2 different types of cancer in seperate breasts-anyone else?

jworrell

Hello, I'm new to this and still learning all the abbreviations. In my left I had Stage 1, Grade 3, infiltrating ductal, ER/PR+ and HER 2 negative. In my right breast I had Stage 3, Grade 1, infiltrating lobular, ER/PR+, HER 2 negative. My mammoprint came back at high re-orrurance on the left and low re-occurance on the right. I've already had a mastectomy and I'm waiting on chemo/radiation. I go to my oncologist on May 2nd. Does anyone else have 2 different types of cancer in seperate breasts? I sort of feel like I'm alone since everything I've read focuses on just one or the other type. I really want to know what type of chemo works best in this situation. One doc said ACT treatment, other said CT treatment. ACT seems really scary, and I want to make sure I really need it vs. CT. Any advice?

coachvicky

I had DCIS invasive and non invasive and lobular carcinoma (4 cm). I am triple positive. After a bilateral mastectomy in July 2016, I started chemo 22 August 2016. I had 6 rounds of Taxotere, Carboplatin, and Herceptin. I am now finishing 12 rounds of Herceptin. I started the oral Rx Arimidex in April 2017.

I would take the most of everything you can get. I decided I want to live so bring on all the meds available.

My husband used the gel caps during my first six rounds on chemo. I lost maybe 40% of my hair and that was because we did not use dry ice on the gel caps during round 1. We thought freezing meant in the freezer, LOL.

Best wishes on your journey.

Coach Vick

Meow13

I had ilc and idc but in same breast. I only received one oncodx number, it was 34.

Poohbear2010

I was diagnosed in 2006 withHER2 gene positive +3 in my right breast. I had 4rounds of cytoxan and drayimicin, followed by 4 rounds of taxol...followed that up with 13 rounds of herceptin...and 33 rounds of radiation...started the Rx Aremidex and was on it for five years...whew!! I forgot how much I went threw...

In 2010 was diagnosed with TRiple negative...in my left breast..had a bilateral mastectomy, 4rounds of taxol, and a reconstruction surgery in 2011...but I'm still here.

I am experiencing another round of phamtom itching tonight, oncologist don't even speak about this at least not in my experience , but I get it ever so often...my primary dr has given me Rx for prednisone ...I take it a couple of days along with Benadryl and that usually clears it up for a few months.

Good luck going through your experience and God Bless

Judy

SSBNewbie

I have Stage 2a ILC in my right breast and Stage 1a IDC in my left. I had a bilateral mastectomy on March 30th and I'm still waiting for my OncoType results (I'll have 2 numbers because they are testing both tumors)

jworrell

My insurance wouldn't cover the oncotype, so I had mammoprint. The left came back as high reoccurrence and the right came back as low. I guess they will treat the one that's the worst out of the two. They each respond to different treatments. Good luck to you. It sounds very similar to mine.

Sue2009

I was Dx in 2009 w/IDC, left breast. 2013 I was Dx w/bone mets, went to MD Anderson for second opinion, they requested original slides & said I also had lobular , which was what my surgeon had thought. I did standard chem, bilateral mastectomy & radiation. May 2010 I figured I was cancer free after all that . PET scan showed mets in my right intermammary chain of lymphnodes, which was treated w/radiation, I was also started on arimidex. Still here in 2017, living w/bone mets. PET scan tomorrow to see where I am now. Definitely stay positive .

avmom

My initial diagnosis in January 2015 was stage 2, grade 3 Triple negative IDC and lots (8 cm x 8 cm x 3.5 cm) of DCIS on the right side. After chemo, I had a "prophylactic" mastectomy on the other side, and found 6.3 cm ofmixed ER, PR+ mixed DCIS and LCIS.

My chemotherapy was dose dense AC-T, which was very hard. I do have lymphedema on the right side from the first MX, permanent neuropathy, mostly in my feet, and some lingering fatigue and other issues, but I am still here!

My combination of different diagnoses hasn't had an impact on my treatment so much, but I will likely get more intensive surveillance, long term, as my MO says there really isn't a large enough population with similar DX to talk about prognosis in any statistically meaningful way. The one thing that she has told me is that no one would describe me as "low risk" for recurrence.

Hang in there. I'm no expert on treatment plans (the standard of care for TN is AC-T if you can stand it), but gather all the information you can, and get as much advice as you can. Having a treatment plan in place does help emotionally.

itfinallyhitme

I just found out yesterday that I apparently have at least two kinds of cancer, when what I thought was mostly a prophylactic BMX came back with a hidden cancer, after having a partial mastectomy last year for Padget's which then ended up with a hidden tumor associated (the tumor associated is common). But I can't help with treatment at all, since my initial diagnosis was Paget's. My head is still reeling a bit and I need to get more info. I think my BS said he found DCIS but I might be wrong - I'm pretty sure I remember hearing "carcinoma" and almost as sure I heard "in situ". I was in pain, there alone, not thinking clearly, and nothing is written in my online report, so I mean looking forwarded to speaking with my oncologist next week. He's much more thorough in explaining and logical where I get an emotional feel from the BS and he was just trying to tell me I'm perfectly fine with nothing to worry about. So I'm not going to worry, but i have questions for my onc.

SummerAngel

Avmom, you said, "My combination of different diagnoses hasn't had an impact on my treatment so much, but I will likely get more intensive surveillance, long term, as my MO says there really isn't a large enough population with similar DX to talk about prognosis in any statistically meaningful way. The one thing that she has told me is that no one would describe me as 'low risk' for recurrence."

Have you asked your MO to clarify why she says you will get more intensive surveillance and that you're not low risk for recurrence? I would guess that it's not because you had DCIS and LCIS in your opposite breast, but because you had triple-negative BC. I had invasive IDC in both breasts as well as DCIS in my left and LCIS in my right, and I'm still low risk because the invasive cancer was low risk.

Jworrell, I work with a woman who had ER/PR+ Grade 2 IDC in one breast and triple-negative IDC in the other. She was treated with two different types of chemo, one set of treatments (pretty sure it was AC-T) before I met her, the second type, Adriamycin, just after recovering from the first. She had isolated tumor cells on one side so they also gave her radiation. Seems like too much to me, but I'm not a doctor. Now, a year later, she still has pretty bad neuropathy in her feet, but besides that she's doing well.

jeanniev

I actually had 2 different types in one tumor, so I had four combinations of chemo meds

Moderators

jworrell and jeanniev, we wanted to give a big warm welcome to Breastcancer.org. We're so sorry for the circumstances that have brought you here, but we're glad you've joined us!

Please keep us posted on how you're doing, and keep using this awesome community for support, encouragement and helpful information.

Best wishes,

The Mods

jworrell

thank you everyone for responding. I start ACT chemo on May 16th, and I'm very nervous! But, I'm also ready to get started. I'm tired of waiting and worrying about chemo

avmom

Hi Summerangel,

I didn't notice your post until just now. I think that you are right that a big part of my risk profile is related to my IDC being triple negative. But I never had a lump, and the large bed of TN DCIS found in my first mastectomy did not show up in either mammogram or ultrasound. Neither did the ER+ PR+ LCIS and DCIS on the other side, so imaging isn't great for me. The fact that I managed to have four different kinds of carcinoma all at once, some TN, some not TN, is pretty rare, so there just isn't a good statistically significant population to compare to.

The recurrence risk profile for TNBC is high, compared to other types. I find it hard to read research summaries where TNBC is described as "aggressive", with a "poor prognosis". On the other hand, I'm still here, which is more than my surgeon was prepared to give me after my first MX. I was lucky to be restaged after my first MX and pathology, bone scan, etc. My staging went from anticipated stage IV right after MX to stage II. I'm just over two years from diagnosis now and expect I will do 6 month visits with my MO for a long time. It's comforting, in a way. I think I might worry more if left all on my own without a specialist checkup on a regular basis.

I have put off my exchange surgery until after the summer. I was pretty sick from chemo in 2015, and I had my TE surgery at the end of May in 2016. I saw my PS this spring, and have decided that I want to swim, golf, etc. This summer without having to factor in recovery from surger and possible complications. Also, I find that anaesthesia really takes it out of me, with more fatigue for at least a month. I'll be sitting by a lake for the month of July this year, and hope to swim every day with no incisions to worry about!

Gentle hugs to all

avmom

oh, I forgot to say anything about oncotupe and neuropathy. I didn't have oncotype done, because TNBC always means chemo. I do have neuropathy, mostly in my feet, and that was from the Taxol part of dose dense AC-T. It is better than at the end of treatment - I was numb from the wrists down when I finished chemotherapy and now just my thumbs and index fingers are affected. My feet are still affected quite a bit, but I was cane dependent for about a year and I fell a lot. Now, my cane lives in my car, for times when I am very tired, or the walking surface is slippery, or uneven, or unfamiliar. The neuropathy has been the hardest thing to be reconciled to - the transition from "healthy" to being a chronic pain patient has been rough

avmom

jworrell, I will be thinking of you as you do AC-T. You can do it! If you ever have any questions, or just want to vent about chemo, please feel free to post here or PM me. I don't like to get too detailed about side effects in a public forum, I don't want to frighten or upset people. Everyone gets some side effects, but no one gets them all. I had some SEs that weren't too bad, and some that took a bit more management.

My DH would talk about it being hard to watch me struggle with side effects. When we talked about it, it seemed to me that I was just watching, too. After all, you go in, have your treatments, and then you wait and see what happens.

I have a friend who went through treatment about a year after me. She did six rounds of TC, and didn't even get nauseated! Chemo wasn't so bad for her. She also did radiation, which I managed to avoid, and was pretty fatigued by the end of rads.

In your pocket

Mombytheriver

jworrell I had 2 different types at the same time. I was initially diagnosed with ILC on my left side and during the MRI they saw something on the right. After MRI guided biopsies they diagnosed IDC on the right. I wasn't lucky that I did not have any node involvement and hand a BMX with immediate diep flap in Philadelphia. Oncotype for left was 11 and the right was 17. You have this! Sending double hugs

pink_is_my_colour

I'm new to the forum.

I have DCIS in the right side and IDC on the left. Surgery was April 26, 2017 with clear margins in both but 2 out of 6 nodes tested positive on the left side. Now waiting for an oncologist visit to determine what type of treatment and to give a stage. I understand it's very uncommon to have cancer in both breasts at the same time.

A recent MRI also showed a 6 mm lesion on the bone to the right of the sternum. Would really like to get some good news just once!

lovepugs77

pink, I have a similar diagnosis - IDC in my left breast, DCIS in my right. I had four positive nodes, so am doing chemo

KAREN412

I have had 2 biopsies from two different reputable medical groups, and the findings don't agree. I have 2 masses in one breast about 1/4 inch apart. The first biopsy was negative for cancer. My second biopsy now says that one mass is triple positive, and the other is er-,pr-, her2+. I am not sure what to believe anymore. I actually went to a medical site and started googling. Bottom line, I am going for a 3rd opinion. My present oncologist just said it was, "weird." That didn't inspire much confidence. I am already scared. I need to know that these labs know what they are looking at.

pink_is_my_colour

I didn't realize you could get a different stage for each breast. Aren't we a lucky bunch!

I had three lumps in the left breast. The largest being 1.8 cm. I lost the nipple because one of the smaller lumps was too close. Surgeon asked me if it was okay to lose it. I said, if the choice is living or keeping. I choose living.

Let me know lovepugs how you make out with your first chemo treatment. I'll be thinking of you.

avmom

Pink,

I'm sorry to have to welcome you to this club no one wants to join. I'm also from Alberta, though I have done all of my treatment either in Red Deer (my reconstruction surgeon is there) or points south. Let me know if there is anything I might be able to share with you about treatment. Once you are through treatment, there is a wonderful organization called knight's cabin that runs incredible retreats at no cost to youfocused on health and lifestyle. I was able to attend one with my DH, and it was a great way to start to move forward.

Moderators

Pink and KAREN, welcome to Breastcancer.org. We're sorry that you are here, but glad you've found the BCO Community!

Karen, we understand your uncertainty and why you're going for a 3rd opinion! If it helps, here's an article on Getting a Second Opinion from our main site, designed to walk you through the second opinion process: how it might help you, what it typically involves, and how you can make sense of the results.

Thinking of you. Let us know what you learn on your next appointments!

The Mods

avmom

jworrell, I hope your first chemotherapy infusion passed without incident, and that you are resting at home with lots of support. One down, seven (?) to go!

Avmom

jworrell

one down and 4 to do! After that it's 12 weekly treatments of the t part of a

jworrell

yes I hadductile in L and lobular in the R. The left was only 1 cm, but the right was 5 cm. Neither showed up on the mammograms. I has ulrasound that found the L, I had an MRI to find the right. Doesn't give me much confidence in mammograms!

avmom

jworrell, you are having 5 AC? I had four AC on a 14 day cycle, then 4 dose dense taxol, also every 14 days. Twelve weekly taxol seems to be more common - I think that there might be some evidence that the risk of neuropathy is a bit lower with 12 weekly than with 4x 14 days.

Hydrate, hydrate, hydrate.

Gentle hugs.

Avmom

jworrell

I will have 4 rounds of AC, over 8 weeks. Then I'll to T over 12 weekly treatments. The first round was rough!! I was beginning to think that I wasn't going to make. I feel better now after the third day. And I think I finally have my meds right this tim

avmom

jworrell, I'm glad you are feeling better.hang in there! Please be gentle with yourself - days 4 and 5 can be a bit rough, too, when the steroids wear off. I usually found that the dex provided a bit of artificial energy, but I only had it for the day of and two days after infusion day. Although I never found this, therewere some people in my chemo group that all started the same month who found they had insomnia for the first few days. The online shopping sites were busy late at night!

Debbs74

I had two tumors in one breast triple negative 2.7 cm and 1cm her2, crazy! had mastectomy no nodes involved, still contaplating treatment.Went to fox chase in Philadelphia to see options, they said 80% it won't come back with out chemo 90% chance it won't come back with chemo, should I risk not putting poison in my vains?

BarredOwl

Hi Debbs74:

I wonder if you understood your recurrence risk estimates and the estimated benefit of treatment correctly or not.

I am a layperson and could be wrong, but the estimate above almost sounds like an estimate for a 1 cm HER2-positive tumor only???

Accurate understanding of recurrence risk (in light of both tumors) and the risk reduction benefit of systemic therapy is critical to understanding your risk/benefit profile and informed decision-making. Please contact Fox Chase and request confirmation of your understanding of your estimated recurrence risk without treatment and with treatment, and be certain to remind them of the features of both tumors when you request this information. You may wish to request an explanation in writing.

Ask what type of recurrence risk estimate is being provided (e.g., distant metastatic recurrence risk? other? 10-year? other?) and whether it accounts for both tumors.

Best,

BarredOwl