Invasive Ductal Carcinoma
A bit of background history, I had a lumpectomy on the left breast last year, 6 o'clock location. It turned out to be cancer free, ADH was discovered. Both my mom and my sister have had breast cancer. I started taking Tamoxifen.
I was recently diagnosed with INVASIVE DUCTAL CARCINOMA with tubular features and the following additional features: Nottingham histologic grade: Grade 1 (total score 3/9). Tubule formation: 1. Nuclear grade: 1. Mitotic rate: 1
I was told that there are 2 small areas (4mm and 3 mm) near 10 o'clock on the left breast. I have only had one dr's opinion (not sure if I should get a second opinion). She wants to do a lumpectomy, followed by radiation. She asked if I was interested in oncoplasty, as my right breast is larger than the left. This would require surgery on both breasts, which I'm not sure if I want to go through. Why do surgery on a breast that has nothing wrong with it?! Why should I more than double my recovery time - 2 weeks for the lumpectomy vs 4-5 weeks if I have plastic surgery?! I have a limited amount of sick leave available. My dr said that the right side would need to be reduced in size to better match my left breast. She also told me that radiation can reduce the size of the effected breast. I am not sure how much of an effect radiation has on reducing breast size. This worries me, as I don't want to end up being 2 completely different cup sizes. I am scheduled to see a plastic surgeon next week and am wondering what questions I should ask.
Comments
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If you would like to have even breasts, it would be worthwhile to have the breast reduction - but you could also put something (nice silicon part boobs are available) in your bra to even them out if you don't want the extra surgery. I wish I had had a reduction on my remaining breast after mastectomy. Unfortunately it is too late now ... Good luck !
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Mrsmcg - I had the opposite happen after radiation.... My affected breast is now larger than the other side. They were pretty much the same size before! I wouldn't rush into anything.
Best of luck!
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Hi Mrsmcg and welcome to Breastcancer.org,
We're so sorry to hear of your diagnosis, but we're really glad you found us. As you can already see, our Community is full of amazing members, always willing to help by sharing experiences, advice, and offering support.
In addition to the suggestions above and the others you're sure to receive, you may want to also check out the main Breastcancer.org site's page on Questions to Ask Your Surgeon About Breast Reconstruction for some good talking points to consider for your meeting next week.
We hope this helps and look forward to hearing more from you soon!
--The Mods
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I think I'd want to ask about the risks of the procedure. One big issue that comes to mind is that it seems to me there will be some internal scarring from the reduction in the currently unaffected breast and that might make future breast self exams & mammograms trickier.
My thinking is more in line with where you said 'why operate on a healthy breast'. For me, I would not bother with it for purely cosmetic reasons but this is obviously a deeply personal decision.And echoing the post above, I've also read that women have differing responses to radiation so I don't know if it makes sense to try to match now. That is another question to ask the ps I guess - what is optimal timing of this procedure?
You didn't mention if you had genetic testing done? That's one thing I'd consider if you haven't as some results might lead you to a prophylactic mastectomy instead.
I would also ask your oncologist if you qualify for oncotype testing for your tumor to determine risk of recurrence.
best wishes - it's stressful figuring all this stuff out. My inclination has been to focus on the disease and preventing recurrence and deal with cosmetic issues later but there's no one way of doing it so take the time to think about what's important to you -
have you had an mri to ensure nothing is going on in the “healthy breast”? If not, that would be a good thing to do as it may sway you in one direction or the other. MRI picks up more than mammograms.
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I asked my dr about the BRAC testing, and she didn't think I need to have it. I also asked her about the Oncotype testing, and she didn't think that I needed to have that either.
The MRI was done on both sides.
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Why does she think you don't need the Oncotype? Grade and Oncotype score don't always correlate.
I would get a second opinion and quickly- after you have pathology results from the surgery.
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to me it's a bit odd to go to the extent of putting someone on tamoxifen - a medication with its own risk profile, unless you know that the person is at significant risk of developing bc. You either have a genetic risk or you don't - finding out for sure would make sense to me.
There's a link to a hereditary cancer quiz on the Myriad page which might be helpful to you in terms of assessing whether you want to purse the test. Myriad can work with your insurance co - they have a separate site on arranging funding for it. https://myriad.com/products-services/hereditary-ca...
Is your tumor ER+ & HER2- ?
You can see the criteria for oncotype dx here. It does need to be ER+ and HER 2- http://www.oncotypeiq.com/en-US/breast-cancer/heal... -
Mrs MCG - sorry that you're here. I will add my two cents. I would ask your breast surgeon for a prediction of what your left breast will look like after a second lumpectomy in a different quadrant than the first. My initial diagnosis was IDC and lumpectomy was the recommended path. My breast surgeon ordered MRIs of both breasts to make sure we knew what we had. Found a couple of spots of ILC in a different quadrant of the breast. Lumpectomies in two different spots were going to result in a disfigured breast. I had a mastectomy with tissue expander placed.
My plastic surgeon did not want to do final reconstruction (implant or flap) until AFTER radiation and subsequent healing. Radiation was tough for me and my breast was pretty beat up.
There is no rush to make your reconstruction plans.
Since you're seeing the plastic surgeon next week, ask about what two lumpectomies will do to your breast and what he/she can do to mend. You can schedule surgeries as far apart as you need to as you mentioned time off of work. No need to make short term decisions for something that will affect you for the rest of your life. I don't know your age but don't underestimate the emotional aspect of how you look. I lost my hair with chemo but oddly, no pubic hair (which no one else knew about) was more unsettling for me.
Good luck
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I’d love to know why the doc thinks you don’t need the genetic testing done. That’s crazy (just my opinion)! If results of genetic test is positive then your treatment plan may very well change significantly vs if it is negative. I second getting another opinion.
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Hi Mrsmcg. My situation was quite similar to yours and I was happy with my lumpectomy. I had two small tumors -- 4 mm and 7 mm. Had a lumpectomy and radiation and all went well, so from my perspective your lumpectomy plan sounds right. I also agree with you that you shouldn't rush into touching the other breast now. After radiation I am still a bit larger/puffy, and my RO said in a few months I may be slightly smaller/perkier. So why not wait til that all calms down and you see how you feel?
I also hear you on the limited sick days. I took only three days off for the lumpectomy and was ok to drive and return to work; was just a little bruised.
If you are worried about the cosmetic outcome of the lumpectomy, you might see if there's a surgeon in your area who uses the biozorb device - but - those masses are small and the odds of ending up with two different cup sizes are pretty small. And so great that your Nottingham score is so low.
Let me know if I can help at all!
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I am at a significant high risk - I have ADH in the left breast. I had a lumpectomy last year to remove this area and have it tested to confirm if there was cancer. None was found. My mom had breast cancer at 62 and my sister had breast cancer (DCIS) at 53. She ended up having a mastectomy. I am 52, and will be 53 next month. My sister had genetic testing, which is why my breast surgeon doesn't think it is necessary for me to have BRAC testing.
The biopsy results stated:
ER: POSITIVE (100%, strong intensity).
PR: POSITIVE (75%, strong intensity).
HER2 (by immunohistochemistry): NEGATIVE (ASCO/CAP score 1+)I am perimenopausal.
Today I found out that there is a second mildly suspicious area 6mm posterior to the 4mm area with IDC. For some reason this second area was no biopsied. I asked my cancer dr. about this and she stated that she isn't a radiologist, but that Ishe thinks they felt if the first area was benign then the other area would be benign as well!! What sort of logic is that?! What if the area they biopsied didn't show cancer?! They wouldn't be doing a lumpectomy, and the second area could be cancerous!!
My job is pretty physical, especially upper body. My breast cancer dr told me to take at least a week off, but based on my job duties that I might be better to take 2 weeks off. I have 2 1/2 weeks of leave left. I know that I will need to take time off to have radiation. Problem is, my boss refuses to let me make up my hours on another day.
I asked my GP to refer me for a second opinion, and he said that the dr I am going to is the best is the area, unless I am willing to go to Seattle, which would be very difficult for me to do.
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just fyi, children have a 50/50 chance of inheriting BRCA from a parent who carries the gene. Even if your sister tested negative & her bc is unrelated to a genetic mutation, you might still be positive for BRCA.
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Sorry that your boss won't work with your schedule, I think it's mean to not try to give someone with cancer a little lee way. Do you qualify for FMLA?
By the way, I am one year out from radiation and my radiated breast is larger than the other one. Not enough that you would notice with clothing in. It definitely did not shrink....
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Mrsmcg, the Oncotype Score is determined by your tumor. After your doctor removes your cancerous tissue it is not only sent to the pathologist to determine if your margins are clear but it can be sent to Genome Health, I believe that’s the lab that looks at 21 genes that make up your cancer. They issue a score on a scale of 0-100. The lower the score the lower the risk of recurrence. It is an exceptional tool to have to map out your treatment. My Oncotype Score is 14. I have a 14% chance of recurrence. If I go on hormone treatment it lowers my risk to 9%. Knowledge is power! I would insist on the Oncotype DX. Most insurances cover it. Genome Health states they have a payment plan if your insurance does not cover it.
Praying for miraculous results for you
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In the large majority of cases, when the OncotypeDX test for invasive disease is recommended, the test is performed on sample(s) of tumor tissue obtained from surgical treatment. This is because the results from surgical pathology may affect eligibility for the test.
I agree that the original poster ("OP") (who has not yet had surgery) does not need an OncotypeDX ("21-gene") test at this time.
However, she should take up the question of an Oncotype test (or suitable prognostic test) with her Medical Oncologist after her surgical pathology results are available. This will include consideration of:
(1) the formal eligibility requirements of the commercial test provider (Genomic Health); and
(2) the more stringent recommendations regarding the test under applicable clinical consensus guidelines from NCCN and ASCO.
Under clinical consensus guidelines for breast cancer from NCCN (Version 3.2017), in addition to hormone receptor status, HER2 status, and lymph node status, the size of the tumor can be a consideration. For example, for a person whose final surgical pathology is IDC, node-negative (pN0), hormone receptor-positive (ER+ and/or PR+), HER2-negative, the Oncotype test is NOT included in NCCN guidelines IF the Tumor ≤ 0.5 cm (less than or equal to 5 mm) in largest dimension.
Note that the OP's current estimated (pre-surgery) tumor sizes (4mm and 3 mm) are each technically below this size threshold.
As guidelines address the typical case and there may be appropriate exceptions, patients should not hesitate to seek case-specific expert advice from their Medical Oncologist. That said, most of those with very small (i.e., Tumor ≤0.5 cm), node-negative, hormone receptor-positive, HER2-negative invasive disease do not receive the Oncotype test, because they ordinarily have a relatively low risk of distant recurrence. Given that the potential benefit of chemotherapy is proportional to risk (smaller benefit with lower risk), the estimated chemotherapy benefit may not be seen to sufficiently outweigh the risks of chemotherapy in such case. Endocrine therapy alone (if recommended) would ordinarily be sufficient.
BarredOwl
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Hi Mrsmcg:
If at all feasible, I note that seeking a second opinion does NOT does not mean you would have to be treated at the second opinion institution. For example, after the second opinion, you may still choose to seek all treatments locally, or perhaps you would seek surgical treatment in Seattle (e.g., lumpectomy), but would have radiation locally.
It sounds like you have some questions about your diagnostic work-up that have not been answered to your satisfaction. A second opinion at an independent institution is a very good way to probe the sufficiency and quality of the work-up and of the recommendations received to date, as well as to further explore any questions or concerns you may have.
A second opinion review can include one or more of: a review of all imaging by a Radiologist; review of pathology slides by Pathologist; consultations with a breast surgeon, Radiation Oncologist, and/or Plastic Surgeon (if reconstruction or oncoplasty is of interest to you) or other specialist.
Sometimes, additional diagnostic work-up, such as further imaging and/or biopsy may be recommended, or perhaps referral to a Genetic Counselor or other medical genetics professional for a more thorough genetic/familial risk assessment (in light of your personal medical history and a more complete family history (including breast and other types of cancers, ages at onset, multiple primaries, ethnicity, etc.).
If the second opinion differs in a material way from current advice, and you wish to be treated locally, the results can be shared with your current team.
In my case, I was initially diagnosed with unilateral breast cancer. I sought a second opinion. As part of that, a Radiologist reviewed all mammography and MRI results from the first institution, and she felt that some microcalcifications in the mammograms on the "good" side warranted a closer look by diagnostic mammogram. This led to another biopsy and new diagnosis of bilateral disease, substantially altering my treatment plan from unilateral to bilateral mastectomy. (I sought treatment and follow-up at the second opinion place.)
Best,
BarredOwl
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My dr doesn't think I need to have the BRAC test. She states: BRIP1, was not associated with an increased risk of breast cancer This is the only line in the whole breast and ovarian cancer risk Article! There is no association of breast cancer. She finally told me today that I could come in this week and get the blood work done. I have requested a second opinion, but do not have an appointment scheduled yet. I will be seeing a plastic surgeon on Thursday.
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Mrsmcg- the genetic testing world is an interesting place. I also have BRIP1 and was informed at my counseling session that the testing companies categorize the mutations by what people are diagnosed with within that company’s test group. So basically if you have a lot of people that have BRCA they will show high rates of breast and ovarian cancer. BRIP1 has higher than average rates of ovarian cancer almost all companies agree but the breast cancer side is where some disagree. Some show higher rates (but not as high as BRCA) and others do not. It all comes down to how many patients that company has tested, how many have the mutation and how many from that mutation+ group tested by that 1 company were diagnosed with a particular condition.
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Is there a link to good questions to ask at a second opinion? Tomorrow I have an appointment with a plastic surgeon, aa appointment for a second opinion and an appointment for blood work.
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If I understood the plastic surgeon correctly, he said that if I just have the lumpectomy and no Oncoplasty that more Seromas would be likely, and when there are Sermonas in the breast and a person has radiation, that a breast can become disfigured. This is something that I what to find out more about from the second opinion dr that I see later today.
I am very reluctant to have the oncoplasty done on the right side at the same time as the lumpectomy is done on the left breast. I may be happy enough with how things look on the left side after radiation. The dr. said that I could wait to determine if I want to do something to the right breast, until I found out how I want to proceed with the left breast.
Does anyone here have further information about sermonas and how they were affected by radiation? I can't seem to find much information on this topic.
Thanks!
Colleen
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I saw the plastic surgeon yesterday. He took time to answer all my questions, and loved that I brought a printed list with me.
He explained why I would benefit from oncoplasty, and what the drawbacks were from not having the surgery. He agreed that waiting to do the right side was the best option. I also had my second opinion yesterday. The cancer surgeon was a way better communicator than my current doctor. He seemed very compassionate an caring. I left his office feeling much better informed. He said on numerous occasions that I had a great team, and that the PS was the best in the area. The problem is, that the one dr. works for Multicare, and the other dr works for Franciscan. The second opinion dr explained that Multicare did not have a surgeon of the PS caliber, and none that could perform oncoplasty.
I am very disappointed, as I would love to have this cancer dr as my surgeon. The first dr is a great surgeon. She performed my first lumpectomy. She is just a horrible communicator. For example, when she mentioned about doing oncoplasty she just talked to about it being a benefit to having cancer - your can get a boob job!! I said I didn't want to do that, just stick with the lumpectomy, and she said okay. That's it. She did say that I could go home and look in the mirror that night and let her know if I changed my mind. What if I wouldn't have changed my mind?! I wouldn't have known that it beneficial to my care to have the procedure done, due to the fact that the cancer is very close to the skin, and the chance of having seromas. I was informed that without the oncoplasty that my breast could end up deformed. The second opinion dr agreed that the oncoplasty was a good decision. My regular dr told me none of this. She made it out like it was surgery for cosmetic purposes.Another example of the first dr's poor communication is when she talked to me about radiation. She simply said that there was whole breast radiation that would be 5 days a week, for 6-7 weeks. She said that my area was small, so I might be able to get by with 4 to 5 weeks. She also said that there was PBI - 2 times a day for 5 days. I said I would be interested in PBI due to not having a lot sick leave. She said okay, if we get clear margins PBI would be possible. When I mentioned PBI to the 2nd opinion dr. he said that he hasn't had anyone do that in a year. He explained the side effects, because of the port that is inserted to administer the radiation it has caused patients to have chronic pain years later, and it can cause hard tissue that makes it difficult to do self exams. Wow! The first dr. didn't tell me about this!! This gave me a lot more to think about before making a final decision.
I don't know what drs normally suggest, but I was told to get a sports bra with a zipper to wear post surgery and that I would have to wear it for 3-7 days. I have been having a lot of difficulty finding one that fits and doesn't cause irritation (sensitive skin). I went to at least six store, and even bought 2 on-line. I asked my first dr for a prescription to go to a place that sells specialty bras. She didn't want to write the prescription because she said that it would be hard to fit a bra until after my surgery. Wouldn't it be a bit late to get one then? My breast would be swollen, and sore, and I wouldn't be able to drive to the store for a fitting.
I did do the blood work for the genetic testing. I asked the nurse at the 1st dr office if it would be best for me to wait until I got the results back before scheduling the surgery. She said that I could get on the surgery schedule for a time after the testing comes back. I asked if I should wait until the results came back to have surgery, and she said that it didn't matter... but if the genetic testing came back and showed the Brip gene that the surgery could be a mastectomy!! How could she tell me that waiting for the genetic testing results to come back in didn't matter?! The dr said that the testing is more for ovarian cancer.
Really wishing that I could go to the second opinion dr or that there was a way to make the 1st dr better at communicating!!
Sorry for the long rambling post.
Mrsmcg
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A suggestion on the bra factor: check out the bras at anaono. They are designed for those of us having/have had breast surgery and they are super soft. I highly recommend the full coverage pocketed bra in the make merry collection. If you call them they will help you with sizing (it's different than traditional bras).I also have super sensitive skin and this was a bra I could wear quite comfortably.
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I wanted to start this as a new thread, but I couldn't figure out how.
I am having oncoplastic (oncoplasty) on the left breast that was diagnosed with IDC. I have the option to have the same procedure done to the right side. I am having a very difficult time making a decision in this regard. This has been causing me a lot of stress. I want to make this decision and feel at peace with it. Can anyone tell me if there are cons to not having the unaffected side done? What are the pros, if any to not having it done?
My boobs are a size 38D. I have Ptosis (droopy) breasts. I know that this procedure would help with that, but I'm not huge on the cosmetic reasons for doing the procedure to the unaffected side. I can live without my boobs being completely equal. That said, my left breast is already smaller than the right side. I also had a lumpectomy last year.
Any feedback would be GREATLY appreciated. Trying to come to a decision is realy stressing me out!!
Mrsmcg
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Hi Mrsmcg:
You can start a new thread as follows:
(1) Copy the text of your post above;
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https://community.breastcancer.org/forum/44
(3) Click the pink "Start a new Topic" button.
(4) Enter a title for your post in the Subject field
(5) Paste the text of your message into the Body field.
(6) Click "Submit."
To keep track of it, you can add your new thread to your Favorites.
In your "Dashboard" where "Favorites" are listed, at right you can request email notification of each new reply.
BarredOwl
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I am in New York. Went to Stony Brook and others for 2nd opinion. I am Brip1 pos diag. 2/2019. Doctors are backing my decision for double masc. and ovarian/uterus removal this upcoming week. I am not going to take any chances. I want to be ahead of this. I am 50. 3 children. thin, healthy, no cancer history. I want to be around for my children. I am nervous about menopause as I am not symptomatic so going from 0-100.... Now investing hormonal and possible anti depressant therapy if I need. I'll wait and see. Best wishes to you!
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I am in New York. Went to Stony Brook and other doctors for 2nd opinion. I am Brip1 positive diag. 2/2019. Doctors are backing my decision for double masc. and ovarian/uterus removal this upcoming week. One surgery, one and done! I am not going to take any chances. I want to be ahead of this. I am 50. 3 children. thin, healthy, no cancer history. I want to be around for my children. I am nervous about menopause as I am not symptomatic so going from 0-100.... From my understanding this is a newly found gene so not enough data as of yet. All doctors that I met with, all patients had cancer, then did genetic testing. I am their first tested pos. with no cancer. Going prophylactic! Best wishes to you!
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dohalloran, Good luck to you. Take time to heal from the surgery and follow all the discharge orders. Don't worry about Menopause. Your GYN should be able to guide you through the symptoms you may have and suggestions on how to get through them.
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