Topic: Post-mastectomy radiation after pathologic complete response ?

Forum: Radiation Therapy - Before, During, and After — What to expect from treatment and ways to cope with side effects.

Posted on: Nov 14, 2022 11:24AM - edited Nov 14, 2022 05:01PM by sarahnh

Posted on: Nov 14, 2022 11:24AM - edited Nov 14, 2022 05:01PM by sarahnh

sarahnh wrote:

Hi everyone - I'm trying to choose whether to have PMRT. I am in a grey area. I was node positive (probably 2 nodes), but had complete pathological response to chemo. Surgery found no cancer in breast or nodes. No one knows whether PMRT helps or harms patients like me.

The guidelines go back and forth, but PMRT is the default for now. There is a big randomized study which hasn't reported yet. I've seen two radiation oncologists who gave a "weak" recommendation for PMRT, and say it wouldn't be crazy to omit it.

Has anyone here found themself in a similar dilemma? If so, what was your thought process and choice?

Please give me your thoughts, anyone who can! Any dialog will help. I am really at a standstill in this decision!

Sarah




(Putting this info here until the website is fixed) *** DIAGNOSIS:*** Mixed IDC and ILC (with DCIS and LCIS). Right breast (between 2.5 and 4.5 cm). Right axillary lymph nodes (at least 2). *** PATHOLOGY:*** ER negative (0%), PR negative (0%). HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3. *** TREATMENT:*** TCHP (Taxotere, Carboplatin, Phesgo, with Neulasta Onpro) 6 cycles. Lumpectomy (pathologic complete response) and targeted SLNB (0/7 nodes) *** HOSPITALS:*** Dana Farber Cancer Institute. Massachusetts General Hospital.
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Nov 24, 2022 02:13PM ratherbesailing wrote:

Sarah -

Ahead of time, they didn't really discuss lung dose, only expected cardiac dose. I happened to talk to the resident ahead of time and found the cardiac dose had gone up from the 2.5 Gys the RO told me he could limit it to, and it was now 6.5 Gys. The resident I spoke with thought that was fine. I didn't and emailed the RO, and the RO brought it back down.

The fact of the matter is there are guidelines, and they will follow them. But they can't really tell what the dose is until after they've done the planning. And they adjust the plan as needed.

The only way to know the actual dose given is a planning document called the dose volume histogram. But no patient should have to get into all the dosage issues - it's very complicated and not what we do. I think the best bet is to find a RO you trust, and who you feel is taking your concerns into account. I think (and dearly hope) my experience was out of the norm. If you find someone you're comfortable with you should be fine!

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Nov 24, 2022 02:48PM ratherbesailing wrote:

Sarah -

Ahead of time, they didn't really discuss lung dose, only expected cardiac dose. I happened to talk to the resident ahead of time and found the cardiac dose had gone up from the 2.5 Gys the RO told me he could limit it to, and it was now 6.5 Gys. The resident I spoke with thought that was fine. I didn't and emailed the RO, and the RO brought it back down.

The fact of the matter is there are guidelines, and they will follow them. But because everyone's anatomy is different, they can't really tell what the dose is until after they've done the planning. And then they can adjust the plan as needed.

The only way to know the actual dose given is a planning document called the dose volume histogram. But no patient should have to get into all the dosage issues - it's very complicated and not what we do. I think the best bet is to find a RO you trust, and who you feel is taking your concerns into account. I think (and dearly hope) my experience was out of the norm. If you find someone you're comfortable with you should be fine!

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Nov 29, 2022 05:05PM sarahnh wrote:

Oof, 6.5 Gy does seem too high for heart! From what I've read, even IMN should keep heart dose down near 2 Gy. But lung dosage is unavoidably high (I'm reading 16 Gy on average). Radiation dosages seem like such a crapshoot. I totally agree that patients shouldn't have to get involved with the technical details, but suspect most hospitals are too busy to do a thorough job of optimizing plans for everyone.

I've checked the "official guidelines" (NCI, NCCN, ASCO) and they all require PMRT to include IMN...but that's a new thing and I wouldn't be surprised if it gets reversed. It sounds like many RO's omit IMN unless there is a good reason. Then again, some RO's feel most of the benefit of PMRT comes from doing the IMN! Who knows for sure!

It's a tough choice -- I've found a few older threads with the same debate. I hate having to be my own expert on this. Chemo choices were so much easier...

(Putting this info here until the website is fixed) *** DIAGNOSIS:*** Mixed IDC and ILC (with DCIS and LCIS). Right breast (between 2.5 and 4.5 cm). Right axillary lymph nodes (at least 2). *** PATHOLOGY:*** ER negative (0%), PR negative (0%). HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3. *** TREATMENT:*** TCHP (Taxotere, Carboplatin, Phesgo, with Neulasta Onpro) 6 cycles. Lumpectomy (pathologic complete response) and targeted SLNB (0/7 nodes) *** HOSPITALS:*** Dana Farber Cancer Institute. Massachusetts General Hospital.
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17 hours ago lw422 wrote:

All of the "being our own advocate" can be exhausting. I have IBC and even though I had a pCR with chemo, a total ALND with NO involved nodes of 32 removed, I still had to have a full course of 33 rads including 5 boosts as part of the Standard of Care. I am a patient at MD Anderson and felt confident that my team knows best... most of the time. I conferred with the RO before rads and saw the computer-generated pictures of my chest and axilla where the different levels of radiation would be applied.

That was all well and good, but when it came to the actual treatments, with the Sharpie colored markers all over my chest and armpit, I never felt that the beam was very precise. I mentioned this to my RO and was poo-poohed but it was concerning to me. I wanted that PRECISION that was shown in the computer mapping image, not that willy-nilly drawing on my skin. When it's you laying on that cold table in the "mold" they make for your body, "take a breath and hold" makes you wonder every time whether that breath was deeper than the other 50 times and exactly what is that beam hitting.

Sorry I have added nothing of value here, but it is a concern that all of us face. Is the treatment going to cause more problems? I know for a fact that I had no lymphedema until after radiation. How can we know what's best for ourselves.

Dx IBC, ER-/PR+, HER2-

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