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All TopicsForum: HER2+ (Positive) Breast Cancer → Topic: TRIPLE POSITIVE GROUP

Topic: TRIPLE POSITIVE GROUP

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Jan 31, 2011 05:30AM - edited Dec 10, 2012 06:55AM by TonLee

TonLee wrote:

This is primarily for people who find themselves with THREE +'s by their diagnosis. 

If you are new to breast cancer, please click on the link below and read.  It is "What I Wish I Knew At the Beginning of Treatment."

http://community.breastcancer.org/forum/6/topic/797454



IDC, 2cm, Stage IIIa, Grade 2, 4/4 nodes, ER+/PR+/HER2+, Skin Sparing uni-MX with TE, TCH, Rads Dx 9/14/2010, IDC, 2cm, Stage IIIA, Grade 2, 4/4 nodes, ER+/PR+, HER2+
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Aug 17, 2017 11:07AM BJI wrote:

PoseyGirl

I have noticed changes in my eyes, told me SE from taxol/herceptin. I started using eye drops morning and night (make sure they have no preservatives) also told me wait several months before having eye exam. I have lots of dryness in my nose also, using saline nasal spray and ayr gel at night. I just finished my taxol and start next week herceptin only, hoping the dryness gets better.

Bev Dx 4/11/2017, IDC, Right, 1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR+, HER2+ (FISH) Surgery 4/26/2017 Lumpectomy: Right Radiation Therapy 5/8/2017 Balloon-catheter: Breast Chemotherapy 5/30/2017 Taxol (paclitaxel) Targeted Therapy 5/30/2017 Herceptin (trastuzumab) Hormonal Therapy 9/13/2017 Arimidex (anastrozole)
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Aug 17, 2017 11:18AM PoseyGirl wrote:

Thanks, BJI...I was done chemo late October, but have still got 2 Herceptin treatments left. I noticed the eye blurring moreso over the past month.

I will try all the drops you mention - thanks!

Re: prunes...wow. That's a lot of prunes. If we buy the juice, I wonder how many cups that is? I don't mind drinking a glass a day...

Radiation Therapy 1/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Dx 6/23/2016, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 7/11/2016 AC + T (Taxol) Targeted Therapy 9/15/2016 Herceptin (trastuzumab) Surgery 11/29/2016 Lymph node removal: Right; Mastectomy: Right Hormonal Therapy 12/21/2016 Femara (letrozole)
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Aug 17, 2017 11:21AM - edited Aug 17, 2017 11:22AM by ElaineTherese

debiann,

You're right that BMX OR LX + rads are both valid options. For me, LX + rads was less "aggressive" because I did not want reconstruction and the multiple surgeries that often accompany it. I wanted to keep my breasts and their sensation, even though my right breast would be (and is) a little smaller than my left breast. I also wanted a shorter recovery time from surgery. For me, reducing surgeries and recovery time were important because I was 46, working full-time, and caring for two special-needs sons. Fortunately, rads didn't really do much to my skin, and it was a part of treatment that was easy to incorporate in my life.

In some cases, it is difficult to tell breast cancer patients that BMX will reduce the likelihood of rads because the doctors do surgery + SLND first. Let's say they do the surgery, and find positive nodes (even if they didn't show up on imaging). Then, the patient might be recommended radiation, even if he/she has had a BMX.

I guess it boils down to whether or not the doctors are sure that the patient is node-negative. In your friend's case, she had DCIS, so it would have been virtually impossible for her to have positive nodes (unless there was an invasive component that the doctors missed). For her, yes, her doctor could have assured her that if she had a BMX, radiation would not be recommended.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Aug 17, 2017 12:35PM debiann wrote:

You are right, Elaine Therese, there is always a chance a positive node could be found and rads would be recommended anyway, but there are many instances when it is almost certain an mx would mean no rads, and that, I don't think, is properly presented to many patients.

I've heard too many women say "my doctor said I didn't need an mx, that would be too aggressive". That's what I have an issue with, the doctor making the decision. Perhaps, if they knew their options some would prefer to skip rads, for whatever personal reasons. For women who have no desire to reconstruct, in my opinion, the mx is the LESS aggressive treatment over lx/rads.

"I live knowing it will be ok when I'm not." Dx 3/2014, IDC, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 4/3/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 5/8/2014 Herceptin (trastuzumab) Chemotherapy 5/8/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 9/29/2014 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/5/2014 Arimidex (anastrozole)
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Aug 17, 2017 12:57PM HapB wrote:

aliceagnes. Thank you for the link. I am of the very strong belief that our cancer and general health is a result of what we put into pur bodies. The problem is that doing studies on diet is not funded. Imagine if they hecer found out that diet was just as effective as a patented chemo or drug. There would be a lot of people who would lose a lot of money! Cancer and pharmaceuticals are big for profit businesses! Sad, but true

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Aug 17, 2017 01:06PM HapB wrote:

debiann, doctors make recommendations based on evidence of what is successful. The statistics show there is no difference in the bmx and lx as far as recurrence free survival goes. Surgery and removing body parts is not desirable if it serves no medical purpose. I had the lx and radiation, which has been far less disruptive or invasive as surgery. If I had insisted on a bmx, I am not sure whether insurance would have paid for it, because it would have been against medical advice.

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Aug 17, 2017 01:30PM AliceAgnes wrote:

HappyAbout those 10 prunes:

Some suggest gradually working your way up to that many, starting with 3 one day, 4 the next and so on.

I find I can eat 5 in the morning with my usual breakfast without suffering any untoward results. I plan to work my way up to 10, though, by eating the other five later in the day, probably with supper. I'll post a warning if that experiment fails!

(I must admit that I don't mind the taste of prunes.)

Dx 3/6/2017, IDC, Left, 1cm, Stage IIA, Grade 2, 3/20 nodes, ER+/PR+, HER2+ (FISH) Targeted Therapy 3/26/2017 Perjeta (pertuzumab) Chemotherapy 3/27/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/27/2017 Herceptin (trastuzumab) Surgery 8/28/2017 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left Radiation Therapy 10/4/2017 External: Lymph nodes, Chest wall Hormonal Therapy 10/24/2017 Arimidex (anastrozole)
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Aug 17, 2017 01:36PM debiann wrote:

HapB,

Its my understanding that survival is the same, but the odds of having a recurrence or new primary are less if you have removed the breast tissue.

But that's not what I am talking about. While you feel there is no need to remove body parts if it is not necessary, others may feel that there is no need to subject the body to radiation if avoiding rads is as simple a removing an unnecessary body part. Some are less attached to their breasts than others. Read some of the posts from women who have life long damage from radiation, its not always a walk in the park. My friend is having issues nine years later. She wishes her doctor would have explained at time of dx that she could have an mx and skip rads. She did not know that was an option.

All options should be presented to the patient to make the decision. I believe insurance will cover a bmx, or lx/rads. I'm sure radiation isn't cheap, I can't imagine there is much difference in cost, particularly if the patient does not reconstruct.

"I live knowing it will be ok when I'm not." Dx 3/2014, IDC, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 4/3/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 5/8/2014 Herceptin (trastuzumab) Chemotherapy 5/8/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 9/29/2014 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/5/2014 Arimidex (anastrozole)
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Aug 17, 2017 02:14PM Soxfan75 wrote:

Hi Ladies - I don't post that often but I was hoping to get your input. Six weeks ago, I finished six rounds of adjuvant TCHP. I'm scheduled to receive Herceptin for a year and my MO just called me and told me my insurance company approved continued infusions of Perjeta as well. I know this is not the norm and I'm wondering if anyone else has been offered this option. My MO said we would weigh the risk and benefits of Perjeta and if there are any issues, we can discontinue it. I'm not sure how to feel about this. On the one hand, I'm grateful my insurance company approved it because I want to throw everything at this cancer that I can, but I'm also apprehensive since it sounds like I may be a guinea pig. Thoughts?

Dx 1/13/2017, IDC, Right, 1cm, Grade 2, 2/4 nodes, ER+/PR+, HER2+ (IHC) Surgery 2/6/2017 Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Targeted Therapy 3/23/2017 Perjeta (pertuzumab) Chemotherapy 3/23/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/23/2017 Herceptin (trastuzumab) Radiation Therapy 8/13/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 17, 2017 02:57PM - edited Aug 17, 2017 03:33PM by Cherry-sw

Thank you, HapB, I am reading a thread on this subject right now

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/17/2017 Lumpectomy: Left Targeted Therapy 8/20/2017 Herceptin (trastuzumab) Chemotherapy 8/20/2017 Taxol (paclitaxel)
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Aug 17, 2017 03:16PM FleurDeLis49 wrote:

Just wanted to say "thank you" to all of you who have posted here! You've been a great source of information & inspiration as I've started on this journey!

I had my lumpectomy & SNB on Tuesday, and the three nodes they took appeared to be clear. I'll get final pathology on Wednesday when I meet with my surgeon again. I have not met with an oncologist yet; I imagine that will be the next step.

Congrats to CoachVicky & HelenWNZ!

SpecialK, thanks so much for sharing your knowledge & experiences! If anyone has been given a difficult but important gift in life, it is you with your ability to coordinate so much information & break it down for those of us who are less technical and/or new to cancer. You truly are special!

HapB, am I correct in saying your course of treatment has not included chemo? Is that under a trial or the choice of you & your care team based on your particulars?

Dx 7/18/2017, IDC, Left, <1cm, Stage IA, Grade 2, 0/8 nodes, ER+/PR+, HER2+ (DUAL) Surgery 8/15/2017 Lumpectomy: Left; Lymph node removal: Left, Sentinel, Underarm/Axillary Chemotherapy Taxol (paclitaxel) Targeted Therapy Herceptin (trastuzumab)
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Aug 17, 2017 03:57PM - edited Aug 17, 2017 07:55PM by HapB

fleur, long story. I started out doing the Taxol+Herceptin and dropped the T after a series of events made it clear that I could not do it alone. I would have finished if I could have

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Aug 17, 2017 05:28PM LTWJ wrote:

soxfan75- I am on 4/6 TCHP chemo. I will have surgery, then radiation then every 3 week Hercepton/Perjeta infisions. That's what I have been told. My husband was confused too by having both but that's what they said. I'm having a terrible time with diarrhea so they are changing my chemo levels for the T and Perjeta because they both cause this. This may change the Perjeta part later then we'll have to see.

I had a question about the radiation too, in that my Breast dr has told me that even if tne tumor has shrunk after chemo I'll be looking at a mastectomy and radiation. She said that radiation is required to sterilize the remaining breast tissue, even after a mastectomy. I will have 30 sessions after my surgery :(

I had a 4 cm, no nodes, nothing anywhere else on my CT scan. It all just seems like overkill to me :( but I have to trust them

Dx 4/14/2017, ILC, Left, 3cm, Stage IIA, Grade 2, 0/1 nodes, ER+, HER2+ (FISH) Chemotherapy 6/1/2017 Chemotherapy 6/2/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 10/10/2017 Lumpectomy: Left Surgery 11/17/2017 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Targeted Therapy 12/10/2017 Herceptin (trastuzumab) Hormonal Therapy Arimidex (anastrozole)
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Aug 17, 2017 05:48PM - edited Aug 17, 2017 05:55PM by HapB

debianne, I was told there was no difference in recurrence rates. I guess I would like to see some stats on that. I didn't research that, just accepted it. I thought that was well established by now. Usually a mx involves multiple surgeries and multiple levels of risk. It is not necessarly an attachment to breasts which dictates standard of care. A double mx is no longer the standard of care because the statistics don't warrant it. I know there are some women who feel less anxiety by having an mx, and that might be helpful to many.

I have had radiation 6 years ago for an unrelated inoperable stage 3 tumor and did not have a problem. It was successful. I have 2 more radiations to go for this cancer and so far, no problems. I understand that there are risks involved in the long term.

I think that doctors usually offer whatever treatment is the standard of care at the time.

Here is an article that I just read.

https://www.bcaction.org/2015/12/11/sabcs-2015-com...

Who knows what is ahead, some of us who had lx may end up having mx in the future if there is a recurrence.

I am glad that you are happy with your decision. It is a very, very difficult decision to make.

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Aug 17, 2017 06:01PM ElaineTherese wrote:

Hmm, HapB, I believe that survival rates are statistically the same for both populations. But, yes, those of us who chose lumpectomy + rads are slightly more at risk for a recurrence because we have more breast tissue left.

For me, a local recurrence in and of itself is not a problem. It's mets that kill, not cancer localized in the breast. Of course, no one wants to go through surgery, etc., again. But, my #1 fear is mets.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/22/2014 AC Targeted Therapy 9/16/2014 Perjeta (pertuzumab) Targeted Therapy 9/16/2014 Herceptin (trastuzumab) Chemotherapy 9/16/2014 Taxol (paclitaxel) Surgery 1/11/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/24/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/8/2015 Breast, Lymph nodes
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Aug 17, 2017 06:37PM - edited Aug 17, 2017 06:37PM by Lita19901

This Post was deleted by Lita19901.
Dx 6/24/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/20/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Aug 17, 2017 07:27PM Lita19901 wrote:

Just a piece of information regarding the recurrence rate of lumpectomy/rads vs. mastectomy:

Johns Hopkins statement concerning the relative recurrence rate of lumpectomy/rads vs. mastectomy

From the JH website:

"Will having a double mastectomy lower my chances of recurrence?

Regardless of whether you choose to have a lumpectomy or mastectomy, the recurrence rate remains at approximately 10 percent in the treated breast and about 0.5 percent per year in the breast that has not been treated. The risk of getting a different cancer is about 2 percent."

Dx 6/24/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/20/2017 Lumpectomy: Left; Lymph node removal: Sentinel
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Aug 17, 2017 07:29PM Tresjoli2 wrote:

My MO believed that I had postpartum breast cancer (PPBC) which is an aggressive cancer in women under 45 years of age who develop breast cancer within 5 years of having a baby. My daughter was only 2 when I was diagnosed, and I had two consecutive miscarriages prior to delivering my daughter full term. I was basically pregnant off and on from October of 2010 to May of 2012. The doctors think that, followed by estrogen BC pills, fueled the fire.

There is a lot of research currently being done on PPBC.

Diagnosed at age 40 after going for my baseline mammogram. Dx 4/21/2015, IDC, Left, <1cm, Stage IA, 0/2 nodes, ER+/PR+, HER2+ (FISH) Dx 4/21/2015, DCIS, Left, 4cm, Stage 0, Grade 3 Surgery 5/18/2015 Lumpectomy: Left; Lymph node removal: Sentinel Targeted Therapy 6/19/2015 Herceptin (trastuzumab) Chemotherapy 6/19/2015 Taxol (paclitaxel) Chemotherapy 8/7/2015 Abraxane (albumin-bound or nab-paclitaxel) Radiation Therapy 9/24/2015 Whole-breast: Breast Hormonal Therapy 10/11/2015 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 17, 2017 07:50PM HapB wrote:

lita, I don't know how they get the 10%. Is that untreated? Is that all types of BC? Does that number vary with the different chemo regimens or if someone does not have chemo, etc.

I was told that if I did nothing, my chance of recurrence was 25% and if I did chemo, radiation, herceptin, and AI, it was 15%.

It is frustrating trying to get the real stats.

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Aug 17, 2017 07:52PM HapB wrote:

tres, you sure have been through a lot! God bless you! What do you mean by estrogen BC pills?

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Aug 17, 2017 07:53PM HapB wrote:

elaine, yes. We all fear mets and recurrence. It is all a big roll of the dice!

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Aug 17, 2017 08:33PM Taco1946 wrote:

Back to symptoms of Taxol and Herceptin. When I did both, I had bloody, snotty nose, significant eye changes (which haven't corrected), and some constipation which I learned to anticipate and get ahead of before each infusion. Insomnia the night of chemo from the steroids. I lost a toe nail on each foot but I had gel fingernails that held up the whole time. The SE which caused me to quit after 8 treatments was very painful neuropathy in both hands and feet. I felt good with just Herceptin. Joint pain with the AI but it's better now that I took the suggestion to ask for Teva. (By the way, Hap, my Medicare and my supplement has fully paid for treatment but I know I have a VERY good supplement.) Still have 5 months of Herceptin to go.

For now, I'm comfortable with the decision to do AI's but know I have the option to stop. For now, I am trying to think of my BC as a chronic illness that needs attention. I take medication for blood pressure and cholesterol too. I did switch from taking it in the evening to morning because I wasn't sleeping as well as I had been. I know many of you are more careful of your diet than I am but I have increased my exercise routine. Those too are choices we can make.

I had brachytherapy within 10 days of surgery which I highly recommend if you are a candidate. I had some breakthrough of the radiated site when I started chemo but that has healed nicely.

Sadly, it seems to me, that even after we look at all the statistics, some of us will have recurrences and some won't. Each of us has 100% and zero % we just don't know which is which. And we each have to make decisions about quality of life and longevity. My mother died at age 96 of senile dementia after having had melanoma 30 years earlier. I know I don't want to die like she did.

Sorry if I'm rambling tonight.


Dx 11/22/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ Radiation Therapy 12/29/2016 Balloon-catheter: Breast Chemotherapy 2/3/2017 Taxol (paclitaxel) Targeted Therapy 2/3/2017 Herceptin (trastuzumab) Hormonal Therapy 12/4/2017 Femara (letrozole) Targeted Therapy Surgery Lumpectomy: Left; Lymph node removal: Sentinel, Underarm/Axillary
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Aug 17, 2017 08:50PM HapB wrote:

Taco, I think i have a good Medicare supplement, it was the most expensive I could buy in my state. What I don't know is how much they will cover. It feels odd that I have not received any bills at all . I also don't know about my part D plan and if the AI will be covered.

I meet next week with my MO about choosing an AI. What is Teva? Which one are you on? Does your part D plan cover it?

Wow, that your Mom lived such a long life. You have good genes. I think because my Mom died in her seventies, I don't have the expectarion of a long life. I have been a lot sicker than she ever was. It is all in God's hands

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Aug 17, 2017 09:23PM - edited Aug 17, 2017 09:34PM by debiann

My BS said the survival rate was the same for MX or LX/rads, but the risk for local recurrence or a new cancer is greater with lx because, obviously, there is breast tissue remaining.

I had an lx first, but had close margins and was going to need an lx redo, then rads.I believe about 25% ??? of lx's need to be redone, sometimes more than once, because of the margins, so even with lx multiple surgeries are sometimes required. During chemo, while reading this forum, I learned that since I knew I was node negative and the tumor was not near my chest wall, I would not need rads if I did an mx. I repeat - I read about that here on this forum - my BS did not discuss this option with me - that's what I have an issue with.

My MO (an Egyptian man),said he could understand getting a uni mx, but why did I want a double. He asked, "What does your husband think of this", lol. I responded that my husband thinks they are my breasts and I can do what I want with them.

My cardiologist was slightly concerned that the rads were going to be close to my heart, but didn't say I shouldn't do them. I felt Herceptin was going to be hard enough on my heart, so I was happy to skip rads.

But that's my personal decision, I'm not saying someone else shouldn't do rads. I'm saying doctors should explain the options better. My doctor - many doctors - never explain that with an mx there is a potential to skip rads.

Hap, I understand that lx with rads is the standard of care, so that's why doctors don't bother to explain there are other options, but why is it the standard of care? That is my point. Who has decided that saving a breast is that important? Someone like my MO who wanted to know about how my husband felt about my breast? Patients should decide what is important to them, doctors should just be giving all the facts.

My breasts were old and saggy, I didn't love them. They were not worth saving, especially if it meant I had to be radiated to keep them. Chemo was enough poison for me. I would have liked to have skipped that too.


"I live knowing it will be ok when I'm not." Dx 3/2014, IDC, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 4/3/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 5/8/2014 Herceptin (trastuzumab) Chemotherapy 5/8/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 9/29/2014 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/5/2014 Arimidex (anastrozole)
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Aug 17, 2017 10:01PM - edited Aug 17, 2017 10:03PM by PoseyGirl

Tresjoli,

I have wondered about the role pregnancies had for me too. I was 47 when diagnosed. I had my daughter at 40, but was pregnant and miscarried three times between 42 and 44. My GP put me on birth control pills at 45 because my periods were all over the place. I believe all this mayhem hormonally, combined with other factors such as extremely dense breasts, created that perfect storm. I had always hoped that my lengthy breastfeeding timeframes would protect me to a degree (5 years of breastfeeding in total between 2 children and perhaps it did for some time, but I just don't know.

Radiation Therapy 1/11/2016 Whole-breast: Breast, Lymph nodes, Chest wall Dx 6/23/2016, IDC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+, HER2+ (IHC) Chemotherapy 7/11/2016 AC + T (Taxol) Targeted Therapy 9/15/2016 Herceptin (trastuzumab) Surgery 11/29/2016 Lymph node removal: Right; Mastectomy: Right Hormonal Therapy 12/21/2016 Femara (letrozole)
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Aug 17, 2017 11:27PM HapB wrote:

posey, I think that they do know that birth contol pills and hormone replacement therapy and some fertility drugs that alter hormones do cause breast cancer. I know during intake they asked me about those things. i too was 40 when I had my child

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Aug 17, 2017 11:41PM HapB wrote:

debiann, I am glad that you are happy with your decision. These are tough choices to make. There was a recent article that I read that showed a geographic map and the disparities of where women were having the most mastectomies with early stage breast cancer and it was in the middle of the country. I am not sure why that would be unless doctors in certain areas were recommending mastectomies over breast conserving surgeries. I was prepared to have a mx but the doctors all told me that was not going to help me. I am glad that women are not routinely having breasts removed anymore unless it is necessary. It is a greatthat they have made such advancements in breast conserving treatment, especially for younger women.

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Aug 18, 2017 12:53AM debiann wrote:

I'm in the northeast and I do think the doctors lean toward lx with rads. Again, there's the problem, I don't think they should "lean", just present the options. Someone, somewhere may have a very good reason to want the alternative, and they should be able to make an informed decision.

When I read on BCO that for someone in my situation, no node involvement, an mx would mean I would not need rads, I went to my BS and said "Am I understanding this correctly, for me, doing an lx with rads is not to save my life, its to save my breast. I can have the same outcome by having an mx and I don't need to have any rads." She said yes, that was the case. I was sold. I told my husband, "I'm not doing rads just to save these saggy old boobs."

I think it was wrong for your doctors to tell you that an mx had no benefit for you. How do they know what benefits you? There is more to this decision than just ultimate survival statistics. Some women choose mx simply because they need to travel a long distance for rads and they don't have daily transportation. I suspect that's the reason for more mx's in the midwest. There could be many reasons one would prefer to skip rads, but if you aren't told that's an option, how can you make the best decision for you? Having breasts is not everyone's top priority.

My rant today on this subject started because of a co-worker who was not properly informed of options nine years ago when dx with dcis. She was told the treatment was lx with rads, neglecting to say she could do mx without rads. After nine years of mammo callbacks for questionable issues and biopsies, she asked to have a double mx, but the reconstruction is now compromised on the side which she had rads and may not take. She said that if she would have been told nine years ago that she could have have an mx with recon and no rads, that would have been the way she would have went. She should have been given all her options. I almost had an lx redo with rads because I wasn't given my options. I thought I needed rads with either the mx or lx. These can't be the only two examples of doctors not providing enough information for the patient to make an informed decision that benefits them, not someone else's ideal of what benefits them.

Again, not to discredit anyone who chooses to do rads to be able to save their natural breasts, its a fine choice if that's what you want to do. I'm only complaining about not being told that for some, there is an alternative approach.

"I live knowing it will be ok when I'm not." Dx 3/2014, IDC, 2cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR+, HER2+ Surgery 4/3/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 5/8/2014 Herceptin (trastuzumab) Chemotherapy 5/8/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 9/29/2014 Mastectomy: Left, Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Hormonal Therapy 11/5/2014 Arimidex (anastrozole)
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Aug 18, 2017 01:37AM - edited Aug 18, 2017 10:00AM by Cherry-sw

Tresjolie, Posey, I was uncomfortable to discuss it first because for some reason I felt that I couldn't, mostly because we kept it a secret my husband and I but now when you mentioned it I have also been wondering If three of my last pregnancies have caused the bc. We have been trying to conceive another child for two years and then 2,5 years ago I got pregnant but it went wrong, a few months later another pregnancy that ended early and 6 months later one more time. So, same here three unsuccessful pregnancies between 42 and 44. My last pregnancy ended 15 months ago. After that I have been depressed for months and we were really struggling with our marriage, I went to therapy and finally decided that we have to go on with our lives and several months later I was diagnosed when things really just got better. Only twice I took ovulation pills, one of the se was cancer but my gynecologist said that the risk was not big since I only took them twice. I have also been taking large doses of folate supplement. No fertility treatment, no birth control pills, no bc in the family. Now I blame myself for that, I was pushing for another child while my husband was content with those two we already had and I was so sad that he did not want it as much as I did. Now I regret it, no baby anyway and now this bc. So, I am with you on this one, can't stop thinking about what if I could have let it go, Cherry

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/17/2017 Lumpectomy: Left Targeted Therapy 8/20/2017 Herceptin (trastuzumab) Chemotherapy 8/20/2017 Taxol (paclitaxel)
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Aug 18, 2017 02:06AM Cherry-sw wrote:

Debiann, I have been following your discussion and I just wanted to say that bmx even If it removes the brest tissue it does not remove all mammary glands because they still may be there above the brest, sometimes as high up as clavicle and also under the arm. My tumor was on the same level as my armpit, they missed in on mammogram four months before I felt it myself and the tech had hard time to get it between the plates later, she needed a special plastic device that could hold it in place. I was not even sure it was bc, I started to search the web on bc tumor location and this is how I found this site. I started a thread and some people replied, all of them having bc outside the brest, or I mean what we usually consider the breasts. I mentioned it to the doctors that when you get the information on how you have to do your monthly exams it never says that you have to check up to theclavicle. I discovered my in the shower and it felt flat from the beginning and then swelled after the biopsy. How much tissue do they remove when they do bmx? I doubt they remove it all but of course the major part. I was told that my option was lumpectomy and rads, I live in Europe, everything is centralised where I live I cannot opt for mastectomy. Cherry

Dx 6/28/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 7/17/2017 Lumpectomy: Left Targeted Therapy 8/20/2017 Herceptin (trastuzumab) Chemotherapy 8/20/2017 Taxol (paclitaxel)

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