Stage II w/Lymph Node Involvement
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Hi Melania - thanks for the reply - I feel like I am leaning towards chemo before surgery as I just want to get started, but I like the idea of getting mastectomy even if it shrinks as I am no longer so fond of my breast tissue
.....although I haven't really talked to an oncologist yet (hopefully Tuesday). Do you mind if I ask where you are being treated? I am in the Bay Area - have so far just seen a surgeon here in the East Bay but am sure there are experts at UCSF and/or Stanford - just not sure how to find them other than internet searches...is that how it usually works? Three-year olds are so fun!! My daughter (at 13) is becoming a teenager and although she's a great kid, I miss how much she used to chat and snuggle.
Hope you had a good Thanksgiving!
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Hi, I was diagnosed 10/13/10. I too find that waiting to get to see all the specialists has been a bit trying. I have had my lumpectomy on 10/28 and start chemo 12/02. My onchologist had to have back surgery unexpectedly, so I feel like I have gotten some of my info in bits and pieces. Stuff happens and I feel confident in her and just going into the recommended treatment. So much of the last month for me has been hurry up and wait.
I have a 15 year old and a thriteen year old. I am 48. I am missing when they were younger like you, dlcw! My kids are really good in general, but the temperments have changed! My son is still in a sweet stage,he is a little less snuggly, but he is chatty and sweet. My daughter has started to clam up a bit! My husband always thought I was moody... heehee!
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Hi dicw (and others)
Sorry to find you here but this is a great group. I have been a lurker and read, but don't usually post. But I find alot of support on bc.org. Anyway to answer your question, I had a "clean" mammo the year before my cancer was found. Don't know whether they missed something or whether it wasn't visible...I supposedly have a "slow" growing cancer.
I don't know the oncs in the Bay Area but you might want to start a separate thread and ask people. I noticed that someone did that for "New York" and received alot of good names. But you are in an area with great cancer centers and you will find someone good.
My daughters are 22 and 25 now...time flies. But I am closer to them than ever before...I always found each stage wonderful and interesting.
Take care.
Sending a big cyber hug.
Mandy
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Hi Donna, it's scary, especially at first, but it's all part of the diagnosis process to decide on the treatment that will be best for your particular case. I did surgery first (BMX), then chemo. But I had a friend who did chemo first, to shrink her tumor which was pretty large, then surgery (lump followed by rads). We both had 1 positive lymph node. Many oncs say chemo is a must with any positiive nodes; others say chemo isn't absolute in cases of 1 to 3 positive nodes; depends on the doctor.
I had positive mammo after having a clear one last year. I have dense breast tissue and they said my cancer was there, just wasn't large enough to be seen last year because of where it was in the breast and the denseness. Mammos aren't foolproof, unfortunately.
I also had biopsy, MRI and PET scans before my treatments started. Some docs don't go as far as the PET scans; mine did because they were looking at something that had shown up on an xray; turned out ok, thank goodness.
Hope this helps. Every case is different. It's important to find a doctor you trust and can communicate well with to decide on what is the best course of treatment for you. Come back often to this site for support and info. It is great.
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Hi All - ok - it's a big relief to know I'm not the only one that had a clear mammo and then a bad one the next year - I was feeling like that was a very ominous sign (although I feel like every twinge or pain I have these days must be an ominous sign of other tumors....). Will be much better I'm sure after the PET scan and knowing for sure how far it's gotten.
LadyinBama - I grew up there in NW AL (small community with one 4-way stop called Natural Bridge), went to undergrad at Tuscaloosa - Auburn is having a good year (I don't really follow football that much but have some obnoxious cousins that went to Auburn and keep me apprised via email).
I am feeling optimistic today, mostly I think becuase I see the surgeon and get the full pathology report - looking forward to some concrete information and planning the next steps.
Thanks all,
Donna
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I had a diagnostic mammogram and ultrasound in Feb 2010 that revealed nothing. In Sep of this year, the same fatty lump they were checking out felt "different" so I went back to my primary care. Cut to the chase, and this time the lump (not the benign one I felt, the new one behind it....) was visible on both mammo and ultrasound. It freaked me out that within seven months I could find a new lump and that it was around 2cm, even though grade 1 on biopsy, grade 2 on pathology from my BMX. The doctor's assured me that was positive.... that it hadn't been big enough to see on previous scans.
I did have just one positive node, the sentinel node, ancillary nodes were clear. I'm thankful that I didn't wait until my next mammo, which was tempting, since it was the same lump that just felt different.
Hope this helps.
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Dear dlcw ,
I live in California and I am going to Cedar Sinain cancer center in Beverly Hills .
Even though my tumor was 2.7 My onc not only ordered a pet scan at Dx but a whole body Cat scan, Bone scan and guess what ??? Brain MRI to rule out the cancer is no where else . I was scared to death but it all happened in 2 days and i got all the result the same days and they were clear except the pet scan which showed 3 lymph nodes which at that time I jumped from the happiness because i was just praying its nowhere else except that area !!! LOL !
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dlcw: I'm from Bham, moved to Huntsville last summer (Aug. 2009). I'm a HUGE Auburn fan (hopefully not an obnoxious one
We are one game away from playing for the national championship. I can't believe it. War Eagle!! Let us all know how your doctor's visit went today. Also, when you are new to the forum, you are limited to 5 posts per day. But if you have more questions you want to ask any one of us, you can send us a PM, those are unlimited. Hope all went well today.0 -
Well - so much for my optimism. Today, unfortunately, sucked. I met with the surgeon and got the pathology report - I am triple negative. She said she wasn't surprised given the size of my tumor and how quickly it had grown. For some reason that little tidbit of info has hit me way harder than anything else - frankly it feels like I've been given a death sentence - I realize that's not completely rationale but can't seem to get a grip. I feel a bit frantic, and am having little mini anxiety attacks where my heart starts to race. Perhaps time to ask for a prescription?
I have my MRI tomorrow and the PET scan on Wednesday morning - so hopefully by the end of the week I'll have a complete picture of how far it's gotten and can make a plan. I still don't have an oncology appointment but am hoping to get them on the phone tomorrow - my surgeon was going to call the oncologist and ask her to fit me in asap. Planning to feed the kids, get them in bed, and begin educating myself on treatment protocols for triple negative. Now I just hope it's still only local (breast and lymph nodes). That would finally be a bit of good news!
ladyinbama - Huntsville is a nice town - I have relatives there. I'm sure YOU are not an obnoxious fan like my cousins! Their obnoxiousness stems mostly from the emails they send gloating when Alabama loses. I hope Auburn makes it to the national champ game - would be nice to have it stay in the state, even if it's not Bama.
melania - thanks for the info - I am up north so still looking for the final onc and treatment center. Going to see the local onc asap but am also checking into Stanford and UCSF. I think if my surgeon had ordered more than the breast MRI and base-of-skull to knee PET scan I wouldn't have been able to get out of her office without breaking down.
Lisamomoffour - so you were NOT triple negative and yours still came on quickly. Maybe that means I'm putting too much emphasis on the relative aggressiveness of triple negative - did your doc give you any insight into how often that happens? Right now I feel like being positive for something that would offer more drug options would be a blessing (funny what you find yourself wishing for isn't it?).
Anyway - thanks again to everyone for responding - off to research.
Donna
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Donna -- sorry you didn't get better news. This part really sucks, no way around it. I will tell you after having been the kind of person who gets through stressful times with strength, I find this experience to be unbelievably difficult, and asked my primary care physician for xanax, which she happily prescribed (I hadn't seen her in several months... she too is going through breast cancer treatment, so she totally understood, how ironic is that?). It takes the edge off, but doesn't make me dopey. I am hoping that once I get further into the treatment phase, I can leave that little habit behind.
As far as insight... got a couple of conflicting messages here. The oncologist thought it was there, just not accessible and viewable, that certainly didn't make me feel any better. The breast surgeon thought we just might never know why it grew so quickly, just a mystery. All I can speculate is that since my tumor is 90% estrogen, and I'm carrying some extra pounds (or I was..... I dropped 30 pounds since diagnosis due to stress) that I was producing an excess of estrogen? Who knows? I've sort of resigned myself to not knowing, just dealing with the facts I have, to move forward. And to encourage every woman I know who hears that their breasts are "lumpy", or "dense" to insist on an MRI in addition to a mammogram.
Sending you good thoughts!
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Donna - sorry about your news. I agree with Lisa that you should do anything you need to to help you through this stressful time. I asked my onc for Ambien because I couldn't stay asleep for more than 1-2 hrs at a time. It was just so hard to turn off my thoughts and get some rest. I work full time, was in chemo and knew I needed help sleeping. I cut back my dose once I finished chemo but I still am taking it every night. I will try to go off it beginning in January.
Lisa - I had a similar situation. I've been prone to cysts all my life. 10/08 I had cyst aspiration and by 09/09 it was back. I thought I would just have it aspirated again but the tumor was behind it, close to my chest wall so it couldn't have been felt. I remember asking if the cyst I had aspirated was somehow hiding the tumor and it could have been detected a year earlier. They said no, it would have shown on the mammo or US I had. That was somewhat comforting.
I just had my annual mammo last week and haven't gotten the results back. I was very apprehensive about the pain, the deja vu, etc. I had the same tech I've had for several procedures and she's very kind and understood my anxiety. It did hurt, though. Gina
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Hi Ladies -
I don't post here much but check it out occasionally as I am Stage IIb.
Donna - sorry you had to join this club no one wants to be in, and I understand your distress about getting the news. It sometimes seems like every trip to the doc is a mixed bag.
Anyway, I wanted to let you know I'm being treated at UCSD in La Jolla, part of the UC system in California. If you can get to UCSF and your insurance will cover it, I wholeheartedly endorse the care I've received. (Although I imagine whatever Stanford has is quite elite as well.) I went to UCSD for a 2nd opinion after my first surgeon and oncologist told me I had to have a mastectomy. My primary care doc told me it would be good to get a 2nd opinion, even if I ended up staying with my original surgeon/onco team. Well, when I met the surgeon at UCSD it was a no-brainer. She was very positive about preserving as much of my own body as possible, which she did. She is also a very highly-regarded plastic surgeon so when I'm ready for reconstruction next summer I won't have to find another doc, and all my info is in the same system. I'm blessed to have excellent insurance through Aetna and feel very fortunate to be able to be treated there.
As for the mammo vs. MRI topic, well, my 3 cm tumor never showed on any mammo and wasn't really distinct on the MRI (which was not a breast coil-type MRI, but that's another story). Even once we knew where it was located, an ultrasound couldn't depict it either.
And yes, better life through pharmaceuticals is one of my mottos!! If you need help sleeping, calming down, whatever, take the meds. We need all the help we can get to deal with this beast.
Kathy
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Hello everyone, just saw this thread and since I fit the bill decided to join you. I just had my BMX with TEs inserted on Nov. 17. Then got word the night before Thanksgiving that 2/3 sentinel nodes were positive. Got my final pathology report yesterday and learned that two additional nodes, one axilla and one intramammary were also tested and were negative. So the only cancer they found were in the two known tumors found in my yearly mammogram (one DCIS the other 1.3cm IDC) and those two sentinel nodes. Everything else was clean and no lymph-vascular invasion.
So now I need to decide whether to have additional nodes removed and whether or not to do radiation. I am in the grey are for radiaion therapy. Both tumors were located in the upper outer quandrant, not near my chest wall. I will definitely be doing chemo and hormone therapy, delaying the reconstruction until after chemo (and radiation if I have it). If any of you have any experience with these areas of additional lymph node removal and being the grey area of radiation I would be very appreciative of you input.
I also live in CA and am being treated through the UC medical system and am very impressed with it so far.
You ladies are so informative and caring it is just so amazing and comforting that this community exists. I wish it didn't, but grateful that it does. You are all very inspiring with your postings.
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Hi ProudMom_Wife - welcome to the club no one wants to be in. But you're in the right place!!
Your situation is similar to mine, except my sentinel nodes were negative on initial look in the OR, but further analysis in the lab showed a micromet in one node. I had the ALND to determine if there was further spread, and thankfully all 16 of those nodes were negative. I asked my onco about the Oncotype diagnostic test, and he said he would be willing to order it but the decision on whether or not to do chemo would be totally on me. So even though it was a micromet (1.5mm) he treats it as node-positive, and I wanted to use all the treatments available, therefore I skipped the Oncotype test and did 4 rounds of AC chemo, and will have radiation start soon. HOWEVER, I only had a partial mastectomy (or lumpectomy removing half my breast, whichever way you wanna call it), and no reconstruction (yet). I have read that having the tissue expanders in may affect whether radiation is a good idea or not. I'm sure others will chime in and give you more details on that particular aspect.
My onco explained it this way - having micromets in one sentinel node was an indication that the cancer was able to travel from its origin to a sentinel node, AND learned how to duplicate itself there (even though on a very tiny scale). If it could do that, then chemo would give me a better chance of non-recurrence. Radiation reduces the chances by another 50%, so I'll be doing that too.
So I guess the bottom line is - if you're willing to do chemo anyway, would having the ALND change your mind? OR, does your onco want to know about the additional nodes in order to determine the appropriate treatment regimen?
I know, lots of if/then/what-if scenarios. I'm just not sure about the radiation issue with tissue expanders.
Kathy
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Hi All - thanks for the info re: medications. I am calmer today - had my MRI and will have the PET tomorrow. Got an appointment with the onc here for Friday and am arranging a referral for a second opinion at the UCSF Cancer Center. So, trying to focus on just moving forward and at least it feels like I'm DOING something by getting the scans out of the way. Hoping for good PET results and then will be ready to finalize a plan - leaning towards neoadjuvant but waiting to see what the oncs say.
Best to you all - Donna
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Thank you MrsNice. I am definitely doing chemo. The ALDN is to figure out whether or not I should do radiation since I am in the grey area with only two positive lymph nodes, and everything else is clean. I am hoping to have a PET and Bone scan soon to help make the decision. I will ask to see if they would do the Oncotype test even though I have two positive nodes, because if the chance of recurrance is low, then I don't know if it is worth having radiation. I also will be meeting with the PS to find out the impact of radiation and the TEs.
dlcw - UCSF Cancer Center is an excellent facility, several friends have gone there for both treatment and second opinions and I have heard only positive comments about their experiences there.
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Got my second oncology opinion last night, and it was very confusing. My initial oncologist recommends skipping PET/bone/CAT scans as the risk of finding something is so low, it's not worth the additional radiation exposure, and I could feel confident that I am truly stage II. I had only one positive sentinel node.
Second opinion oncologist insists on a bone scan and abdominal CAT scan to rule out anything metastatic, and that has thrown me into a tailspin. I know many of us with a positive lymph node are enduring additional testing, but honestly not sure how I'm going to get through it.
First oncologist indicated that if we did find any spread of cancer, she wouldn't change the treatment protocol by all that much. The second oncologist indicates that we would skip chemo altogether.
Anyone else have such divergent opinions from different oncologists? Are all of you getting bone and CAT scans?
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Hi Lisa--When I was first diagnosed my Medical Oncologist did not recommend any additional scans and just scheduled chemo. When I met with Radiation Oncologist--just before I started chemo--he recommended bone scan/chest xray/ultrasound. I did them and gosh, I was so nervous about the bone scan as I thought every rib pain was cancer. It didn't show anything and my Medical Oncologist thinks that it was too much to have the scans done as like your doctor said, even if they find mets--they probably won't change the current protocol as it is. I did the scans because RO recommended them--I'm not sure that I know how you get through scans etc in future without being worried--haven't accomplished that yet.
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hello lisamomoffour,
My oncologist did not want me to have extra radiation (and worry) so we skipped on the scans. He thought that with only one positive sentinel node the scans probably would not show anything. I often wonder if I should have had them done.
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I'm not stage 2, but my onc said the same thing--that the possibility of mets found (she said even if there were there, the probablility of them being microscopic and not even seen on a scan was large) was so low, that she doesn't recommend scans in stage 1 and 2 bc's unless there is a lot of vascular invasion noted or lots of nodes involved. In my case (HER2+) the same treatment is given for stages 1, 2, and 3, so it wouldn't have changed anything anyways. But yeah, I worry all the time that maybe I was stage 4 at diagnosis and just didn't know it.
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My med onc said the same - scans not needed because I am "early stage." She even went so far as to say that when my treatment was over (now) I should live my life as if I am cured. She used the word CURED. However, I can never shake the feeling that I may be sitting here Stage IV and I just don't know it.
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After finishing chemo, my med oncologist said same thing--no scans---just "go forward and live your life"--not sure how to do that yet....but hopefully that will come with time. It does feel weird to be done and have no scans etc. My doc also said that if there are mets--doesn't change protocol. Again, the med oncologist thought the rad onc was going overboard with the scans but I did them.
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At my diagnosis, my BS ordered a bone scan just because I was complaining of a persistent neck pain that wouldn't go away. Thankfully it was negative. When I met with my med onc she immediately ordered CT of the chest/abd/pelvis for staging, there was no question of it. I asked about a PET and she told me that if something suspicious showed up on the CT's then she will order the PET. Thankfully again everything was negative.
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I am a 6 year survivor of Stage 2B er/pr/her2+++ BC as of yesterday!!! WOOOHOOOIIII
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Congratulations Sockermom4force!!!
I hope I will be in the sama place as you, one day!!
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Congrats Soccermomofforce! That is awesome! Happy Dance for you!
Tori
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Congrats SoccerMom -- great news and so encouraging to have you posting here about it! Thank you!
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CONGRATULATIONS SOCCERMOM!!! So glad for you to celebrate!!
We all look forward to those milestones in the future . . . 6 years from now my DD will be in college, my DS out of college and on to "real life" - can't wait to watch them go through it all!!
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Woo hoo, congrats, Soccermom!!!!
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Way to go Soccermom! Congrats and wishing you many many many more good milestones!!!!
((((((((hugs)))))))))))
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