new to forum, diagnostic mammo and ultrasound found large lumps

Hi, this is all new to me. i am 56 and have always been in great health. And although i am well-educated, i am embarrassed to say i took a "keep my head buried in the sand" approach to screenings. The last time i saw my OBGYN was when i gave birth to my last child 21 years ago. Three or four months ago i noticed a lump in my left breast seemed to be growing daily (I've always had large, lumpy breasts). The growing lump was accompanied by extreme pain, sometimes lasting 24 hours a day, other days, just a few stabs of pain off and on.
I finally went to my OBGYN for pap smear and breast exam. She felt lumps in both my breasts and sent me for a diagnostic mammo and ultrasound. When she called with the results a few days later, her voice gave away great concern... she sounded like SHE was in tears to have to tell me. She said I had bilateral malignant tumors in both breasts... a 2.5 cm lump in the right breast, and a 3.6 cm mass (plus other masses) in the left breast (the painful one).
I am scheduled for a biopsy and MRI in a few days. I've never known anyone who's had breast cancer before, so I have no idea how alarmed I should be (other than the morbid tone in her voice when she told me the news).

well it seems like learn a little and wait a lot... my radiology oncologist called with the preliminary results of the biopsies, and the results were a LITTLE better than anticipated. Malignant masses were only found in the left breast, the right breast masses were benign. so.... now i have an MRI scheduled for next week, and then with a surgeon a week after that. so i feel my wheels are spinning... I've been told now for weeks that i have malignant cancer, but we're just not down to the nitty-gritty yet... knowing about the hormone receptors positive/negative and the stage, and if i'll have chemo/surgery/chemo/radiation, or surgery/chemo/radiation, or surgery/radiation, or blah blah blah... i need a plan. this interval time of knowing i have it, but not knowing what is going to be done about seems interminable.

today i have an MRI. I'm really not sure what the MRI is for, since I've now had 2 ultrasounds, 2 mammograms, and the biopsies, but I'm sure they know what they're doing. I got the first appointment with my surgeon set for 9/1. I'm told he is excellent, although with a brusque bedside manner and a bit "crusty". I guess I can handle a less than stellar personality knowing that he is considered the best in his field in our area. Right? lol, trying to convince myself it's okay not to feel warm and comfy with my doctor.

here's my update: surgery date 9/28. i am ER+ and PR+, and the initial pathology report for HER2 is 1+, so we are waiting on the FISH test to make sure it is negative. i know nothing about what regimen of chemo/radiation/drugs that i'll be on yet. i'll be meeting with an oncologist and a plastic surgeon a week or so before my surgery. i don't know my stage yet, but the path report said Grade 2. i also saw in the path report "ki-67: 48%", whatever that means! There are so many unknowns still, but it feels good (today) to have a surgery date. Yesterday it did NOT feel so good. i was a mess after the appointment, but i felt very confident with my surgeon. i am slowly telling girlfriends, and a few friends at work.

i hate that every conversation is about cancer now, which is why i like just saying it all here! if i get all the facts/worries/self-doubts/loss of confidence out through writing in this forum, i can hopefully keep it from being the ONLY TOPIC with all my friends.

i forgot to say the MRI located a third lump in the left breast. There are 2 large lumps (approx 3.5 cm and 2.5 cm) that "kiss" each other, as the doctor put it, and in the MRI, it revealed a much smaller one underneath those 2 that was not visible in the mammograms or in the ultrasounds. Also, the MRI "lit up" 2 other small spots an inch or so below the left breast... not under the breast like the hidden lump, but lower on the body, like an inch under the bra line.

i know other folks read these posts, and i am just wondering if anyone reading this has had the same diagnosis as myself (that i know of so far)....ER+, PR+, HER2-, grade 2, stage unknown at this point, and if so, what did your treatment entail?

I am so very thankful for a place to chronicle this new and scary experience, and i'd be ever so grateful if anyone would share their own stories with me.

Post Edited (exqualls) : 9/3/2016 8:14:13 AM (GMT-6)

Had a my mammogram about ten days ago and got the letter saying they needed more imaging done due to nodule densities (2). Since that letter I have been feeling pain in my left breast. Actually have felt pain there before but am now paying attention to it. Am scheduled for a spot compression mammogram on Wednesday. Have not slept a full night since I got my letter, even if I take my ambien. Any suggestions? Nervous person here waiting to hear from someone. Forgot to add I am 65 so I can rule out period pain in my breast. Just really worried and it seems to take forever to find out anything. I am a worrier by nature so this has really set me off.

Post Edited (nana28) : 9/6/2016 11:21:05 AM (GMT-6)

nana28--
i understand completely. i am NOT a worrier by nature, but a lump or pain in the breast makes worriers out of all of us. we just have to take one step at a time, which means one test at a time. it seems like every time you take a test, the results might show they need to follow-up with a different kind of test. so the anxiety drags on. best of luck to you, and please keep us updated with your resultsl

Exqualls. So sorry you are having to go through all of this uncertainty. I know it can be excruciating having test after test and not knowing what's going to happen next.

Even though it can be helpful to speak with other people who have been through breast cancer, sometimes the horror stories can only increase the anxiety.

I hope you will keep in mind that for every bad outcome, there is probably another woman who had a good outcome. And as I shared my story above, I am one of those who had an OK outcome. Having breast cancer is a horrible thing and I will live with the scars and the knowledge that I could have a recurrence. But there is hope for a good outcome. I hope you will hold onto that possibility.

Post Edited (HealingThoughts) : 9/11/2016 10:46:40 PM (GMT-6)

My oncologist was an impressive person, and i felt quite confident and comfortable with her. There was just this one thing that gave me pause. She said they had a meeting of the "tumor board" (my surgeon had told me that he and a group of other specialists gather all information on a patient and discuss it thoroughly to debate and come to an agreement on treatment). She said that they had agreed that I would need chemotherapy, which didn't surprise me. But when i asked about the results of the oncotype test she said they had not felt that test was needed, that it is a test ordered when results are borderline, when they're not positive already that chemo is needed. I was not borderline because of the size of the lumps and the high ki-67 result-- 48%. Through all of my internet research, I have gotten it into my head that an oncotype test was imperative, so the fact the doctors did not feel it was needed in my case makes me feel like we're not going to have all possible information before going forward with chemo and (maybe) radiation. She said i could request that my surgeon order the oncotype test at the time of surgery, and the results would be in before I would be starting chemo, and IF the results made the need for chemotherapy doubtful, then the plan could be reconsidered (although I will be getting a port put during the surgery, in anticipation for the need of chemotherapy).

My third ultrasound went well enough-- they were looking now in a deeper area that had been spotlighted by the MRI. However the doctor did not think it was anything of concern.

Bills keep pouring in every day. A few hundred here, a couple thousand there---amounts they say insurance doesn't cover or that are under appeal. Usually I am obsessive with bills, paying them in full immediately, although there have never been so many or in such high amounts before. And what a relief it is that I actually do not care about the bills! I find i just set them aside, knowing I'll pay what I can when I can, without anxiety. The perspective that having cancer has given me makes me not sweat the "small stuff", like a bill being paid in installments and not in full.

Best of health and positive thoughts to all who are reading this, as I know that if you're reading, it's because you or a loved one are in a similar situation.

Post Edited (exqualls) : 11/3/2016 2:52:45 PM (GMT-6)

thanks, supafunk!

i am curious to know if anyone reading can share any information about the cold caps that are used during chemo to prevent or minimize hair loss? thanks in advance!

surgery was 2 days ago. i have almost no memories of the first or second day. the pain is pretty much tolerable. My husband and kids told me funny things i said during first 2 days!! i haven't been able to remember. i only remember that i heard my surgeon telling someone that all my axillary nodes on the left side had to be removed,

So glad you're healing well exqualls!!!

Still in the waiting game. I saw both my oncologist and my surgeon in the last couple of days, and both are presuming I will have chemo, as the mammaprint test isn't in yet, and may take a couple more weeks. My onc says I will have the ACT regimen, which I figured. Since I'm still healing from the double mastectomy I wouldn't start chemo until mid-November, and the mammaprint test should be in before then. So I will continue to keep all my fingers, toes, and eyes crossed that the results will negate the need for chemo



Best of health and positive thoughts to all who are reading this

I know I am using this forum as my own personal diary to chronicle my experiences with breast cancer, and thank God for it. I don't know what I'd do if I couldn't just let it all out here, in a way that I prefer not to burden friends and family with.... but believe me, I share plenty with them, I just want to cut them a break sometimes and not share every tidbit.

Yesterday was a very emotional day. A lot of stressful things unrelated to cancer were weighing on my mind, and so the appointment with the oncologist struck me particularly hard. This was the appointment they had labeled "educational". After I checked in, I waited for just a few minutes before a nurse I'd never seen before led me back through a maze of hallways that I didn't even know existed, until we went through a pair of doors that opened into a very large room filled with rows of chairs with patients hooked up to IVs. Everyone was in a different state of decay. People so sickly looking -- from nausea, or bone pain, or severe fatigue from the chemo--and either bald, or with an ugly wig, or worse yet, women my age (approximately) with a man's haircut. I never wanted to be one of those ladies who get to be 40 or so and then suddenly never do their hair again, they just get a man's cut- or close to it - and give up. I know I can wear a wig, but it devastates me to know I will be bald under that wig for 6 months, and then when it does start to grow, it takes 2-3 months to even have as much hair as a Marine fresh out of boot camp. I sound so vain, but it's only partly that. A woman having longish hair represents something--that she hasn't given up, that she's still active in life. And the reverse is true, at least in my eyes. To be my age with a man's cut (AFTER months of complete baldness), feels like anything fun in life is over.

I literally burst into tears when the nurse walked me through that room. I know I sound horrible, and I honestly and sincerely apologize to all women who choose to wear their hair short, and I truly DO know that it's only a hair choice and doesn't really reflect they've given up on life. Something about how I was brought up must have planted that notion in my brain when I was young and I've never gotten over it. I'm sure the majority of women with short hair find that there's more time to enjoy life since they aren't wasting so much time on styling and managing their hair. Obviously I have hair "issues", and for me personally, having long hair represents something to ME.... and entering that room and seeing my future that is now very close (I start chemo in just a couple weeks), just pushed me over the edge. Like I said, my day had been extremely stressful from non-cancer related issues, and so my reaction was exaggerated.

Yikes, I am really going on and on about this. The truth is, out of all the things in my life right now, cancer is the LEAST of my problems! There are heartbreaking issues going on with my husband, one of my children, and also severe money problems, as well as other, lesser problems. So I entered that room with all of the other issues having been at a boiling point that day, and well, I just fell apart.

However I am glad to have a date when chemo will start. Having information and moving forward is a comfort. If I could afford a psychiatrist I know I need therapy to deal with my negative reaction to short hair.

Again, I truly apologize to anyone with short hair, or who is bald, that I have offended. The negative feelings I have are all MY problem and based on God-only-knows some traumatic childhood experience or whatever. At least the fact that I will BE bald, and I will HAVE that short, man-ish hair for a very long time, as my hair grows EXTREMELY slowly, and I will have to deal with it, and the experience will surely change my outlook.

I have to add something about my "hair outburst". The same day I posted here how emotional I felt about the inevitability of baldness followed by short hair for a long time--I also shared those same emotions with one of my sons who's away at college. He was quite sweet and said he understood how emotional it will be to lose my long hair that I've always been proud of, but he disagreed about how I relate the look of extremely short hair on women as a symbol of them "giving up". He said I should see it as the opposite, because when I go bald, and then eventually go through months of having extremely short hair, it will be because I specifically have chosen NOT to give up. I am choosing life by going through chemo, and the hair loss is like a badge of courage confirming this. I am paraphrasing him, but his words were just what I needed to hear.

Post Edited (exqualls) : 11/3/2016 9:07:13 AM (GMT-6)