Just diagnosed. Have several questions about the process, etc.

JillGalusha

Hello, I am a newbie and this is my first post. I am in the early stages of this entire process. I had my annual mammogram then an ultrasound then a needle core biopsy. I had 3 needle core biopsies a few years ago - two in right breast and one in left. Fortunately they all came back negative but I was scared to death. This time they found a spot in the right breast. The biopsy results were invasive ductal carcinoma. The size was extremely small at the time of the biopsy - 3mm by 4mm. The cancer grade is 2. I am ER+ PR+ and HER2 IHC negative HER2 ISH not amplified.

I have not met with the surgical oncologist yet. My appt is in a week or so, three weeks since diagnosis.

Question 1. What do you think will happen on this first doctor visit? ********** I suspect she will recommend a lumpectomy and removal of some lymph nodes and do biopsies on both. Is this true?

Second, I am at a higher risk of breast cancer due to family history. My only sister was diagnosed at stage 3 34 years old and died two years later. My mothers sister also had breast cancer. However I am BRAC A AND B negative.

Third, I want a double mascetomy plus whatever chemo, radiation, and hormone therapy they recommend. I know you all think this is not a logical decision but I still have PTSD from my sisters entire experience. I begged her to have a double mascetomy right away but she chose lumpectomy but eventually had to have the mastectomy anyway.She died a horrible traumatic death at 36.

Question 2: Do you think the surgeon will approve my decision? I am firm in my decision.

Question 3. Do you think my insurance (very good) will cover this plus reconstruction if the surgeon recommends lumpectomy? I have several friends who had lumpectomies but the cancer came back. In one case, she had no cancer in her breasts but breast cancer was found on her head.

I don't want a lumpectomy. I want to reduce my risk of spreading or reoccurrence to zero. I want a double mascetomy.

I would appreciate anyones thoughts on this subject.

MTwoman

Jill,

First of all let me say I'm so sorry you've found yourself a member of our sisterhood and you'll find support here for WHATEVER decisions you make for yourself on your journey. It is completely understandable, after your sister's battle, that you want to do the absolute maximum you can right away. I would encourage you to find a team that is accepting of your decisions as you are a very important part of your treatment team and they provide you with expertise to help you make your decision (not make it for you). I don't believe that you will have difficulty finding a surgeon to perform BMX, given your history and strong desire. I also wanted to let you know that BRCA 1&2 are not the only genes that have been identified that raise your risk of bc. The genetic panels now have (someone will correct me if I'm wrong on this ) 26 different genes that they test. Anyway, if your previous testing was limited to BRCA gene mutations, it may be a good idea to get a newer more comprehensive test done.

currently, Insurance companies are required to cover reconstruction. unfortunately, there is no way of knowing what impact the current administration will have on insurance coverage starting in 2018.

At your first visit, your doctor will go over the specifics of your pathology report, perhaps give you an intial staging (based on current pathology and size of the lump) and the implications to treatment. For example, women that have over amplified expression of HER2 (which you do not) or women who are Triple Negative (again, you are not) are frequently given neo-adjuvant chemo to shrink their tumors before surgery. You will most likely have a team, MO (the one who's expertise is in chemo), RO (the one who's expertise is in rads) and the BS and/or PS (the ones who operate and reconstruct). I actually had an additional member on my team who was a Pathologist who was the expert in DCIS. (he actually recommended an mri before radiology which found additional areas of concern that also turned out to be DCIS, hence my initial lx, followed by mx). You may decide, at any point, that you want to get a second opinion if you are not feeling confident in what is being recommended or you don't feel like you are getting the care that you want. That is ok, many of us have done that. Sometimes you hear the same information, but sometimes not, providers have varied experiences/strengths/weaknesses and preferences of their own, there must be a good fit between you.

The other thought I had for you was, perhaps a therapist, support group or nurse navigator might help you, given that you still feel like you have PTSD from your sister's battle. Having someone who is supporting you on your journey, who can help you process whatever it is you are experiencing could be very helpful. Many of us here have used a therapist as part of our support system.

Sending you love, light and ((hugs)) Please let us know how else we can help and support you.

Falconer

Hi Jill, I too am sorry you must find yourself here. MT Woman has excellent advice to offer, particularly, if you aren't already seeing a therapist, to consider doing so now. The grief you must be reliving after the loss of your sister is a lot to carry alone, especially as you enter into this yourself. MTWoman covered so much, though I will add that I had an MRI of both breasts in addition to an US and mammo. Holding you in the light as you go through this difficult time.

ChiSandy

• Your breast surgeon will lay out your options, pros & cons—and a competent and caring surgeon will respect your surgical decision. Know, however, that whatever course of action you follow, you cannot reduce your chance of spread or recurrence to zero. Even bilateral (“double") mastectomy (aka BMX) is not a guarantee against recurrence. Yes, it does cut your chances in half—but with a tumor that small and with histopathology that favorable, your recurrence chance with lumpectomy + radiation is quite low. Not to frighten you, but there are women here who after BMX developed tumor cells in the chest wall or other remaining tissue. But if you feel your family history is too high a risk (85% of us here had NO family history), prophylactic mastectomy of the healthy breast is your prerogative.
• (I have no idea how to get rid of these stupid dots)

As for chemo, with that histopathology (hormone-positive, HER2-negative, moderately differentiated) and tiny tumor size, it is doubtful that an OncotypeDX test would even be ordered—it's for tumors in the “gray area" as to chemo vs. no chemo. You are definitely not in the gray area. Chemotherapy's benefit over anti-hormonals alone would be too small in your case to be worth the very real risks. Your tumor is composed primarily of slow-growing cells. Chemotherapy kills fast-growing cells, including healthy ones in your body such as those in hair follicles, epithelial tissue (oral and nasal mucosa, stomach lining, etc.), peripheral nerve endings and bone marrow (which among other functions produces the cells that strengthen your immune system). It cannot tell the difference between fast-dividing tumor and fast-dividing normal and vital cells. It should be saved for those cancers for which it is truly necessary. (First, do no harm).

With lumpectomy, you would need to follow up with radiation. Usually, that's unnecessary after mastectomy…but not always. By law, insurance must cover whatever surgery is necessary to achieve symmetry.

With your histopathology (especially positive hormone-receptor status), you would be recommended to have endocrine (anti-estrogen, somewhat confusingly referred to as “hormonal" therapy, which is not the same as being given hormones) therapy. The goal is to starve those estrogen-fueled tumor cells. Depending on your age, desire to bear children and menstrual status (pre-, peri-, or post-menopausal), you would be offered tamoxifen, tamoxifen plus ovarian suppression or removal followed by an aromatase inhibitor (AI), or an aromatase inhibitor alone. Tamoxifen blocks the tumor's estrogen receptors so they can't access the estrogen in your body, regardless of which organ makes it; AIs keep the liver hormone aromatase from converting androgens made by fat cells and adrenal glands into estrogens (our bodies make estrogen this way even without functioning ovaries).

If you are strongly concerned that despite BRCA-neg. status your sister's early death from breast cancer might be hereditary, I heartily second MTWoman's advice to get more genetic counseling followed by newer tests that look for other mutations such as PALB or Chek-2. Mutations might predispose you to other reproductive or digestive cancers as well.

But one step at a time. One foot in front of the other. See your surgeon first, and make an MO appointment as well as genetic counseling. And remember that (as with everything else in life), peace of mind is relative, not absolute.

Pessa

I had stage 1, grade 1 IDC. Mass was difficult to see or not seen on mammo, US, MRI. BRCA negative. I wanted aggressive treatment. I asked for and had bilat mastectomy, chemo (I was in the gray area on the Oncotype test (28) so the choice was mine) and anti-hormonal (anastrazole), still on it, year 7. Did not need radiation therapy. I met with no resistance on the part of the surgeon or the oncologist. Insurance paid for all (their part). I did not want reconstruction.

ChiSandy

I would also add that if your breasts are dense, future mammos might not reveal tumors and that therefore mastectomy might be a logical choice. Ask your MO point-blank about chemo. She might order an OncotypeDX test, but not very likely given your tumor’s characteristics. And she can refuse to give you chemo if she feels it’s not warranted. You have the right to a second opinion (though perhaps on your own dime), but it’s likely to be the same.

Too many of us want to do everything we can to fight our cancer, without realizing that is not the same thing as doing everything we should.

JillGalusha

Thank you all SO much for your thoughtful replies. I am being treated by Moffitt cancer center in Tampa, Fl - supposedly ranked 6th in the nation in cancer care. My nurse practitioner did tell me that since my initial BRAC testing several years ago, there are new tests available. She gave me the phone number. However, I am concerned that getting an appointment, submitting the blood work and getting the results back (last time it was more than a month) will delay my treatment. I am a nervous wreck as it is.

As for PTSD with my sister. It has actually gotten a lot better. I DID go to counseling then. She died about 11 years ago. I am in counseling now so I hope to be able to deal with it in therapy. I was just scared thinking about her traumatic death.

Moffitt has a team of doctors who review pathology reports and the entire case and history and collectively make recommendations. I guess I will find out what they recommend during my first visit on the 22nd. Although I am very educated and a researcher by nature, many of the terms in the pathology report were difficult to understand despite attempts to google them multiple times. I can't tell you which words specifically but you know how technical pathology reports can be. My nurse practitioner also told me that the pathology report I have on the biopsies are not the ONLY pathology reports I will get. This makes me wonder if there will be a surgical step after meeting with the surgical oncologist but before the mastectomy. What do you think? I am nervous about any delays as the cancer could spread to the lymph nodes if it hasn't already.

One of my reports, mammogram, ultrasound or pathology recommended a MRI. I am pretty set in my decision to have a double mastectomy so I wonder if they will bother with that test.

I don't know what a MO doctor is. Can someone explain?

I know the doctor will likely recommend Tamoxifen and other drugs due to the status of my receptors. Regardless of the mastectomy, I am certainly willing to do chemo(unlikely and dreaded), radiology, and anti hormone drugs.

I have one ovary but am post menopausal ( 56 years old). I know this will affect treatment decisions. I do wonder if they will remove my remaining ovary.

What is OncotypeDx? I reviewed every WORD of my pathology and other reports and don't remember seeing that word.

Tessa, your experience really relieved my mind. Thank you so much.

My breasts are VERY dense and I had silicone implants over the muscle. When I was in Baton Rouge my doctors often had me do mammogram, ultrasound AND MRI but since moving to Tampa, Moffitt hasn't ordered any. I hope this will help convince my doctor that my decision to have double mastectomy is warranted.

FYI. Just read on my pathology report that prognostic/predictive factors will be performed. Final results will be in a separate report. I texted my Nurse Practitioner and asked her if this has been done and if I can pick it up.

How did you guys get the solid line with your age, diagnosis, treatment and other factors at the bottom of your posting? I would like to put that on all of mine too.

All of you have been wonderful and have helped relieve my mind. My mind has always gone to the worst case scenario. Thank you all so much. I hope you can answer some of my questions/issues.

MTwoman

so glad that you have a therapist who already knows you and can support you, as well as a good treatment center. I can answer some of your questions, but will leave the rest for others who can better answer them.

An MO is a medical oncologist, whose specialty is medication interventions for cancer (chemo-therapy); as opposed to an RO (radiation oncologist), a BS (breast surgeon), or a PS (plastic surgeon). Your team at Moffitt will most likely also contain a Pathologist (or clinical pathologist). All of these different experts stay current on the latest research in their specific areas and the implications for treatment.

As for the info under the signature line, go to "my profile" at the top right hand corner, and go to my diagnosis and fill it in. You can also select your privacy settings to show or not show items.

In regards to pathology, your first pathology report comes from the biopsy. You will get an additional one any time there is a surgery. For example: I initially had liquid withdrawn from the palpable mass I presented with and cytology results which suggested cancer (cytology is from liquid, pathology is from tissue and is more precise. if someone has a needle biopsy, they'll get an initial pathology report), then I had a lx and SNB (sentinel node biopsy) and that pathology report set my diagnosis. After an mri found more DCIS in other areas of the breast (multi-focal), I had several ultra sound guided biopsies and got pathology reports from those which only slightly upgraded me from grade I-II to II with some areas of necrosis (so more aggressive, but only slightly); although my ER-/PR-/HER2- characteristics remained the same in those samples. If those samples had come back with microinvasions, I could have been upgraded further depending on their size and the micro-invasions themselves would have been tested for their characteristics (ER/PR/HER2). Finally, I had mx and ANOTHER (the final) pathology report was generated. So women may end up with more than one pathology report, as more than once tissue was submitted for pathology. It is important that the entirety of samples be considered as many bc is not homogeneous, and your treatment plan should take into account the most aggressive aspects for maximum control.

We are all "in your pocket" as you go through your planning. Please let us know how we can help ((hugs))

keepthefaith

Jill, sorry you are going through this. Keep in mind, that even if you have a MX, it is still possible to have a recurrence. It seems logical that it cannot happen, but unfortunately, it can. There are several things to consider and bottom line, you have to do what you think is best for you! MO Dr is a Medical Oncologist.... Cancer Dr. You will get another pathology report when you have surgery. Sometimes the biopsy report and surgical report differ. Usually not greatly. My Biopsy said Grade 3, my surgical Pathology Grade 2. They will use your surgical path to determine your Treatment plan. Best wishes moving forward!

JillGalusha

MTwoman, Thank you so much for the reply. I know I am in the earlier stages of post diagnosis and pre treatment. I don't have a number result (Alfred score fore ER +) and no number result for PR +. My pathology report does not list any genetic tests or genome assay and I don't know why. I have no idea if my cancer is slow growing or fast growing.

I know I have very dense breasts and am considered high risk.

My last issue is that I just remembered that when I had my hysterectomy in 2004 they left an ovary. I was 44 at that time. Now at age 56 I don't know if the remaining ovary is producing any estrogen/progesterone. I wonder if they will remove the remaining ovary.

I am anxiously waiting for my surgical oncologist on the 22. I was told we will be reviewing the pathology report and make recommendations and work with me to determine the best plan. I am set on having a double mastectomy because of my personal history/risk and family risk.

I updated my profile. Thank you so much for helping me do this.

CeliaC

JillGalusha - Re: the solid line with diagnoses, etc. is populated by going to My Profile and then click the My Diagnoses and My Treatments "tabs" and fill out what you wish. Hope this helps. Best wishes.

ChiSandy

I finished menopause at 55 and at 65 still have my entire reproductive system, ovaries included. Why do you assume that you will get Tamoxifen, even though you’re postmenopausal (which means that, even though you may still have an ovary, it’s for all intents & purposes “dead”)? Most women assume that, often mistakenly. I assumed that at first, too, because for years & years in lay-oriented medical articles we’d all read that “ER+ means taking tamoxifen.” I was panicking and warned my shrink he’d have to pull me off Wellbutrin because it’s contraindicated with Tamoxifen. Until I dug into the Susan Love Breast Book and met with my MO for the first time, I’d never heard of aromatase inhibitors (AIs). When she explained that I would be getting an AI instead of Tamoxifen I breathed a sigh of relief. I could keep taking my Wellbutrin, and though AIs have side effects that mimic and accelerate those of aging, they don’t increase the chances of blood clots, uterine or retroperitoneal cancer the way Tamoxifen does, nor are they contraindicated with as many other meds. (Tamoxifen can also cause cataracts, but mine were already ripe so I had cataract surgery).

The reason postmenopausal women (and male bc patients) get AI rather than Tamoxifen therapy is that AIs provide superior protection against metastases in ER+ bc. Even though we no longer have functioning (nor in some cases, any) ovaries, our bodies still produce estrogen through a complex process. Fat cells (not the fat inside them) and adrenal glands make an “androgen” called androstenedione. Our livers make an enzyme called aromatase, which converts that androgen into a type of estrogen. AIs interfere with the aromatase-caused conversion process, therefore reducing the remaining estrogen still circulating in our bodies. AIs are so much more effective in starving ER+ tumor cells of estrogen (Tamoxifen blocks the receptors, but does not reduce the amount of estrogen we make, wherever we make it) that many pre-menopausal bc patients on Tamoxifen start taking ovarian suppression drugs to shut down the ovaries, or even have them removed, in order to be able to switch to AIs. (You can’t take AIs with fully-functioning ovaries, but I am not sure why…the scientists & lay science enthusiasts—paging BarredOwl--here can explain it better).

Spookiesmom

Moffitt is excellent. My bs is an adjunct prof there and he was excellent too. I'm in Pinellas, pm me if you'd like to talk.

BringOn2017

Hi I share your pain. My mum died at 48, and her sister was diagnosed at 39. So I opted for bilateral.mastectomies when I was diagnosed with dcis (low grade). I had a biopsy done after a mammogram showed microcalcification on the right breast. I am also doing reconstruction and have expanders in. My genetic tests are still pending, and I've also done a gene panel as mentioned by others un the forum. Do keep in mind that genetic tests are helpful mainly when positive, as tests can only be done and analysed for known mutations, and there's lots of things that we don't know. Also be aware that after bilateral mastectomies , it is known that you still have around 5 per cent of breast tissue left, and that although the recurrence rate is reduced it can never be completely eliminated. Your BS will likely warn you of this, or at least mine did. Having said all that, 3 weeks after having opted for bilateral mastectomies, I am still convinced that this is the best decision I could have taken. My BS and radiologists fully supported my decision particularly as the mammos showed bilateral dense tissue and MRI showed bilateral background parenchymal enhancement making future radiology follow up very difficult.

Good luck 😊 The worst is the waiting time. Will be thinking of you.