely, I would never know that I was stage 4 and we would assume IIIC still. It's not a good feeling either way.
I also had dose dense AC and now am doing 12 weekly taxol plus herceptin every 3rd week and perjeta every 3rd week for 4 treatments.
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hey ladies. I too was diagnosed with a 1.4/cm tumor and no nodes through the ultrasound and biopsy. 3d mamo showed nothing every year. . The MRI showed a bigger tumor (almost the whole breast) and node involvement but Dr said it wasn't possible. Well guess what? In surgery it became apparent it was possible. I had a 5+cm Tumor and 7 of 14 positive nodes . Dr said she was shocked. Not like I wasn't.!!! So the little f***** was hiding under a cyst . anything is possible good and bad with BC.
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I had a lumpectomy because my MRI showed no node involvement and the tumor appear 2 cm. They did the sentinel node removal and the doctor said they appeared normal and did not believe there was any cancer but the tumor was 5+. When the pathology report came back both nodes removed had active cancer. So it was decided that I would have chemo and then go back in for a mastectomy because I did not have clear margins. I also had a PET scan after my lumpectomy which did not should any cancer including under arm nodes. My doctor is still planning on doing the node removal during my surgery so I am anxious to see if there are more nodes involved. I won't know if the chemo worked since they have already removed the tumor during my lumpectomy. My surgery is scheduled for Monday so I am starting to have all of these same questions.
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If scans cannot detect lymph nodes swelling, but it's cancerous, then clinical stage won't fit in real pathologic stage. So, clinical stage may be IIB, but not detected, real pathologic stage is IIIC. However, the most important is pathologic stage after surgery. If patient doesn't achieve pCR, then residual disease volume and nodal status are the most relevant factors. pCR is no additional prognostic information in Luminal A and Luminal B (HER-2 positive). In TNBC aside from pCR, post-surgery tumor size seems to be important (ypT1/2 vs ypT3/4)
http://jco.ascopubs.org/content/30/15/1796.full
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Just chiming in: my BS and MO both told me that imaging - ultrasound, MRI - always underestimates the size of tumors. Also, after neoadjuvant chemo, all of my ten previously positive nodes looked clear, but in surgery showed two were still positive.
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pennsygal, I got the same information about MRI and other testing. I had the same response after neoadjuvant chemo. Previous nodes looked clear, but 5 still turned out positive at surgery. My husband's best friend is a gyne onc in Michigan, he always says, "all of the testing and imaging we can do is valuable, but the pathology is the gold standard and the last word."
The best we can do is Warrior On!
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Gohan, I wasn't staged pre-surgery. My biopsy showed poorly differentiated IDC with a Nottingham score of 8 (grade 3). The mammogram showed what appeared to be a 1.3 cm. tumor. The radiologist said, after the biopsy, "We have to do more work to figure out what stage we are." He recommended removal of the tumor and sampling of the lymph nodes, both of which were done in July during my BMX surgery.
Is it typical for a BC patient to be staged prior to surgery?
Genny, sorry to hear neoadjuvant chemo didn't work in your case. I've read so many stories here of amazing neoadjuvant responses that I've tended to believe it is always effective! You're so right about not having clearcut answers (but I want them anyway).
homeschool, I see you're dealing with the same staging uncertainty. I don't know why it matters to me, but I guess there's some sense of control in knowing where I stand (even if I can't control what happens from then on). Interesting that you're also receiving adjuvant Perjeta--that's unusual, from what I've read. My MO approved it for me, and I'm his first patient receiving Perjeta adjuvantly. I hope treatments are going well for you!
live_deliciously, you're right, anything is possible. My nodes had appeared unremarkable throughout the whole shebang until the BS got a close-up look at them during surgery.
Tectonic_shift, I wish there were a better way of determining cancer involvement in the nodes. Sorry to hear about your nodes.
Duzy, good luck with your surgery tomorrow, and I'll keep my fingers crossed for boring nodes!
pennsygal, I wasn't told about mammograms/sonos underestimating tumor size. I certainly wouldn't have imagined my tumor to be 400% larger than predicted!
JerseyGirl, Warrior On!
I appreciate everyone's insights--thanks!
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JenPam, I think so, especially when doctors plan neoadjuvant treatment. In my opinion doctor should know how much the disease is advanced (inoperable or potentially operable?). But as I said primary clinical stage has no impact on prognosis. It all depends on results of neoadjuvant systemic treatment.
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Just reading all of your posts, same thing happened here - I was staged before surgery, then after surgery discovered my tumor was 3x the size originally projected, and the DCIS is 2x the size originally projected after surgery. This was after two mammograms, three ultrasounds and an MRI. They didn't see any node involvement until surgery, and all four nodes removed are positive. I meet with oncology this week locally, and get my second opinion next week. I can see how they might underestimate the size, but it just seems so drastic to go from less than 1 cm to almost 3 cm. My fear is well, are other nodes affected? How can I tell? Will they be removed? I only had a lumpectomy a few weeks ago (remember, it was initially less than one cm!) but it didn't produce clear margins, so I'm going to need surgery again anyway. I'm nervous about treatment, but I feel like the last two months or so have been such a roller coaster of emotion and information I want to get this show on the road. I feel like I'm in breast cancer limbo.
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fightergirl, I see you were originally diagnosed as stage I. I'm sorry you received bad news but can empathize with you. Even though I was never staged pre-surgery, I imagine I'd have been considered stage IA, since my doctors thought I was T1, N0, M0. Instead, I turned out to be T3, N3, M0--stage IIIC. Are you considering a mastectomy? I imagine your surgeon will want to remove all of your sentinel nodes on the affected side, if she hasn't already done so, and then will take axillary nodes for testing as needed. Please keep us posted!
I found this interesting (from breastcancer.org):
An important point some people have trouble understanding is that the stage of a cancer is determined only when (or soon after) the cancer is diagnosed. This stage does not change over time, even if the cancer shrinks, grows, spreads, or comes back after treatment. The cancer is still referred to by the stage it was given when it was first found and diagnosed, although information about the current extent of the cancer is added (and of course, the treatment is adjusted as needed).
For example, let's say a woman is first diagnosed with stage II breast cancer. The cancer goes away with treatment, but then it comes back and has spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones.
If the breast cancer did not go away with the original treatment and spread to the bones it would be called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it's not called a stage IV breast cancer. Stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed.
Here at BC.org, if someone's cancer metastasizes, she considers herself to be at stage IV. According to the guidelines noted above, she should consider herself to be her original stage "with spread to (site)." I realize it's only semantics, but it's thought-provoking. Based on those guidelines, the only stage IV patients are those who were diagnosed stage IV at the outset.
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I've heard it's related to cases when cancer is diagnosed with stage 4. Stage 4 can never be changed.
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I too was initially diagnosed as stage 2. No nodes according to a sentinal node biopsy and a 2cm IDC tumor at 11:00 and a 1 cm at 1:00. Talked mastectomy due to multifocal followed by tamoxifen. After BMX 3 of 14 nodes positive with 8 cm worth of tumors. 4 AC, 12 taxol, 37 rads and anastrozole. Still confounds me how far apart pathological staging was from clinical.
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Mine was the size of a tic-tac on ultrasound, with no palpable lymph node swelling. No one paid any attention to the umbrella of pink, orange-peel skin directly over the tic-tac, which turned out to be dermal lymphatic invasion. We all joked about passing around a bottle of tequila and using a melon baller to just scoop the tumor out of there.
Surprise! The sentinel node was so chock-full of cancer it couldn't absorb any tracer OR blue dye, so during the lumpectomy my surgeon had to grope around in my armpit until she felt something hard. The tumor was small, but it sure was on the move.
And here I am more than four years later, working full-time, healthy, playing with grandbabies. Yes, there's still an elephant in the room, but these days it's no longer sitting on my lap. God is good.0 -
JenPam - yes I'm considering a mastectomy, but chemo now first. Still waiting on genetic test results too for that decision. Today got my first opinion for treatment - recommendation was TCHP; the curveball (I was told) is that Perjeta is generally only administered BEFORE surgery to shrink tumors that are HER2 positive, and therefore, insurance may not cover it since I already had a lumpectomy. But I have seen posts here on breastcancer.org of women who have received Perjeta after lumpectomies, so I'm hoping it will work out. The hospital is looking into it. I've got everything scheduled, echocardiogram, metaport, etc. for next week, including first dose.
I do have a second opinion Monday at a MAJOR cancer center 1.5 hours away, which I may switch to. Credentials alone - the oncologist assigned here manages more than just breast cancer. This second opinion ONLY manages breast care.
I need to go get my hair cut!
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Fightergirl, I am getting perjeta post mastectomy and insurance is covering it.
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Checking in. Just found this thread. I was thought to be stage II. My biopsy back in June showed 2 cm. Then an MRI showed 4 cm. I went in to sx on 8/6 thinking it's 4 cm. Turns out I had an odd ball shape of 4 cm but then a "line" leading to 3 cm so it was a 7 cm total dumbbell shaped. I had 4 nodes taken out, 2 of them sentinel, and micromets was found in a sentinel node. So it became 1 node involved. I completed AC 3 weeks ago (thank God) and last Tues had my first Taxotere of 4 which will be given every 3 weeks. So 2 more weeks of "bliss."
I had a chest xray among other tests before sx. It was clear. In Oct I had a CT scan. In my lung showed up a lung nodule and a spot on my pelvic bone. Fear struck since BC goes to liver, brain, lungs and bone. Bone scan a week later showed no metabolic activity. As for the lung, the nodule was too small for a PET scan to pick up on what it is so we wait. If after chemo it's still there then it's not mets. If it's gone then it could have been. No way of knowing because it could have been something else that just went away. This not knowing would drive me nuts so I hope it's still there after chemo.
Should be done with chemo March 1, last infusion. Then a break before 5-6 weeks of daily rads.
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hi artista. Hang in there. I had taxol after AC. It was way easier and I hope you find it easier too. then rads was way better than I thought. I really thought I'd get fried but that didn't happen so please don't be afraid and hollar if i can help. It will be all over soon
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^^^Thanks livedeliciously. Glad to here it went well for you!
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I'm new to here too. It's been about a week since my diagnosis. I'm trying to be positive but not always successful. I have two children & a husband. I'm terrified of chemo as I don't have a strong heart already. I've read some posts & it seems like the majority have continued medical issues after cancer free. That makes me nervous... I don't want a life that is fear & hospitals & drs. I want to deal with this. Get cancer free & move on. Is that possible or just a pipe dream???
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Axrescue - you are reading posts from survivors having continuing problems because this is a safe place for them. The BC survivors (a whole lot of people) that aren't having continuing problems are too busy with their lives to post here or have moved on. Many women do have continuing problems but most of them are manageable and much better the alternative. The fear slowly lessens and the Drs visits finally space out more. I have permanent neuropathy but it hasn't stopped me from quilting, seeing two grandsons born and my youngest DD get married. Life is going on. Have courage, cry and fight as best you can.
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azrescue. The initial first months were an emotional roller coaster for me. Its the fear of not knowing. There will be tough days and I'd be lying if I told you the dark cloud doesn't still loom for me on occasion. But its brief periods not days worth now. Most people will tell you only half the battle is physical and the other half is mental. BUT !!!!! You really can do this! I too was scared to death of chemo, then rads, then tomoxifen. It's a year of your life, but then we get to enjoy this precious life. On chemo There is a day or two at each cycle where I felt like crap but I've felt worse. I had 8 dose dense cycles so say 16 days of crap to help me live. It helped to acknowledge the chemo was my ally and kicking cancer to the curb. Take one medical phase at a time or it seems undoable. We are all here for you. Believe me this BCO site was my savior because no one gets it like those that have been through it. Make sure you get on the current thread of surgery then chemo thread etc to help you through that particular phase . hang in there ! and post whenever you need
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live deliciously..
This is great advice.
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I lost this thread but to update I had a lumpectomy back in July and they found my sentinel nodes had cancer cells and I did not have clear margins so my treatment was to have chemo 4 AC then 12 taxol (finished 10). Then I had a mastectomy and ALND in December. My pathology report came back with no sign of cancer in the tissue or any lymph nodes. I asked my PS if my staging would change and she said no it stays with the original diagnosis. So either I did not have any more lymph node involvement or the Chemo did its job and killed off the remaining cancer cells. Now it is on to radiation to finish any cells they missed.
Once treatment plans are in place take one step at a time and work through that before moving on to the next step. I found better to deal with in small junks instead of the big picture. Currently working on getting through radiation - one week down - 6 more to go.
As GraceB1 and Live_Deliciously said we can get through this and learn to enjoy every moment we have. There will be good and bad points but we have to keep moving and fighting.
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Hi Everyone,
I'm brand new. I was diagnosed on the 9th of February. I had a pea sized lump about a year ago, had a mammogram and sonogram and the doctors told me it was a cyst. I was told that unless it was uncomfortable I didn't need to have anything done to it. About 2 months ago, I noticed it had become quite large and thought it should be aspirated, so I went in for another mammo and sonogram. That became a biopsy, and now here I am. The oncologist told me I was a stageII-IIIa, but he thought I would eventually end up a Stage III. The tumor is a grade 3, and I'm positive for Estrogen, Progesterone, and HER2.
I'm so grateful there are women here who have navigated these waters and can guide the newbies. Thanks!
Tina
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humor, so sorry you have to be on this journey, but you won't find a more supportive group of people... check out the Triple Positive board, too... We're all here for each other!
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