Been diagnosed

wmb62 · December 2015

Hi, I don't know if I'm writing in the right place?

I been just diagnosed Dec 21, Report from my biopsy confirmed cancer cells

I'm waiting for a call from a surgeon, I expect after the New Year.

After my shower I was putting some powder on, looking in the mirror, I lifted my breast up to put powder under, thats when i saw a dimple on my right breast so I examined it and felt a lump, I just had my physical exam in July all was good but was due for a mammogram. If I didn't lift up my breast and look in the mirror I would of missed it. It's not noticeable unless I lift my breast up. I was able to get an appointment with my doctor the next day, 2 weeks later I had a mammogram and ultrasound, the radiologist said I needed a biopsy. A week later I had a biopsy, the waiting was the hardest and longest. 10 days after I got the results, one day before my birthday, the lump was cancerous. I didn't want my family to talk about it because of Christmas. I'm afraid I would of had a meltdown.

Now the waiting begins again

Wen

LisaAlissa · December 2015

Wen, I'm so sorry that you need to be here, but glad you found us.

You're absolutely right that the waiting is really, really hard. But if you need to talk we're here...

LisaAlissa

annika12 · December 2015

Im so sorry !! You will find a lot of good information and support here. The beginning is oh do hard, it does get better !!! Hang in there and let your family and friends support and love you .

Annika

new2bc · December 2015

Wen,

I am sorry you had to join us. I too was diagnosed around the same time 3 years ago and know how hard it is to deal with this during the holidays. All the testings and appointments were delayed also because the offices were closed. I suggest you get a copy of your biopsy at the mean time and see what type of cancer it is. You can research here in breastcancer.org to get familiar with the terms before your appointment with the breast surgeon. This way, you will write your questions and understand when the doctor gives you more info. It is best to take someone else with you to the appointments so they can take notes. It will get better when you start having a treatment plan. I wish you the best of luck. Come back and keep us posted.

etnasgrl · December 2015

((((Hugs)))) So sorry that you have to join the club that no one wants to join.....but this is a GREAT place, full of amazing women. You'll find a lot of support, info, encouragement, and friendship here.

Right now, you're at the hardest part....waiting. I never would have imagined that there is SO much waiting when it comes to breast cancer, it's insane! Honestly, the waiting is the hardest part. Once you meet with your surgical oncologist and get a plan in place, you will feel MUCH better.

BethL · December 2015

wmb62- first off, let me say I am sorry you've been diagnosed. It stinks, always does. Seems unfair. However, it's good you found us. These survivors here have been an amazing support, hope I can do the same.

I'm always inspired when reading how some of us found our cancers. Ten years ago, age 38, I plopped on my bed on my back. Exhausted with 4 kids and trying to prepare my house for a showing that day. When I hit the bed, I had an awareness, hard to explain. I wasn't doing a breast exam, but for some reason my right hand went straight to my lump. I cried immediately, knowing it was cancer, then got up and went on with my day. Odd.

Then last August, I'm lying in the tub and go to flick something off my nipple (been mowing the grass and was filthy). When I did that, a drop of blood came out of my nipple. Scans after that said no cancer, even a ductogram said no malignancy. But I had to have the duct removed to stop the blood. And there it was 7mm idc and dcis. Miracle, really.

I think sometimes we get "help" in findng cancer, hopefully finding it early. If you hadn't lifted your breast that day, who knows when your cancer would have been found. We are fortunate to have had some of that help. Just what I believe.

I agree with the rest, waiting is soooo hard. I had to wait 3 months for surgery, for many reasons. Time plays with you. Anxiety is common. Rely on those close to you and come here often. You will be ok.

PMR53 · December 2015

I have post surgery camisoles as well as fancy out-on-the-town camisoles with pockets for drains and forms that I am wanting to give to someone in need. I also have a "chicken cutlet" that I used for symmetry. All are lightly used but clean. None of the charities around me will take them because they are used. Anyone need any of this or know what I can do with it? I posted this on the forum that deals with giving away this stuff and no one responded.

wmb62 · January 2016

Thank You everyone for your reply I appreciate it, knowing that I'm not alone helps me.

I still can't believe it, me I have BC? I don't know if I'm in denial or what!

Did everyone one else feel this way?

sandcastle63 · January 2016

I need help and advice! Initial dx was DCIS on right with ER and PR negative, HER2 positive. Left mammogram was "negative" Decided to get another opinion from the best in our area. Had the left mammogram redone and suspicious area noted. Had a right simple skin sparing mastectomy with left incisional biopsy due to the deepness of the "suspects". Lympho-vascular invasion evident but sentinel node negative on the right. Confirmed DCIS and IDC on the right and ER and PR positive. How does this change? Is this common? The left biopsy now shows LCIS and having a simple skin sparing mastectomy on the left in two weeks. My initial staging has increased from Stage IA to IIA. Now also have an oncology referral this week.Is this common to just keep getting bad news and bad news. When will this end? I'm my sole support financially. Concerned on many fronts here.

LisaAlissa · January 2016

Hi Wen!

Yes, many (most?) of us felt that way...we felt perfectly healthy and then they told us they weren't--it definitely didn't feel real. We didn't start to feel "ill" until we were being treated. And then it's the treatments (surgery, radiation, chemo, hormonals, etc.) that make us feel ill.

Just don't let what I call the "natural denial" keep you from showing up (for your treatments, appointments, etc.).

I know you got results, and have an appointment with a surgeon, but do you have your pathology report? Or do you get that when you meet with the surgeon? You're going to want to start a filing system to keep all of your papers. Procedure reports, pathology reports, blood tests, imaging reports (as well as copies of the imaging studies themselves), bills, explanations of benefits, requests for pre-approvals. There's tons of paper generated in connection with a BC diagnosis, and you'll want to try to get on top of it from the beginning. It can also be useful when you visit a new doc, to be able to hand over copies of the things they need (when the things that were supposed to be forwarded haven't gotten there ::roll eyes::).

Often, surgeons want to immediately schedule surgery. But remember that you do have time. You don't have to make a decision on the spot...and you may want a second opinion. Or want to meet with a medical oncologist (and possibly a radiation oncologist) before surgery. Depending on your specific diagnosis, medical oncologists are sometimes prescribing chemo before surgery to shrink the tumor to be excised.

It's very hard to hear someone discussing your cancer and be able to take it all in and remember it. Consider taking a "second set of ears" with you--someone who can take notes and help you make sure you get all the questions on your list addressed. It can also be good to ask if you can record the consultation. Re-listening to it later can be very helpful.

Please keep coming back--and hang in there!

LisaAlissa

ChiSandy · January 2016

Welcome to the sorority that nobody wants to rush (and for which the pledge period is long and arduous), but we're here for you. Everything happens for a reason--had you not decided to powder under your breast (or had done so without looking in the mirror), who knows how much longer it would have taken to discover your cancer and how much further it might have progressed. Had I not decided to check my calendar, things might have turned out worse for me too.

I was diagnosed after I reviewed my calendar and discovered, “oops, my last annual mammogram was 16 months ago." 12 hours after the mammo I got the report in my patient portal that my right breast had a “focal asymmetry not present on 2014 & 2013 mammograms." A week later I had the spot compression diagnostic mammo--the tech came in after and told me not to get dressed yet, that the radiologist wanted to do an ultrasound. While I was lying on the table, she directed my attention to the computer screen while she probed, and pointed out a little black jelly-bean shaped blob, which she guesstimated at 7mm. She demonstrated how it didn't compress when she pressed on it with the probe--so that's how I knew it wasn't a cyst. “Shit," I muttered. Ominously, she didn't disagree--and confirmed I needed to have it biopsied. I could have done so the next day, but I was scheduled to leave for New Orleans (a legal ed. conference and coffeehouse gig, followed by a senior center show in Scranton and folk festival in a Chicago suburb) the next day, and wouldn't be able to have the biopsy till two weeks later. The radiologist replied that I could wait that long, as it was probably growing for years before it was finally discoverable. (I never had any lumps, dimpling, or other breast changes I could see or feel). All during that trip, every moment of work and pleasure kept getting interrupted by the mantra “what if, what if, what if...."

I got the initial path report the evening of the day after the biopsy--IDC, grade 2, approx. 7mm. I was shocked, as I'd been expecting DCIS, or grade 1 IDC, at the worst. The morning after that came the better news: ER+, PR+. HER2-.I immediately made an appointment with the surgeon I wanted at the breast center where I'd been getting my annual mammograms, diagnostic imaging and biopsy. (When I found out I'd need a biopsy, I began checking out the various breast cancer specialists at that hospital system). I saw her five days later--but her first available surgery date was nearly a month out, which meant I wouldn't have finished my radiation treatments until mid-December. I told her my husband & I had booked a Mediterranean cruise for Dec. 12; she immediately made a call and traded a block of surgery time with her partner, and I had my surgery within the week. The fates cooperated: my lumpectomy had clear margins and SNLB was negative. The path report confirmed grade and hormone/HER2 status, and added that the mitotic score (how fast cells divide) was only 1, or slow-growing. But because the path report also said the tumor was 1.3cm, nearly twice what was originally estimated, my MO ordered an Oncotype DX; and because I'm Ashkenazi Jewish she also referred me for genetic counseling and BRCA, PALB and other mutation testing, despite my being diagnosed relatively late in life without a family history of breast or gyne cancer. (Had I tested positive, I'd have had bilateral mx without radiation, in order to be able to reconstruct right away; and I'd also have had my ovaries removed). She said she doubted I'd be positive for the mutations, nor that I'd need chemo. Nonetheless, because of my ethnicity and the tumor size, I was in that “gray area" where both tests were advisable.

I hear you about waiting: 10 days for Oncotype results, and another 2 weeks after that for genetic test results. Fortunately, the news was good on both fronts, my surgeon said my incisions were healing nicely (despite developing a humdinger of a seroma at the sentinel-node site) and I was able to get my remaining steri-strips removed and meet with the RO to plan radiation. Got even better news--instead of 6 weeks of whole-breast rads, I was a candidate for the partial-breast, high-dose three-week protocol. Then the next day my SNLB incision popped open and my seroma burst--I had to get it sutured and keep the stitches in for two weeks. It took more waiting before the RO was able to assure me that since that incision was outside the radiation field, I could proceed with radiation as planned. I finished the Monday before Thanksgiving, and we went on that cruise. Now comes more waiting: just started anti-hormone (AI) therapy, on which I'll be for 5-10 years; have to wait till Feb. for my followup MO appt. (and need to discuss how to keep my recently-diagnosed osteopenia from turning into osteoporosis--for which I will have to wait to see a bone specialist to be the final arbiter). I don't get my followup mammogram till August, which seems like an eternity.

The soundtrack to all of this has been Tom Petty's “The Waiting is the Hardest Part." So you're not alone!

BarredOwl · January 2016

Hi Sandcastle63:

Unfortunately, until all surgeries, related pathology and associated testing is complete, the diagnosis might change. But I hope they do not find anything else from the upcoming surgery on the left.

When you meet with the oncologist, be sure to remind them of the planned surgery on the left, as your treatment plan might be affected by findings from the left surgical pathology (although hopefully not). It may be worthwhile to meet now. You can get answers to your questions and ask if any further testing is needed for the right findings.

I am not clear on your initial or current diagnosis and various ER PR and HER2 statuses of DCIS and IDC from biopsy and surgery. I assume if you were initially staged as Stage IA, then both DCIS and IDC were present in the biopsy.

Be sure to obtain copies of the full pathology reports from biopsy and from all surgeries, and all supplements or addenda (with ER, PR, HER2 testing, etc.)

Compare the findings for the DCIS from the biopsy with those of the DCIS from the surgical pathology. If there is any difference in the findings relating to the DCIS, such as ER or PR status, point it out to the oncologist, request review and an explanation, and ask if further testing is recommended to resolve any differences.

Compare the biopsy findings for the IDC with those of the IDC from the surgical pathology. If there is any difference in the findings relating to the IDC, such as ER status, PR status, or HER2 status, point it out to the oncologist, request review and an explanation, and ask if further testing is recommended to resolve any differences. Is there an error, or is multifocal IDC present (multiple tumors with different properties)? In the latter case, what are the implications for treatment?

There is a very helpful pamphlet "Your Guide to the Breast Cancer Pathology Report" available in .pdf at the bottom of this page to download and print and annotate:

http://www.breastcancer.org/symptoms/diagnosis/get...

Also be sure to check the margin sizes for both the DCIS and IDC separately (distance from DCIS to edge of tissue, and distance from IDC to edge of tissue), and ask your breast surgeon to confirm that all margins are adequate.

To get more input from members here, you may also want to start your own topic with an informative title.

Directions to start a new topic: Log in to the Discussion Boards. Once you are logged in, you can start a new Topic. Navigate to a suitable Forum by selecting "All Topics" from menu at upper left. For example, the seventh one is the "Just Diagnosed" Forum. Once there, click the "Start a new Topic" button to begin writing. When you are ready to post your new Topic, click "Submit".

Hoping your surgery goes well.

BarredOwl

Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;

Bilateral mastectomy and SNB without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

sandcastle63 · January 2016

Thanks BarredOwl for your info and encouragement. I really needed your advise for when I see the oncologist Tuesday. I had not thought about those questions. I'm a RN but this is not my field of expertise. The differences are between the first path report from the biopsy and the path report post mastectomy on the right. I had no symptoms either. My yearly mammograms were "normal". Now I wonder.

Sandcastle63

BarredOwl · January 2016

Hi sandcastle63:

Do review the reports and figure out what each report said about each tumor, margins, etc. and follow-up with the oncologist as outlined above.

For example, if the biopsy showed the IDC was ER negative, PR negative, HER2-positive (ER- PR- HER2+), but the surgical pathology showed the IDC was ER+ PR+ HER2+, then you would wonder whether (a) you are understanding the reports correctly, or (b) if there is a pathology error somewhere (error in conducting the tests, error in interpretation of the tests, or error in reporting of the results for the biopsy or surgery), or (c) if there are actually two different types of IDC present with different features. This should be clarified, because there can be implications for treatment.

If there were two types of IDC present, I would also want to know what the sizes of the two tumors were, if known or knowable.

The ER PR status affects treatment under National Comprehensive Cancer Network (NCCN) guidelines for breast cancer (Version 1.2016). For example, the guidelines provide that for Node-negative (N0), Hormone receptor-positive, HER2-positive IDC, Tumor >1 cm:

Adjuvant endocrine therapy + adjuvant chemotherapy with trastuzumab (category 1)

But the following is generally provided for Node-negative (N0), Hormone receptor-negative, HER2-positive IDC, Tumor >1 cm:

Adjuvant chemotherapy (category 1) with trastuzumab (category 1)

If ER+PR+ IDC is indeed present, adjuvant endocrine therapy (e.g., tamoxifen or an aromatase inhibitor) would likely be recommended.

If you are not satisfied with the explanations you receive or just want confirmation, you can also seek a second opinion review of the pathology slides at an independent institution once the results from the left-side surgery are back.

I will be hoping for the best possible outcome for you.

BarredOwl

Been diagnosed

Comments

Categories