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Topic: Radiation for ER-PR-Her2+ women? Yes/No?

Forum: HER2+ (Positive) Breast Cancer —

Testing, treatment, side effects, and more.

Posted on: Aug 14, 2019 02:14PM

SamRuns wrote:

Hi all,

I completed 6 rounds of TCHP in late May, had bilateral mastectomy late June with a great outcome - no cancer cells in breast tissue or in the 7 lymph nodes removed. Now, however, I had a shock - my MO asked me to see a radiation onc to make sure I didn't need radiation. To my surprise, the RO said she recommends 25 sessions because of my age (I'm 42) and "just to be sure." I do NOT want to do radiation and am wondering about other who are ER-PR-Her2+ . Have other women done this? What was the outcome? Do I really need to do this? I have 11 more rounds of HP starting this Friday. Any experiences or advice would be welcomed. Thanks :)

PS - I searched high and low on the radiation boards for this info, but most women there had hormone positive dx.

I love to run! Last marathon 12/9/2018 - with undiagnosed BC Dx 1/14/2019, Left, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2+ Chemotherapy 2/4/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2019 Herceptin (trastuzumab) Targeted Therapy 2/4/2019 Perjeta (pertuzumab) Surgery 6/26/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 14, 2019 03:05PM BellasMomToo wrote:

I elected to have a UMX primarily to avoid radiation. Fortunately I didn't have node involvement and my tumor wasn't too close to the chest wall so my BS & MO did not recommend radiation. (Would they have recommended radiation if they didn't know I didn't want it? That I don't know.)


Dx'd at age 56. Tumor found by my annual mammogram -- cancer can grow fast! Dx 10/6/2016, IDC, Left, 2cm, Grade 2, 0/1 nodes, ER-/PR-, HER2+ (IHC) Dx 10/6/2016, DCIS, Left, Stage 0, ER+/PR- Targeted Therapy 11/2/2016 Herceptin (trastuzumab) Chemotherapy 11/2/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 11/2/2016 Perjeta (pertuzumab) Surgery 3/27/2017 Lymph node removal: Sentinel; Mastectomy: Left
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Aug 14, 2019 03:19PM MinusTwo wrote:

Sam - yes I had neoadjuvant TCHP, then surgery. Even though the surgeon got 'clean margins', there was no real questions about not having rads. I had 25 sessions (5 weeks - 40 gray). Luckily I didn't have to have a 'boost'. Since I has personal experience about 'rogue' mini-micro cells escaping even though there were "clean margins" and showing up later, I didn't argue. And I was 70 at the time, and I made sure to have the discussion about what's relevant to giving me the best quality of life.

Actually rads was the easiest of everything. It took more time changing my clothes than getting zapped. I drove myself and never had any problems - just increasing fatigue as time went on.

Then yes, I did have the balance of the year of Herceptin (17 rounds total) but did not continue the Perjeta. I had lost 60 lbs with the chemo and really didn't need to loose any weight to start with. Maybe TMI, but the Perjeta gave me fierce diarrhea.

Good luck with your choices.

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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Aug 14, 2019 05:47PM SamRuns wrote:

Thanks BellasMom and MinusTwo - I appreciate the responses. I'm trying to do some research too but not having too much luck...

@BellasMom - my nodes were clean and had a complete pathologic response to TCHP so it's so frustrating that some doctors want to recommend radiation while other don't. It's confusing.

@MinusTwo - Thanks for all the details - definitely gives me more to think about. My mom had a recurrence too, but that was even after she had radiation. As for the HP infusions, I know about Perjeta unfortunately...such a pain in the butt Bawling I get started again on Friday.

Thanks again both!

I love to run! Last marathon 12/9/2018 - with undiagnosed BC Dx 1/14/2019, Left, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2+ Chemotherapy 2/4/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2019 Herceptin (trastuzumab) Targeted Therapy 2/4/2019 Perjeta (pertuzumab) Surgery 6/26/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 14, 2019 08:19PM Beesy_The_Other_One wrote:

Sam,

It's pretty impressive that you ran a marathon with undiagnosed breast cancer; I had a friend tell me just yesterday over lunch that she was in the best shape of her life at the time of her diagnosis. What amazes me always is that few of us have any sense of the monster that has invaded our bodies--I surely didn't!

My tumor was behaving very aggressively right after diagnosis and an MRI showed that it had invaded the nipple two weeks after the 1.5 cm biopsy measurement. So in two weeks it had more than tripled in size, at least in one of the three dimensions measured. I had chosen BMX to avoid radiation but suddenly I qualified for Perjeta AND radiation! I had the best result possible, a complete response, as you did. I was bothered by the fact that even before I had surgery, I started my 7th cycle and it was Herceptin only, so I asked why, when my MO didn't know I'd had a pCR? When I inquired, as I remember, he pointed me to the Tryphaena Trial as the reason he did not continue Perjeta.

My MO felt that given the aggressiveness of the tumor (not unusual for HER2+), he "didn't want me to quit now." I believe that oncologists are really working to not over-treat in this day and time, but if there's some factor that is of great concern, they will be more aggressive. In your case, you are young and they want you to live a long time and in my case, the fact that it got to the nipple, it changed the game. Unlike our ER+ sisters, even though they suffer with estrogen suppression, they have more options than we do if our treatments do not succeed.

I had six weeks of radiation, with five boosts. Like MinusTwo (best username ever!), I found it to be the easiest part of my year's worth of treatment. Sure, I was lobster red (even the rad techs winced daily) because I'm very fair skinned, but it was not accompanied with the pain of a sunburn. I wanted to know I'd done all I could and all that was recommended.

Today I had my last Herceptin. One year ago, it was hard to imagine where I'd be and how I'd be feeling at this point (or in my darker moments, would I be alive?). Sure, I look like Dash from the Incredibles, but I'm very much alive and not wearing a wig! I can live with that, even if my hair is growing at a snail's pace. Next up: Nerlynx.

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Aug 14, 2019 09:33PM DATNY wrote:

I am copying here one of my older post on this topic.


had pcr following multiple tumours in the same breast , one confirmed positive node and "numerous" others that lighted up on MRI.I had bilateral mastectomy following pcr (also had a mutation of unknown significance, and I was relatively young at 44).

I struggled with the decision to do radiation. My RO was honest and told me there are no clear statistics to understand if radiation would benefit someone like me. The risks were better understood. He, however, still strongly suggested to do the cut and chest area, and was only mildly inclined to do the underarm. In the end I did everything.

What weighted in my decision was the fact that there is a so called abscopal effect reported for radiation. I was thinking that, if there are still cells left, the rads will help get rid of them, and there would also be a small chance this will help eradicate tumors in other places.

Also, especially for someone like me with multiple tumors, would be so challenging to inspect the whole (large) breast for pcr.

I was hormone negative her2 positive.

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Aug 15, 2019 03:20PM SamRuns wrote:

@Beesy_The_Other_One and @DATNY

Thanks so much for sharing your stories.

The RO basically said the same as your MO Beesy - that it was aggressive and that it was worth the chance it would remove the potential cancer cells remaining. It's just hard to reconcile hearing "complete pathological response" to just kidding, you get to think about radiation now. And CONGRATS on your last Herceptin infusion! That's got to feel good! Mine will be sometime next year...hoping to start up again tomorrow. Come on bloodwork...cooperate!!

DATNY, I had to google abscopal effect - still figuring out what it is. I gather it's good and I get it from radiation ;) I'm beginning to lean towards doing it. I guess I can always stop midway through if the SEs are horrendous.

Thanks again for all the help! Much appreciated :)


I love to run! Last marathon 12/9/2018 - with undiagnosed BC Dx 1/14/2019, Left, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2+ Chemotherapy 2/4/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2019 Herceptin (trastuzumab) Targeted Therapy 2/4/2019 Perjeta (pertuzumab) Surgery 6/26/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Aug 15, 2019 03:24PM MinusTwo wrote:

Sam - I can't think of even one report that the SEs from radiation were horrible while undergoing rads. And I've been posting/reading here for 8 years. Yes, there are some side effects to consider that may come up down the road, but you can discuss those with your RO.

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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Sep 13, 2019 08:34PM Margun wrote:

I thought if one have bmx and no nodes are involved, there is no need for rads

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Sep 14, 2019 11:13AM MinusTwo wrote:

It's my understanding that if you have a lumpectomy you will usually have rads. If you have a BMX it depends on lots of other factors.

Note - I had a bilateral mastectomy for DCIS with clean margins, SNBs were clear and no other treatment. Then 2 years later I had a local recurrence to a lymph node by my collarbone. That is when it changed to IDC and HER2+ so I had the full ride with neo-adjucant TCHP chemo, ALND surgery, adjuvant AC chemo, rads & Herceptin for the rest of the year.

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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Oct 16, 2019 06:08AM Brooklyn1234 wrote:

I didn't get radiation for my her2+ tumour 10 years ago. I really didn't want it because my family has a history of radiation being used recklessly back in the 50s and I grew up with a bit of a phobia of it. My breast was full of DCIS so I had to get a mastectomy, and so there was no question I would avoid radiation for my 1 cm node-negative cancer.

However.....I was just diagnosed with a recurrence, which is highly, highly unusual ten years out. My doctors are all shocked, which should be very comforting for folks to read because it shows they just never see it. So please bear that i mind for what I'm about to say next: My oncologist thinks the surgeon left behind a bit of tissue with DCIS in it. I have been hearing about preliminary research suggesting women with DCIS have better survival rates if they opt for lumpectomy and radiation versus just mastectomy, and I have been really regretting my decision back then. My current oncologist said radiation would have reduced my rate of recurrence by 20 percent. That's not a huge amount, and there's just no way of knowing whether radiation would have changed anything for me. But you might want to talk this over with your doctors. I will be getting radiation this time (and my prognosis is excellent, btw! Mine is just one (very unlucky) experience and one opinion, but I hope it can help in some way.

Dx 11/1/2009, 1cm, Stage I, 0/9 nodes, ER-/PR+, HER2+ Dx 9/2019, IDC, Left, 1cm, ER-, HER2+ Chemotherapy Taxol (paclitaxel)
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Oct 17, 2019 05:29PM - edited Oct 18, 2019 07:22AM by Margun

SamRans- did you opted for rads or not? I went with my docs suggestions and I am. Not doing rads but some posts here make me worried that skipping rads increase recurrence even though I did bmx and no lymph nodes were involve

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Oct 17, 2019 05:31PM - edited Oct 17, 2019 05:31PM by Margun

SamRans- did you opted for rads or not? I went with my docs suggestions and I am. It doing rads but some posts here make me worried that skipping rads increase recurrence even though I did bmx and no lymph nodes were involved. I hope we all do the right thing.

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Oct 18, 2019 06:26AM SamRuns wrote:

Hi Margun, I decided not to do it. I spoke with my surgical oncologist and she said there was nothing to indicate that I would need to do it and if it did come back, I could elect to do rads then. My MO agreed as well (even though she was the one who referred me!). She said I could do Neratinib after my HP infusions are done to further reduce the risk of recurrence. My mother did rads when she had breast cancer and 20 years later, she is still suffering from side effects so I'm biased against doing it. I know that it has improved since then, but I felt like the radiation doc was bullying me into it - almost like she needed to meet her quota of rads patients for the month.

I love to run! Last marathon 12/9/2018 - with undiagnosed BC Dx 1/14/2019, Left, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2+ Chemotherapy 2/4/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 2/4/2019 Herceptin (trastuzumab) Targeted Therapy 2/4/2019 Perjeta (pertuzumab) Surgery 6/26/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 23, 2019 07:08AM Kimm992 wrote:

I had a mastectomy and both my MO and RO agreed that radiation would reduce my chances of recurrence. Also because I was only 35 at diagnosis we all agreed that it was best to just "throw the book at it". It's possible I was over treated but I didn't have any nasty or long lasting side effects from the rads and my mind is at ease knowing that I did absolutely everything I could to treat it.

Dx 10/14/2015, IDC, Right, 1cm, Grade 3, 0/3 nodes, ER-/PR-, HER2+ Chemotherapy 11/2/2015 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Targeted Therapy 1/6/2016 Herceptin (trastuzumab) Chemotherapy 1/7/2016 Taxotere (docetaxel) Surgery 3/24/2016 Mastectomy: Right Radiation Therapy 4/30/2016 Lymph nodes, Chest wall
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Oct 23, 2019 09:16AM DogMomRunner wrote:

I had rads but with just a lumpectomy it was pretty much a given. My RO said during the consultation that he felt that even those who undergo mastectomy can benefit from radiation. Especially those who get nipple sparing or if any tissue is left behind.

As far as rad SE - everyone is different but I got 16 whole breast and 4 boosts with minimal SE.

You ain't run far enough to say My legs have failed You ain't gone far enough You ain't worked hard enough You ain't run far enough to say It ain't gonna get any better. Nathaniel Rateliff Dx 4/24/2019, DCIS/IDC, Left, 1cm, Stage IA, Grade 3, 0/8 nodes, ER-/PR-, HER2+ (FISH) Surgery 5/17/2019 Lumpectomy: Left; Lymph node removal: Left, Sentinel Targeted Therapy 6/6/2019 Herceptin (trastuzumab) Chemotherapy 6/6/2019 Taxol (paclitaxel) Radiation Therapy 9/22/2019 Whole-breast: Breast

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