Early Stage IDC - Multiple Questions
I'm newish here. I'm still figuring things out. This site has been a great source of inspiration and information.
My MRI from Monday showed a new area to have diag mammogram and US so that will happen soon. I'm not too concerned. It's the same breast and I already know I have BC but it will influence my surgery choices so I understand the need. The original 4mm mass with surrounding 6.7 cm area of concern (suspected DCIS) is 9mm per the MRI and the 6.7 cm area that my BS expected to "light up" didn't light up at all. So now what was a pretty much guaranteed mastectomy could now be a lumpectomy...anyone with a similar experience with BS expecting a larger area on MRI and it not "lighting up"? She is going to take my case to the tumor board (they need a less ominous name IMO). Edit to say my other (left) breast showed all clear and nodes showed all clear on MRI.
Also I found out us well-endowed ladies don't get to spare our nipples with mastectomy. That was surprising to me...mind you I haven't been googling or digging around much...just going step by step. My BS wants me to meet with a plastic surgeon this within the next 2 weeks. I see the BS again in 2 weeks. Meanwhile, I feel like this BC is just growing like crazy....even though it probably is slow growing and I know in general these appointments are going pretty fast (just feels slow to my mind).
My other question running through my brain is how many people with early stage IDC decide to have chemo as possible prevention of future spread or recurrence. I'm 46 and otherwise healthy.
Added note that I had a complete hysterectomy (LAVH) 4 weeks ago completely unrelated to the BC. Thankfully, all of that pathology came up clear. I was given a shot of estrogen during the surgery that supposedly lasts 4 weeks. I think I'm experiences the beginning of surgically induced menopause this week such as mild headaches and skin breakouts. So while I didn't get dx of BC until after my hysterectomy, the BC was there pre-menopausal. I don't even know that that matters.
Any thoughts would be appreciated. Right now, I am grateful for the technology and for this site but I'm not feeling particularly positive yet...my head is just swimming.
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I'll just comment that MRIs are really reliable--in fact, my BS told me they have a 30% false positive rate. Also--my first lumpectomy was a large area--8cm x 6cm x 3cm, and certainly that side is smaller than the other (with the smaller lumpectomy) but I figured women are always lopsided anyway. You absolutely cannot tell with clothes on.
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Thank you for your reply!
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If the biopsy pathology is correct and it is Grade 1, then it is a relatively slow growing type. (grade 3 is the fastest growing, grade 1 the slowest). So at least you can relax a bit about this. This is urgent but not an emergency - you have time to get proper assessments and think about treatment and surgical choices. Tumor boards are a great resource for this type of situation. You might find you're a candidate for lumpectomy but with those, there is a possibility for a need for a re-excision. Otoh, it's way smaller surgery & faster recovery.
Re chemo, your MO will recommend it or not, based on final post surgical size and pathology, and the lymph node status. There is a genomic test called Oncotype (done on tumor tissue) which might further help your oncologist regarding a recommendation for chemo. Oncotype tries to assess the risk of a tumor recurrence and whether chemotherapy has more benefits than risk for a particular pt. Some tumors are very highly hormone responsive and the recommendation might be for hormone therapy only.
best wishes
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Thank you, moth. I've learned so much from you on here and have so much still to learn
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Jen it isn't uncommon for the different imaging modalities to show varying sizes of the tumor. I had dense breasts so my mass wasn't "seen" on mammography and ultrasound until we could pinpoint it with the MRI. Then MRI indicated my mass was about 50% larger than it wound up being on final pathology. So you truly won't know until the surgeon is in there.
Wishing you well on your surgery and outcome, hoping the pathology continues to correlate with your grade 1 (slow growing) biopsy diagnosis. Typically chemo is more effective if your cancer is quicker growing.
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Thank you for your thoughts. The MRI picked up a new spot not seen on mammogram, diag mammogram, or US so I go Tuesday for another diag mamm and US. It seems like it's going slow but I think I'm really lucky and things are moving very fast. Monday, I see a PS. Struggling with what to do as far as that goes....I figure I'll know a lot more after that appointment.
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I have pretty much the same diagnosis, just diagnosed in mid December. I'm electing to do lumpectomy with IORT which involves travelling out of state. I'm sure I will be advised to do hormonal therapy. I currently am taking a CBD FECO (full extract cannabis oil) I purchase from a dispensary, as there has been studies that CBD can help shut down the tumor hormone receptors. I'm also taking Turkey Tail and another mushroom supplement.
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Good info. Thank you!
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Hi Jen,
Pretty similar case here. I didn't have additional imaging. I had a "conglomorate" of tumors located behind my nipple. It showed in the mammogram and the dx USN. My BS recommended mastectomy, given the location and size of the tumor. He said I would be very unhappy with the results and reconstruction would be more difficult. I did lose my nipple and quite a bit of skin in the process to ensure wide margins.
Moth mentioned Oncotype. This test will be beneficial to help you and your MO decide the best course of treatment with regards to chemo. My score was only 4, so it was a definitive chemo Not Beneficial conclusion. Here is some information: About the Oncotype DX Breast Recurrence Test
I also had a hysterectomy, but they left my ovaries. Because I am still premenopausal at 51, I am taking Tamoxifen. AI is in my future, but how soon is still up in the air. I have handled T really well. /E are minimal and manageable. I am a crying angry mess right now, as I had to stop it for surgery end of January, I restarted about a week ago. I seem to recall this being an issue when I first started taking T, and it eventually calmed down.
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Thank you! When do we normally "meet" our oncologist? I'm going today for 2nd diag mamm for new spot seen on MRI and possibly ultrasound. I'm assuming I meet the oncologist AFTER surgery in my case. Everything is just a jumble in my mind. I should probably utilize the nurse navigator more. Just got EOB from Humana for my hyster and it shows that that whole procedure was out of network even though other stuff there in in network....I think I should get used to all this insurance BS now. I'm just glad I have it. If surgery is for some reason NOT covered at my hospital (even though biopsies are!), I need to know that before my mastectomy. After PS appt yesterday, I'm feeling more comfy with Unilateral Mastectomy in my case. It is so much. I admire you guys who are into your journey and handling it.
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Hi Jen,
I saw my oncologist after surgery. I, too, chose unilateral mastectomy. I'm a pros and cons list person. It is such an emotional journey, I needed to work from facts.
Best of luck on your upcoming tests. Keep us posted on your surgery date.
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Jen, when you see the MO largely depends on the diagnosis. If the diagnosis warrants consideration of chemo prior to surgery (often done for triple negative cancers and HER2+ cancers) and/or systemic imaging such as PET/CT scans (usually not done for early stage cancers), seeing an MO prior to surgery is crucial.
A discussion with an MO can also be helpful for those who are uncertain about their surgery choice, whether a lumpectomy or mastectomy or BMX. The MO is the expert on future risk (recurrence or new primary) which for some is an important element in that decision.
For those who have small ER+/HER2+ cancers and who are comfortable with their surgery choice, there is no real need to speak to an MO prior to surgery. Like many early stagers, I did not speak to an MO until after my surgery.
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I chose and met with an MO immediately after the Mammo & ULS - even though it looked like my diagnosis was DCIS. He was the oncologist for my BFF who died of pancreatic cancer and he was marvelous. So I wanted him on board from the beginning - even though I did not have chemo or rads the first time.
Well, but then I had a local recurrence in a lymph node, And it had morphed into HER2+. And was SO glad he had been following me all along and advocating for me with the tumor boards - because I trusted him totally.
But then I also do lots of research before picking all my docs, so...
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I saw an oncologist before surgery. I'd actually been referred to her by my primary doctor because of iffy WBC counts and weight loss. In the meantime, I had the mammogram that led to other tests, so I rescheduled with the oncologist until we had all the facts. Then, once I saw her, she sent me for a non-contrast pre-op chest CT since I was a smoker, and that found an unrelated cancer... Quite an adventure!
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I also saw the MO (and the RO) before surgery. But that's the way my care team operates--they have you come in and meet them all one at a time and each one shares what will probably happen, assuming the pathology confirms their initial dx.
So it all depends on how your team works
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Thanks you guys! I appreciate all the feedback. Yesterday was frustrating. They couldn't find the new spot via mamm and US that lit up on mri....so I'm waiting to hear from my BS to see next steps. It's tempting to just whack the whole breast off but if my actual cancer area is only 4 to 8mm, that seems like overkill since all of my genetic testing came back negative. Also, the director of the cancer center here (and the doctor who performed my hysterectomy 5 weeks ago) passed away suddenly so the tumor board meeting set for today has been canceled....I tell myself that once in a while feeling sorry for myself is ok as long as I don't stay there for too long....I hear from you guys on here that things will get better and that this is the worst part. The difference between one area or two areas and a small cancer mass versus this 6.7 cm area is too much for my mind to process right now. We have to put a lot of trust in people who know better than we do (radiologists). Like I'm trusting them with my life....and I'm trusting that this has been caught early.....it's a lot of trust for someone like me....
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Is it true a PET scan is not normally done for early stage cancer? I've had two people ask me why the doctor is recommending chemo prior to doing a PET scan to see if it detects any cancer. I guess i'm interested to know why. Why would it not be done for early stage cancer?
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muffet - the national cancer clinical guidelines do not recommend full body ct or pet scans unless clinical signs of spread are found (so if blood work is wonky, persistent pain in some areas reported by patient, or swelling/tenderness elicited on physical exam). PET esp exposes the pt to a lot of radiation (way more than CT) and studies seem to indicate that extra scanning, in the absence of clinical suspicion for mets, just tends to lead to false positives & doesn't confer a survival advantage.
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muffet, take a read again through your original thread. The answer to the question you've been asked "I've had two people ask me why the doctor is recommending chemo prior to doing a PET scan to see if it detects any cancer" is there.
Topic: Should I get Chemo? https://community.breastcancer.org/forum/5/topics/...
Several of us explained to you why chemo is recommended for those who have aggressive diagnoses such as your own, even if there is no evidence that the cancer has spread. The reason for giving chemo to someone who is early stage is so that any rogue breast cancer cells in the body can be killed off before they become large enough to be found by a CT or PET scan. Once a full body scan finds something, the patient is already metastatic, i.e. Stage IV. Chemo is given to reduce the risk of that happening. So a PET scan finding isn't relevant to the chemo decision - and the hope is always that the PET scan finds nothing. But that won't change whether chemo is recommended. If the cancer is aggressive (and yours is) and therefore presents a significant enough risk that some rogue cancer cells might be hiding out in the body, then chemo is recommended.
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I'm ba-ack....learning learning. I'm getting a 2nd BS opinion this Friday so now I'm about 5 weeks out from dx....Seems like 3 months. My current BS says that because genetic testing was negative, my non-cancer breast remains average risk for breast cancer. Do y'all agree? Can you point me to the best place to dig into that? Would it be good to talk to an MO before surgery? Also,can y'all see my signature? 😐
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Do those of you who had a lumpectomy sorry about recurrence in that breast?
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JenCanDoThis
I'm assuming you meant worry? I had a lumpectomy, and I don't particularly worry. But I'm not too much of a worrier anyway. 😏 And even with a mastectomy, a person can have a recurrence. Lumpectomy + radiation is supposed to be about the same as a mastectomy regarding local recurrence risks. I did have some discomfort and bumpiness in the same breast about a year after the lumpectomy, and my oncologist felt the physical part. But it turned out to be scar tissue gravitating to the lower part of my breast. So if I do get a twinge now, that's where my mind goes first: scar tissue.
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"My current BS says that because genetic testing was negative, my non-cancer breast remains average risk for breast cancer. Do y'all agree?"
No, unfortunately I don't believe that to be true. The risk of a second cancer is higher for those who had a first cancer that is hormone negative, but for any of us diagnosed one time, our risk of a second primary is higher than average.
Second Primary Breast Cancer Occurrence According to Hormone Receptor Status https://www.ncbi.nlm.nih.gov/pmc/articles/PMC27209...
The analysis was based on 4927 women with contralateral second primary breast cancer. Of these, 3701 had a first HR-positive tumor and 1226 had a first HR-negative tumor. The risk of a new contralateral primary breast cancer among women who had a breast cancer of any HR status was more than two fold (SIR = 2.46, 95% CI = 2.40 to 2.52) that of the general population.
For women with a first HR-positive breast cancer, risks of an HR-positive and an HR-negative second tumor were similar, and the average risk of developing a second tumor was approximately double the risk of a first primary breast cancer in an unaffected woman.
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Contralateral breast cancer risk according to first breast cancer characteristics among United States women from 1992 to 2015. https://ascopubs.org/doi/abs/10.1200/JCO.2019.37.1...
Although CBC risk is declining in the US from 1992-2015, survivors have approximately twice the risk of an incident breast cancer (in the contralateral breast) compared to the general population.
Of course, the risk of not developing a second/contralateral breast cancer is still a lot higher than the risk of being diagnosed again.
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AliceBastable, yes worry.....I'm a worrier. Thank you for your feedback.
Beesie, I knew you would have a link! And the fact that my breast surgeon doesn't know what I have read on here is upsetting. I am glad to have a 2nd opinion day after tomorrow with the only actual breast cancer specialist is my city (Savannah, GA). The tumor board reviewed my case this morning and my current breast surgeon called me to tell me that the consensus was that it was a patient driven decision and that if I want to go the route of lumpectomy, I need to have 2 more biopsies - one of the new spot that lit up on MRI and one on the 6.7 cm area that has calcifications. She thinks I will be better off with a mastectomy (emotionally - as far as not worrying about this busy boob). My other breast has never had any issues and is more fatty so I feel like at least it will be easier to monitor.
Thank you both so much! This is difficult. Today is 6 weeks from my total hysterectomy at 46 so my hormones aren't helping I don't think...
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I can confirm what Beesie said. In 2010 I had a small ER-PR-HER2+ and ER+PR+HER2- invasion. The oncologist described it as a sheet of cancerous cells.
I don't think you really know what you are dealing with until after the surgery. Pre-MX, I was told I had a small DCIS. Oops!
Because the preliminary diagnosis was so benign (relatively), I elected a single MX. Because of the HER2+ factor, which was not discovered until after surgery, I had chemo with Herceptin (for the HER2+ bits) and Tamoxifin (for the ER+ bits). Beesie talked me into it so listen to her. I kept my hair with cold caps -- SO worth it.
You probably have guessed where this is headed . . .
In 2020, I was diagnosed with cancer in my contralateral breast. Because it actually was DCIS, they did no ER/PR/HER2 analysis. Makes no sense to me but what are you going to do?
My genetic testing came back negative, twice.
Over 2020, I had four surgeries to remove the offending breast and reconstruct both of them so they looked like they are supposed to match (FAIL). Because I am ten years older, the recovery was substantially harder.
When I was diagnosed in 2010, my oncologist *guaranteed* me I wouldn't get it in the other breast. Ha.
Turns out your chances of getting it in the other one are much higher than I was told. This caused me to blow off the mammogram for the remaining breast for a few years. Don't do that.
Net/net -- you aren't going to really know what you have until after the surgery and if it were me, I'd go for the BMX. Also, make sure you understand how your pathology report will be handled -- will only one pathologist look at it or do all cases get several looks? i wanted to hire a pathologist to do further analysis on the second cancer but apparently that's not a thing.
Hugs to you. This is hard. It is a lot. Listen to Beesie.
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JenCanDoThis, just remember getting a doublemastectomy instead of lumpectomy is no guarantee to not get a recurrence, or even new cancer. It is impossible to remove every last shred of breast tissue.
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Thank you so much for the info!! I think I am settled on the UMX but I cannot get myself to the BMX point yet. I just feel like with all that I'm processing with surgical menopause too, I don't want to overreact. I love my breasts and will be vigilant with the one that I keep and who knows...by the time I am ready for lift/reduction on the other breast to "match" the reconstructed breast, maybe I will go ahead and get the other side removed too. I'd rather not regret a BMX now and know that I can do it later. I started off with "take 'em both" but now I don't know. I am glad to get the second opinion Friday. I will update y'all then. I really appreciate your time. I'm a single gal so you guys have been a wonderful sounding board. I'm learning so much. Grateful.
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MelissaDallas, thank you for that reminder. I am less worried about recurrence (hence why I am ok with UMX and was even leaning to lumpectomy) and more worried about spread so I am definitely interested in meeting with the oncologist after (or before) surgery to talk about after surgery treatments. I am in surgical menopause so assuming I don't need chemo (that could change, I know), I'm not sure if I will do Tamoxifen and an AI or what. I am still learning about that. I work full time and am trying to do a lot of self care and not drive myself crazy, so my researching has been limited to here pretty much. I am staying away from Dr. Google and just taking it a day at a time. Seems to be keeping me sane right now.
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I tolerated Tamoxifen no problem. People are all over the board on this. Some can’t tolerate it at all. You might want to try it and see if it bothers you.
I understand about the UMX — I had to be talked into even doing that. Make sure you like your surgeon. I didn’t like mine (although she was “the best”) so I didn’t trust her 100% when she said chemotherapy. I LOVED my oncologist but feel she lead me astray. Flip that for the second round. Plastic surgeons were fine if you don’t consider the outcome — which may be as good as it gets. I have no way to know.
I should have taken the time to make sure I trusted my team but there’s a good bit of panic involved in a cancer diagnosis and I had to consider the schedules of my post surgical care team plus I’m a “get it over with” kind of chick.
Hugs. This is hard. You’ll do good.
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Thanks! Tomorrow morning I have my second opinion BS appt....so I think that will set me on the right course from what I've heard around town.
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