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Topic: New "primary" cancer; other breast--ewwww, ugh, yuck, boo

Forum: Just Diagnosed With a Recurrence or Metastasis —

Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.

Posted on: Feb 8, 2020 11:53PM - edited Feb 9, 2020 12:25AM by JLBinPDX

JLBinPDX wrote:

In 2017, I had triple negative stage 1ish, 2ish. Treatment was tough through chemo which reduced the tumor by at least 3/4 and had a lumpectomy. That was followed with four or so weeks of radiation. I moved through it, lived my life, and visited my treasured oncologist every three months, and grew back hair. Well just three weeks ago (after 2 1/2 years), he felt a small cyst. That cyst was nothing but the mammogram, ultra sound, then biopsy found a new tumor--in the other breast, not triple negative and only .8 cm. I'm dealing with all of it surprisingly well as I've done this before, no chemo this time, lots more support, family mess that occured at the same time as chemo are resolved, and I have great insurance and paid leave. I have a lumpectomy in 1 1/2 weeks with reduction and lift on the original cancer side since I'll be even more lopsided than I am now. I can handle all of this; everything about it is better than triple negative cancer.

But the more difficult part for me is . . . why did my body generate a new (supposedly) cancer? And why does my body choose to create cancer cells? These are question no ones seems to have any idea how to even begin to answer. I guess it's so rare that no one knows quite what to even say about it. This, apparently, is a new "primary" cancer from what I read online. After I get through this treatment, do I then just live with the "maybe there'll be a next time"? Or are there studies or what? What next? Do I press on my oncologist, surgeon, or radiologist to try to come up with some version of why and what now? Still a little new at the recurrence thing. Seems like there should be a little more info than "we just don't know." Any thoughts, ideas, similar situations, anything . . . looking for anything here.

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Feb 9, 2020 03:09AM AliceBastable wrote:

Some people are just crap magnets. I've had endometrial/uterine cancer, breast cancer, and kidney cancer, plus several non-threatening but sometimes nasty-looking basal cell skin cancers. Although I've had close relatives with each of those, the genetic test showed no connections. And except for the central/bilateral aspect of the endometrial cancer, everything has been on my left side - plus a largish neck lipoma and a hip replacement. I have like nine surgical scars from five surgeries on that side. I hope whatever hits next is on the right, otherwise the scars will start to overlap!

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Feb 9, 2020 06:13AM Ingerp wrote:

First of all, your body is not generating cancer cells; it’s just not fighting them 100% of the time. As my RO said, but for our immune systems, we’d all be riddled with cancer throughout our bodies. As to why—there isn’t always a definitive answer. There could be a genetic mutation that just hasn’t been discovered yet (I was tested for over 40 different mutations last year but that number is always increasing). Could it be environment? Maybe. Could it be a combination of diet and exercise? Maybe. Could it be, as Alice said, just bad luck? Maybe. I know you’d like to have an answer, because then you might have something you could change going forward.

The only thing most of us can do is try to minimize the risk of recurrence going forward. Things that have been shown to have an effect: not smoking, maintaining a reasonable weight, drinking only in moderation, and exercising. We all live with that fear but if something comes back, I feel pretty good that I’m doing what I can to improve my odds.

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/17/2018 Taxol (paclitaxel) Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Feb 9, 2020 10:47AM MinusTwo wrote:

I'd like to share something posted on another thread. I had what ended up being called a "local recurrence" in a totally different area - my collar bone - with in TWO YEARS of my original diagnosis & BMX. I've saved and read this often. I didn't screw up. My docs didn't screw up. Sorry you have another ride on this darn carousel. Good luck with treatment.

Here is an excerpt from the below:

"Like a lot of cancers, breast cancer grows by simple cell division. It begins as one malignant cell, which then divides and becomes two bad cells, which divide again and become four bad cells, and so on. Breast cancer has to divide 30 times before it can be felt. Up to the 28th cell division, neither you nor your doctor can detect it by hand."

"With most breast cancers, each division takes one to two months, so by the time you can feel a cancerous lump, the cancer has been in your body for two to five years. It can certainly seem like a lump appeared out of nowhere – especially if you or your doctor have recently examined your breasts and not felt anything suspicious – but in reality, the cancer has simply doubled that one last time necessary to be noticeable. By the time you can feel it, a breast tumor is usually a little more than one-half inch in size – about a third the size of a golf ball. It has also been in your body long enough to have had a chance to spread"

Here is a nice explanation of the above concepts from: https://oregon.providence.org/forms-and-information/a/ask-an-expert-breast-cancer-growth-rate/
2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 9, 2020 11:14AM FarAwayToo wrote:

First of all, I am sorry you have to go through this crap again.

Perhaps, I am going to sound harsh, but you asked for ideas... I would get a double mastectomy at this point. My situation wasn't quite the same, but here goes.

I was diagnosed with invasive cancer in the right breast (found the lump myself) and was about to start neoadjuvant chemo. I wasn't triple negative, bit wanted to be on the trial for neoadjuvant keytruda, and I qualified because my hormone positive cancer was determined to be high risk via mammmaprint test. My tumor was also larger than 2 cm.

As part of the trial they do serial MRIs. The very first MRI found two areas of DCIS in my other breast. That solidified my decision to get a mastectomy, and on both sides.

My treatment and trial was at a second opinion place (large teaching hospital and NCI designated comprehensive cancer center). I started my diagnostics for the lump I found at the local community hospital. Once they confirmed my lump was cancer, they wanted to do a "quick lumpectomy". Nobody offered MRI on the other breast, or even the cancer breast. Mammo saw nothing on the left. Had I stayed there, I would most likely get a lumpectomy, then chemo. I would continue getting mammograms on the other breast,.and they would likely show nothing until DCIS would become large enough or invasive.

Not saying this is your situation, but with two invasive cancers in two breasts within 3 years, I personally would choose to do BMX.

Yes, I know BMX doesn't eliminate the risk of local recurrence. Yes, there are studies saying that lumpectomy and radiation is as effective as mastectomy in local control. Until you dig a little deeper and see that for younger women (I was 40 at DX) there is, in fact, an overall better local control with mastectomy.

It's your decision in the end, and it opens a lot more questions (reconstruction or not, what type - nipple sparing or not) but I know for me in your situation the BMX would definitely be on the table.


Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Feb 9, 2020 12:41PM - edited Feb 9, 2020 12:46PM by JLBinPDX

Interesting comments, thank you. After the nasty 2017 triple negative stint, I chose to not worry and see the future as whatever I chose to make it. This came out of the blue--not even local recurrence, but something completely new (as far as all three docs can tell). I have to whine a bit to say that I've always done the good things and not done the bad, for the most part. Plus, no family history and no BRCA or other genes to tip us off. Irritated by the "Cancer fighting foods" and other similar products as that's how I've always eaten. Stupid cancer.

It was all I could do to get through my 2017 treatment as I was also dealing with an adult daughter in out-patient and her 6 and 7 yr old boys living with me in 560 sq ft condo (not even a balcony--ugh). Life was tough but we all do what we gotta do. I chose to put my faith in my oncologist. This time, same onc, same surgeon, same radiologist and I'm very happy with all of them. But I have more questions this time.

AliceBastable, Ingerp, and MinusTwo, all helpful thoughts. What's funny is that I'm in Oregon and Providence is my provider, MinusTwo. It was rather random that we found this early as it was the cyst that made me move to get a mamogram two months early. But isn't there more to be done to clue me in next time? Sorry, I'm uninformed about MRIs, PET scans, mamoprints . . . are these able to detect what's going on? I've asked my docs about these and still am not clear as to why to do them or why they may not serve me. And FarAwayToo, I appreciate your post. It seems a little extreme to straight out suggest to "get a double mastectomy" when you're not aware of the full scenario. I would never suggest a dianostic path for someone without having a full picture. Your help in offering what you've been through and what your path has been is what's valuable here; I'm just going to take that part in and try to ignore your medical advice and suggestion when you've never diagnosed me nor, likely, am a medical professional specializing in breast cancer. I do, however, appreciate knowing your own choices--I value that information.


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Feb 9, 2020 01:16PM FarAwayToo wrote:

I'm sorry if what I posted came through as medical advice - I never intended it as such. I just stated "what I would do".

Dx 8/31/2017, IDC, Right, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Dx 9/15/2017, DCIS, Left, 3cm, Stage 0, Grade 1, 0/3 nodes, ER+/PR+, HER2- Chemotherapy 9/29/2017 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Hormonal Therapy 2/23/2018 Zoladex (goserelin) Surgery 2/28/2018 Mastectomy: Left, Right Surgery 2/28/2018 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 4/5/2018 Femara (letrozole) Surgery 8/21/2018 Prophylactic ovary removal; Reconstruction (left): Saline implant; Reconstruction (right): Saline implant
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Feb 9, 2020 01:36PM Beesie wrote:

Ah, so sorry to see you back here.

You are unfortunately far from unique. One of the nasty little secrets about breast cancer is that once we've been diagnosed one time, we are at higher risk to be diagnosed again with a new primary. A breast cancer diagnosis brings along not just the risk of recurrence (the first cancer showing up again in the breast or as metastasis in the body) but also a higher future risk to develop breast cancer again. My MO told me that my risk to develop a new primary was about double that of the average woman my age. I'm a research junkie and I've read all sorts of studies and articles about this. It seems to be all over the map, in terms of what our risk really is, but my MO's "double the risk" is probably not far off. What's interesting, and concerning, is that the risk might be considerably higher for those diagnosed with particular sub-types, such as triple negative.

There is a discussion thread on this topic from years ago that has once again been active lately and which includes links to a number of recent research studies about second primaries. You might find it interesting:

.

Now that you've been diagnosed with two primary breast cancers, the question is, what is your risk to be diagnosed again? There unfortunately does not appear to be any answer to that question, making it much more difficult to know what to do from here, i.e. would a BMX be wise or is it unnecessary? Although the risk of a second primary is relatively well studied, and although our risk to be diagnosed a second time appears to be relatively high (as compared to the average woman who has never been diagnosed), the absolute number of women affected is quite small. Looking at this group (those who've had 2 primary breast cancer diagnoses) to determine the likelihood of a third diagnosis doesn't seem to have sparked any researcher's interest. At least I haven't been able to find anything. So the lack of information makes your decision on what to do more difficult.

What I can tell you is that screening is imperfect, particularly for those who have dense breasts - I don't know if you do. With luck, a good screening program including MRIs (which are most effective but often aren't always approved for screening purposes) will find a new cancer while it is small. But unfortunately there is no guarantee either that screening will find a cancer early or that a small early stage cancer might not nevertheless be extremely aggressive. My suggestion is that you ask your MO about your risk, and determine from your doctors how you will be screened going forward, should you choose the lumpectomy option.


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 9, 2020 02:04PM JLBinPDX wrote:

Thanks. My surgeon offered three options, of course--lumpectomy, mast, and double mast. Her statics were that survival is the same for all three. If I choose a lumpectomy (which I have as all three docs strongly suggest that's sufficient), chance of recurrence is 1%/year higher than the other two options. I can live with 1%. If that 1% would drive someone crazy, a mast or double mast may be a better option.

No one saw me as higher risk, really, as I had a great chemo reaction, totally healthy in every other way, good weight/little alcohol, no smoking/drugs, and all good markers for 2 1/2 years of quarterly visits after trip neg. I gotta get through this and then ask all of those screening questions for the future. Thanks for the link; I hadn't seen that.

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Feb 9, 2020 02:37PM Beesie wrote:

My only comment about the stats you received is that all of them are specific to the possible outcomes from this diagnosis of breast cancer. None of them consider your risk to develop yet another new primary, or what might happen if that were to occur.

While no one saw you as being higher risk after your first diagnosis, and it seems that no one told you were, the simple fact is that all of us are higher risk once we've been diagnosed previously. As I said in my earlier post, I don't know the risk for a 3rd new primary. However having been on this site for a while and having seen quite a few women return with a third new primary, my guess is that if someone has been diagnosed twice - showing that your breast tissue provides a friendly environment for cancer cells - odds of a 3rd diagnosis are probably higher than average. The unanswerable question is, "how high?".

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Feb 9, 2020 02:48PM - edited Feb 9, 2020 06:23PM by edj3

My first cancer dx was melanoma--breast cancer is my second primary cancer. Beesie is right, we're at higher risk with one cancer.

That's made me be an even stronger self-advocate when something weird pops up. Case in point, at a six month post-melanoma check, my derm noticed a lump on my arm that he was pretty sure was nothing serious. He offered to remove it, I said yes and it turned out to be a very rare kind of tumor that's associated with renal cancer. You better believe I followed up on that and it turns out I do have some small tumors on my right kidney. The radiologist is confident they're benign but they have to be monitored. So that monitoring goes on my watch list too.

(If I ever do develop a third primary cancer, I've decided I'm going to collect all those cancer ribbons and put them across the back of my car a la "collect all today!")

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 9, 2020 05:28PM AliceBastable wrote:

edj3

I'm thinking of a charm bracelet for mine and maybe banners for the front of the house - it would look like a tacky used car lot!

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/10/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/7/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Feb 9, 2020 06:23PM edj3 wrote:

LOL charm bracelet! That's brilliant!

Tried the tamoxifen, no thanks. Dx 4/9/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 9, 2020 10:54PM - edited Feb 9, 2020 11:02PM by JLBinPDX

Beesie, it isn't that I wasn't told that I was higher risk for recurrence, but that I had had such a good reaction to chemo, margins clear, no lymph nodes involved. And yes, I've always known that trip neg can come back, but no one saw a second, supposedly unrelated occurence coming on. I know that you say that once we're diagnosed with breast cancer, stats show we're higher risk for new, unrelated one. Either I didn't hear that, I know I didn't read that (nor still can find that), or just that I chose to live my life. Out of the blue is fine as I didn't worry much in those years in between.

My plan is set and if it all goes smoothly, I'll be done by the end of March. One of my concerns is meds. I take nothing now--and haven't since my first--since I was trip neg. I always thought that was one of the blessing that trip neg brought with it. Well now I get the other side--likely meds for long term. I've never been on meds so I'm not happy. At least my onc is progressive and listens to me; he knows I won't put up with anything that'll really impact my quality of life. Should I worry or are there enough options for ER+ PR+ HER2- that something will be decent to my body?

I know, a lot of questions. I went through the first with just trying to get through each day with all the shit going on in my life (and crappy AC/T chemo), but this time I'm more informed and in a place to learn more. I have such a great attitude, but a few things worry me--meds is one of them.

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Feb 9, 2020 11:01PM MinusTwo wrote:

No one saw my so called "recurrence" either. It was called a local recurrence because of where it was located. However it had totally morphed because now it was IDC instead of DCIS, and HER2+ so a totally different beast.

Yes, you have lots of options and the people on this site will always have your back.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Feb 10, 2020 05:19AM laolson18 wrote:

My mom was just diagnosed 8 years later with a new primary, now on her left breast. Originally diagnosed on right with triple positive. She had lumpectomy, chemo, radiation, and herceptin. This time around it was found incidentally on an ultrasound. The good news is that it is not Her-2 positive and very small, under 1cm. My Mom is 73 yrs old, and I am pretty sure the surgeon is going to pitch the conservative way to go, even though I would prefer her to get a bmx. It is not my body, so need to respect her wishes. I am also praying she doesn’t have to go through chemo again. Her Ki-67 is 10%. The nurse said this is slow growing, but does this value have a direct correlation to the grade of the cancer? It is IDC. She didn’t mention the grade and I am still waiting for the official results to hit her web portal

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Feb 10, 2020 11:22AM JLBinPDX wrote:

Hi laolson18. Sorry to hear about your mom. I kind of look at it that we all have struggles, just some of them have the word "cancer" attached.

I'm not familiar with "Ki-67." Can you explain. My under 1 cm (.8) tumor also is supposedly "new" and not HER-2 positive. Mine, too, is slow proliferation. All three of my docs thought the only real answer to be a lumpectomy. My surgeon emphasized that survival rate is the same with all three and that a lumpectomy carries only a 1% higher chance of recurrence than does a mastectomy.

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Feb 10, 2020 11:28AM laolson18 wrote:

Ki-67 is proliferation, so I am thinking it is one in the same when it comes to grading. I looked back on my mom’s path results from 8 years ago and the ki-67 was over 30% after her lumpectomy, which was considered high. The legend said anything over 20 was high. Anything under 10 was low. My Mom is at 10, so she is at the higher end of low, Sorry you are going thru this as well again. My Mom is handling it relatively well, and we are just hoping it was caught early and no chemo is needed. I am grateful she went 8 years without a recurrence, so hoping she gets another 8 before anything else goes on

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Feb 10, 2020 11:47AM - edited Feb 10, 2020 11:50AM by WC3

JLBinPDX:

You could have a gene variant not yet known to be associated with breast cancer, or that was not included in the genetic testing you had.

My grandmother got two different breast cancers in different breasts. I was diagnosed with it in one breast around the same age she was diagnosed with the first breast cancer and had a number of genes sequenced which were negative for cancer associated mutations. I chose to have a BMX. In my "good" breast, the path report came back as having a rare yet benign breast condition which has recently been found to have an increased prevalence in women with HER2 negative breast cancer.


Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 6/1/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/15/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Feb 10, 2020 12:01PM - edited Feb 11, 2020 11:19AM by JLBinPDX

Hi WC3. I don't have any history of cancer in my family except a maternal grandmother that maybe had cervical or ovarian cancer (no one knows). I know genetic testing isn't fully developed but we just relooked at 10 markers and all were negative so I don't really think it's that. I go over a lot of things in my head, but I'm not extreme or even really more than average on anything nor location or environmental stuff. We just don't know everything, that's part of it. As well as--we all know--detection is more advanced than ever. This second one was found at .8 cm and no one can feel it--only detected on an ultrasound.

This lumpectomy surgery this time seems a little more daunting as a plastic surgeon is reducing and lifting the other breast so they match--supposedly. I'm hesitant, but willing, but that means more invasive work, more surgery, more scars, and more recovery. Just slightly worried. I knew it was more than last time when they required that I stay the night. Then it's a waiting game to see the pathology. I'm anticipating that it'll all be as they're guessing--no lymph node involvement and clean margins. Then three weeks of radiation. I can handle that. Hoping.

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Feb 10, 2020 01:01PM Ingerp wrote:

Keep in mind any surgery beyond the lumpectomy is optional. I had a huge chunk taken out of the left side. My MO asked me if I was considering having something done to the other side to compensate. I asked her if people would be able to tell when I was dressed, she said no, I said then of course not. We all have uneven breasts to begin with, right?

Dx 3/11/2016, DCIS, Left, 6cm+, Stage 0, Grade 3, ER-/PR- Surgery 3/22/2016 Lumpectomy Surgery 4/19/2016 Lumpectomy: Left Radiation Therapy 5/17/2016 Whole-breast: Breast Dx 3/2/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 3/12/2018 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 5/17/2018 Taxol (paclitaxel) Targeted Therapy 5/17/2018 Herceptin (trastuzumab) Radiation Therapy 8/19/2018 Whole-breast: Breast
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Feb 11, 2020 07:36AM KBeee wrote:

I'm sorry you are dealing with this again.

Definitely get genetic testing. I'd write down pros and cons of all options to help you decide what's best.

I learned with my recurrence that unfortunately, all they can do is guess your risk because there are little to no studies on local recurrences and future risk.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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Feb 18, 2020 12:19AM JLBinPDX wrote:

Has anyone had a reduction on one side to match the other? I know it's optional, but the non-surgery side is already bigger and I'm opting for a reduction and lift to match better after the lumpectomy. I'm just wondering how the recovery is--and how the scarring is. The lumpectomy--with lymph nodes taken, too--was not too bad for my first triple negative breast cancer in 2017. I canceled my class the following day but probably could have actually taught. Will this be a lot worse with the small reduction/lift on the other side at the same time? All will be revealed on Thursday of this week--but wondering if I should go in for one last appt just to feel more assured.

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Apr 18, 2020 01:38PM Houston2016 wrote:

Hello Everyone,

I hope I’m in the right post about new primary. I had left breast cancer in 2015, went through neoadjuvant chemo,UMX,and radiation. Things were ok until about a little more than a week ago I felt right side breast sensation some fullness so it has discomfort. So I examined there is some fluffiness of area next to my armpit and looks like the breast is fuller and sag to the right. The breast feels soft but I can’t detect any significant lumps. I called the doctor to schedule an US but is this typical of a new cancer? One note is I just had 2D mammogram in 12/2019 and full breast US in 10/2019. I hope anyone has similar experience. Thanks

Dx 4/5/2016, IDC, Left, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 4/14/2016 AC + T (Taxol) Surgery 10/5/2016 Mastectomy: Left Radiation Therapy 12/13/2016 Whole-breast: Lymph nodes, Chest wall
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Apr 18, 2020 02:28PM - edited Apr 18, 2020 02:29PM by JLBinPDX

I'm sorry you're experiencing this, Houston2016. I'm not sure what a few things are in your post--US, UMX, and what a 2D mammogram is (perhaps US is ultrasound, but also not sure if a 2D mammogram is different than a typical mamogram?) Nevertheless, I'm guessing there is no "typical" about any of this. My experience has been completely different than your and yes, I had a second primary. I had triple negative in 2017 with awful chemo, a lumpectomy, and then radiation. I was humming along happy for no medication after such a difficult time. Two-and-a-half yeard later, up pops a new primary in the other breast, but at least not triple negative. A lumpectomy, a reduction and lift on the previous cancer/radiated side, and three weeks of radiation and I'm back to "normal." Nothing changed in my boobs for this cancer--you couldn't feel it, no shape change, no pain, no sensation, nothing. It was detected only because triple negative requires quarterly visits for five years and on one of those routine visits, the oncologist felt a cyst--tiny, but there. We decided on an early mamogram and it turned out there was a tumor that was completely separate from the cyst. Weird how things happen.

I wonder why you didn't get into your oncologist right away or maybe I missed that. I kind of sounds like you bypassed that and are going right to a US, an ultrasound? Being a little uneducated, why an ultrasound instead of a mamogram? It seems if you're concerned, which seems valid, you could get into your oncologist right away (maybe even in this covid time). Let's hope it's just some inflamation and not what you're worried about.

I will say, though, as much as women dread a recurrence or a new primary, my experience has been really manageable. I went through the tough one the first time and this one was really actually doable. The only negative is I escaped meds for the first bc but not this one. Not happy to be part of the Letrozole group, but oh well. Let us know. Hoping all good for you. Julie

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Apr 18, 2020 03:38PM Houston2016 wrote:

Hi Julie

I didn’t go to my OC because in my experience she’s not very quick or proactive in my concern. I talked to the nurse of my breast surgeon and he agreed for an ultrasound right away. I’m due for the six months follow up for the mammogram anyway. But since mammogram cannot really see my dense breast I want the US first. Sorry for the abbreviation, UMX is unilateral mastectomy. 2D mammogram is the traditional mammogram versus the newer 3D version which is clearer but has twice the radiation

Dx 4/5/2016, IDC, Left, Stage IIB, Grade 2, ER+/PR+, HER2- Chemotherapy 4/14/2016 AC + T (Taxol) Surgery 10/5/2016 Mastectomy: Left Radiation Therapy 12/13/2016 Whole-breast: Lymph nodes, Chest wall
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Apr 18, 2020 03:56PM JLBinPDX wrote:

I hope someone can reply if they've had similar experiences as to what you mention. Just my thoughts, take them as only that. I love my oncologist and have always felt really lucky to have found the right connection. I did, however, switch to a different surgeon so I do know that it's possible to jump on board with a different medical professional. If I didn't feel my oncologist was the first line of defense for an issue like you have, I would seek out another oncologist. My second thought is try not to focus on the negative as, perhaps, it could be lymphedema or ?? or ?? We tend to jump to the negative and that negative worry rarely serves us well. I know it's easier to say than do, but just a thought. Best. Feel free to post any time as we're here. My treatment just ended a week ago--I've been there, girl!


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