New primary (or, here we go again!)
Just passed my 4-year Cancerversary in November. Found a lump near my previous lx, thought it was a cyst so I waited a while to see the surgeon. US came back Birads 4c, had biopsy on Wednesday. Path was done last night but my surgeon and oncologist don't work weekends - but my GP does. 😉 Picked up report this morning and it's not very straight-forward:
ER-/PR-, Her2 pending. Path report states "rare invasive ductal carcinoma. These core biopsies contain rare infiltrating irregular glands with amphophilic cytoplasm and enlarged hyperchromatic nuclei."
All I understand in that is that it's IDC, possibly TN, and not a recurrence but rather a new primary (different from my first cancer). Will know more on Monday when my Onc calls to give me the news.
Well crap.
(Edited to remove my uneducated guess that the weird words in my path report pointed to a diagnosis of metaplastic BC. Because I'm not a doctor, nor do I play one on TV)
Comments
-
Nancy, I am so sorry. But what makes you think it is metaplastic? There are a couple other rare idc cancer types it could be. They probably can't confirm the type yet.
Have you been doing MRIs once a year along with mammograms? Hope you get better news Monday.
-
Nancy, I am so sorry.My thoughts are with you.
-
Nancy so sorry, remain strong.....
-
I'm sorry Nancy....i can relate to you....
I was also diagnosed with a new primary after 10 years.....
I wish you peace.....I know you can do this...
Please PM me if you need to talk...will be thinking of you.....
Sheila
-
Oh Nancy. That is terrible news. I'm so sorry. It just sucks. We're here for you sister.
-
You are all so kind - thank you for the support and generosity of spirit. It sucks, no doubt about it. But I'm counting on catching it early, and hoping for node-negative status. It's so interesting how different this cancer is from my first ER+/PR-, Ki-67 of 50%, this one is ER- and Ki-67 of 10%. Just - very different. And yet, almost in the same spot as my first, so hit with whole breast radiation as well as targeted boosts. And survived. And thrived. And.......I don't know enough yet to be helpful, just enough to be dangerous.
Meow, I hit upon metaplastic because of the odd description of the cytoplasm and nuclei. As Isaid, it's just a guess; I'll know more on Monday (I hope), and perhaps it's nothing. These were core biopsy samples, I expect I may have to wait until lumpectomy to know final path details.
-
Update from surgeon this morning. He's not phased by the fancy words in my path report so I have garden-variety ER-/PR-. Hope to know Her2 status by Friday, said if it's positive I'd likely get neoadjuvant Perjeta with the Herceptin. He said he would have preferred a recurrence of my previous cancer to this new one, as my treatment options are limited (no chance of Tamoxifen or AI, no radiation). Was also very disturbed by the fact that he was in that very spot a couple of years ago removing a cyst and didn't see anything. Indicated an mx would be the best course of action.
My parents are in failing health, and now is not a good time for me to be out of commission with an mx. I asked about doing an lx with SNB and a port at the same time, then chemo, then an mx in the summer. He didn't seem to think that was unreasonable. He'll bring this "interesting and unique" case to the tumor board on Wednesday.
I meet with the oncologist tomorrow and will get chemo recommendations. And then hopefully a plan will start to come together. I am ready for action!!!
-
Nancy - Glad you are making progress. Sorry you are dealing with this and aging parents. Too much! How ER pos were you before? So wierd that it switched to neg this time. Sneaky bastards.
-
Nancy, if this is her+ you'll get the herceptin and have a good chance of zapping it. As far as the mx it didn't take me too long to recover from. Also getting the pathology after the mx gave me information I would not have had if I did the lumpectomy.
Even reconstruction isn't that bad, but it will probably keep you down at least a month. Also you won't be able to pick up things like a gallon of milk. I was thinking if your parents need that kind of help.
I had 2 tumors and a suspicious area. After mx they found the suspicious area was normal I could have had lumpectomy.
-
Farmerlucy, my hormone status was weird before (apparently, I'm just special in lots of ways). Original path was ER 50%, PR 10%, Her2 was equivocal so FSH determined Her2-. The Oncotype test changed my PR to negative, and gave me a scant ER positivity. My Oncologist NP said my tumor was likely heterogenous and that might have been a better picture of the overall makeup of the tumor.
So this path is ER 0% and PR 0%. My surgeon says there's no way it's the same cancer as before because there isn't any ER, but those were core samples, so I wonder what it would look like if they removed the entire tumor and retested it? (I'm grasping at straws here). Might mention that to Onc today.
The other thing that makes me sad right now is the surgeon indicated that they can try, but will probably fail, to be able to do an SNB given previous radiation (I guess the auxillary rads damages the ability for SNB). So they'll be doing a complete node dissection. Crap.
Thanks for the information on recovery, Meow. Yes, right now I just can't be un-abled or down with surgey and not able to move/lift anything, needing to help my parents. It's a terribly challenging situation with (and for) them, and while I have two sisters who are also helping, one lives in Alaska and won't be here for long, and the other is on the verge of getting married and moving away. Mom and dad can't really afford much outside help, so it falls to us to ensure their health and safety. Plus - I'm training for my first half marathon in May and I'd really like to do it (if possible) before surgery. And I teach yoga; I want to finish the winter/spring session, and maybe take the summer session off.
-
Hey Nancy. I wonder if info from the axillary node dissection will change your treatment plan. I had a SNB after an mx and only now do I know enough to have a tiny bit of skepticism about the results. My BS was a bit reluctant to even do any node biopsy since he felt there was little chance of node involvement based on MRI and no lvi. Congrats on the half marathon training, that is awesome.
Hang in there. We're hanging with you.
-
(((Nancy))) so sorry this beast blindsided you again - it seems like a sneaky one
Hopefully they get to the bottom of it soon so you know what you're facing. So tough to have your parents ill at a time like this when you need to take care of yourself...you're in my thoughts and prayers, hang in there...we're here for you and I'm not far away so PM if I can "listen" (((Hugs))) Maureen
-
I'm curious, Nancy, how they know it is a new primary. I can't remember how many articles I've read about breast cancer being a difficult one because of it's heterogeneity due to it's ability to mutate. I often wonder why my initial pathology scored so high on ER (IHC), but got such a low score in the ER category on the Oncotype score (PR was negligible on both). Did your MO explain how the pathologist knew?
-
Nancy, if you end up needing the ALND then I would suggest you go ahead and do a UMX to get it over with. My recovery from the ALND and LX was harder than my recovery from my UMX with TE. It is something to consider anyway because you won't be able to lift anything heavy after ALND anyway. I am very sorry you just got blindsided with another cancer diagnosis.
-
*blech* it's been a hell of a couple of days. My BS and I had created a plan that worked wonderfully for me with caring for my parents, my job, etc. - and my MO stomped his foot and said NO! Came away from my visit with the MO yesterday in tears and just totally over having cancer AGAIN (*frick*). However, after tumor board meeting today it was determined the tissue sample isn't big enough for Her2 testing, so we are now back on plan, with an excisional biopsy, SNB and port placement scheduled for the 15th. I'll have to wait to start chemo until the Her2 comes back but that's okay. I'm also eligible for BRCA testing now, so those results should be in in about 3 weeks. Things are coming together (even if it kinda sucks).
Quinn - nice to "see" you again *hug* my friend. Everything about this cancer is different than the first so they assume it's a new primary. They will be testing the excised tissue further, however, just to be certain.
Interestingly enough my MO needs to "add up the numbers" and wants to give me Adriamycin again. I thought I'd already had my lifetime dose but he thinks I could possibly still have more. Says is the best for TN (if that's what it is). I might want a second opinion on that.
Molly, my surgeon will attempt an SNB during the excisional biopsy. He says if he doesn't find a sentinal node then he won't do anything at that time, and he'll simply dissect all the nodes when I have the mastectomy. I don't like the idea of losing all my nodes, but I support I understand.
So much fun today - bone scan, US, blood work. CT scan next. Hoping to have everything firmed up next Tuesday!
-
Nancy I just wanted you to know that I read your posts and my heart goes out to you and I will be sending you good energy.
-
Nancy, maybe you SHOULD get a second opinion on the red devil stuff. That stuff is nasty.
-
Hi Nancy, sending you my best wishes. The second time is hard. I was diagnosed again after nearly 12 years. Apparently mine is a new tumour although in the same breast as before and similar characteristics. The difference for me is this time I found this website and am now much better informed about BC.
-
Nancy - a little confused about the "excisional biopsy." Same as a LX? So sorry you had such a tough day and are dealing with (too many?) things on so many fronts. Be kind to yourself as you must remember that cancer can be a full time job. I am really surprised you did not qualify for the brca test before, if only due to your age, even without a relative, though I barely qualified myself because my mother and two aunts all over 50 when dx'd (since found a 4th 1/2 sister aunt). I too wanted an LX first, though for different reasons, in the interim period between dx and brca results. I got the comment that insurance would frown upon that - doing LX first, then PBM and had to wait over 3 months from screening mammo to surgery - (holidays did not help). Had an interim SNB though. Cat Scan, but not PET for you???
I've always heard there is a lifetime max for Adriamyacin and I thought our 4 DD's were it. Have they changed the rules since 2012? If you are brca, please be aware of the possible success of carboplatin for BC in brca women too. As of 4 years ago, not protocol, but it was added to my regime at my teaching hospital. Not sure what has come of that. Just something to be aware of.
Sending you hugs and know I'm thinking of you....
-
Thank you all for your kind words. One of the reasons I keep coming back to BCO is the support and understanding for the curveballs life throws us.
Quinn, we're doing an excisional biopsy rather than a lumpectomy because we don't have the Her2 status yet. If positive the standard of care would be Perjeta pre-surgery - so a "lumpectomy" would negate the ability to use Perjeta. Additionally, everyone's opinion is there's no need to remove any more tissue than necessary at this point, when mx is the ultimate plan down the line.
University of Michigan called me and will work on setting up a day-long second opinion after the biopsy (so they have Her2 information), including new tests and consults with the BS and PS to discuss reconstuction (I will only consider DIEP at this point, otherwise I'll go flat). By the end of the day I would have a new plan in place. It's nice to have options - I like options.
-
Hi Nancy - I'm really glad you have access to such wonderful care.
It seems that DIEP has come a long way in a short period of time. Many more people are doing it now vs four years ago.
Thanks for keeping us updated.
-
Thanks Nancy for the update. For some reason I thought you wee in Tennesee? I can remember pathologies better, I guess.
Farmerlucy-in what way have DIEPs changed in last 4 years? Curious minds want to know. I'm ok with the implants, but they have shifted and hung up (non tech terms) over time. And then there is the issues of longevity.
-
Quinn, one thing I noticed is the stomach incision is much lower but still hip to hip.
-
I already have a hip-to-hip incision from a surgery when I was 18 (very large teratoma on one ovary). It's really quite beautiful and almost invisible now. But - kids and age have provided me with a perfect boob on my belly. :-) I don't want to lose any underlying muscle - yoga and running. I already know i don't want implants. I'd be happy (reasonably so, I guess) going flat, if necessary. Looking forward to talking with a PS so I know my options.
I know I'm lucky to have a great facility just down the road. I grew up in Ann Arbor and have much respect for the health system. My son is on the transplant list with UM and they're wonderful to work with.
-
Quinn - It just seems that so many more places are doing them. In 2012 my BS said I should either go to San Antonio or New Orleans if I wanted Diep. The travel and the need to stay nearby the surgery center for another 14 days convinced me to do implants, though I know flat would have been fine too. My family just couldn't understand why I would even think about no recon. I've learned that no option is perfect and we just move on.
Nancy - may I ask what your son is on the transplant list for? Goodness - one more burden for you to carry girl!
-
Nancy, my DIEP didn't involve any muscle at all. I love what my plastic surgeon did for me, I no longer feel deformed he really took away the emotional mastectomy pain for me.
I really wish I knew when I had the mastectomy how good a fix I could get. The emotional pain I felt was very devastating something my oncologist could care less about. Go see a counselor was his only advice.
I should add I swim, do the treadmill and yoga without problem.
-
Meow, bless you for sharing your experience. I'm not vain about my breasts, or even having them, rather I worry more about my long-term ability to do what I love (and what keeps me sane) - yoga and running (and hopefully more, not less, as I get older!) I felt very dismissed by my MO recently, and even my GP who questioned why I wouldn't consider implants ("you'd look great!" and "my mom has them and loves them"). I have sensory issues - cut the tags out of clothing and can't abide an underwire bra. I'm quite certain implants would make me crazy, and I don't care enough about my breasts to take that chance.
Lucy, my son is awaiting a kidney transplant. He went into sudden kidney failure at 15 (he's 30 now) from a childhood disease we never knew he had. He was able to stave off end-stage failure and dialysis until four years ago. As I sat in the infusion center getting chemo he texted me to tell me he was downstairs in the ER, having had a bloody nose for four days. His kidneys had finally failed and his BP was at stroke level. He started dialysis that same day. We joked about being "hooked up" at the same time and would text each other from our tethered chairs. We are working on locating a donor; his sister may be an option. I had hoped to be, but learned the week prior to my new dx that they wouldn't consider me until 10 years post initial dx. It's comical now; they were apologetic about the long timeframe since it was almost certain that I wouldn't recur given my initial diagnosis. So - we both have a different appreciation for life, I think.
-
I get it .....This breast cancer stuff sucks. At 42 diagnosed with LCIS, age 44 Atypical Ductal Hyperplasia and age 53 DCIS high grade necrosis. The findings among calcifications, very small and margins were clean during lumpectomy. My mom's mother died of breast cancer at 42 years old. My mom had I believe had DCIS at 73 years old with 35 sessions of radiation. Yikes! They said I would need 16. My BRACA was negative. But we all know this is not a profound result when negative. It could be that they just didn't find that particular gene yet. I originally started at NYU - wonderful doctors and was going for a bilateral mastectomy with DIEP Flap construction. Then I got some pressure about getting a second opinion and then went to Memorial Sloan Kettering who said I didn't need a bilateral mastectomy. I had gone for the assimilation for radiation. I have not had radiation yet. Diagnosis was on 10/28 and lumpectomy on 12/17. But really wondering if I made the right choice. I went from age 44 to getting Atypical Ductal Hyperplasia to DCIS high grade in 9 years. I feel like I am on a faster cycle in maybe developing invasive cancer. Losing my breast does seems devastating as well. I am a 40 DDD (in good shape) and I was told the best the plastic surgeon can give me is a C with my own skin and that sounded hesitated. On the other hand, I would be a real lousy patient if I got cancer. Both choices seem to stink. LOL. I wish there was some test that could determine your next possible reoccurrence. But I am asking for miracles. Signed... "Sitting on the fence!"
-
Nancy - I'm so sorry about your son's kidney issues. I hope a donor is located soon. My MIL passed suddenly in her fifties and was a donor for her kidneys. It was such a rewarding thing for our whole family. -
Whoo-hoo! Treatment plan! Met with surgeon and oncologist yesterday. Bone scan is clean (yea!); CT found an enlarged mediastinal lymph node. Everyone's "thoughtful" about it but it's not in an easy place to biopsy so we're just going to watch it for three months. I'll be doing neoadjuvant chemo so I'll be curious to see what happens.
Chemo starts in about three weeks (time to heal after Monday's surgery). Having an excisional biopsy to retest hormone receptors and get the Her2 status. Everyone wants to ensure they get the right area this time (my surgeon is going in from a really distant, odd angle so as to leave the scar in a place that will later be removed during mastectomy) so they've scheduled me for an US-guided wire placement. The radiologist (who did the previous biopsy) wants to be so certain that after the US placement, we're going to walk over to the mammogram machine and he may insert a second wire while I'm there. Seems like a lot of work to get this thing out but I'd rather be safe than sorry.
Once I have the Her2 status we'll know whether Perjeta and Herceptin are on the table. MX this summer, possibly BMX depending on results of genetic testing.
It feels good to be moving forward, even if just ever so slowly......
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team