No rads needed after PCR, Neg nodes, BMX?!?

LillieRose

I'm not even sure I'm posting in the right place but I'm freaking out and need advice! I'm 30 years old had tnbc. I did chemo for 4 months and just had a BMX. I was lucky and had a complete response to chemo, node negative, clear margins, no lymph vascular present! Great path report! I was so happy. Then I meet with my RO and she tells me no rads now. She said the harm outweighs benefit but from what I've read That seems wrong... She took it to the Dana-Farber tumor board and they all agree no rads. I plan to get a second opinion but is this normal? Do most people not get rads with this kind of response? I should also note my tumor was 2.1cm, so small. Thank you!

Alibeths

my first time around I was the same as you. Except 35. My tumor was 1.6. I didn't do rads. I had a Recurrance in ONE node. I have read they r doing rads on tn patients. Especially young ones. Good luck with you decision.

LillieRose

thanks Alibeth! Did you have a Pcr also? I've read a lot and most people with a Pcr after chemo don't recieve rads. I'm getting a second opinion thought! Hope your treatment is going well!

Stephmoen

I have surgery scheduled sept 21 I had neoadjuvant chemo my pet is currently clean and had an ultrasound done where there was no more indication of the bReast cancer during surgery I will have an SNB done if there was any cancer in my lymphs dead or not my oncologist said I will have radiation if there was no indication of it spreading to me lymphs at all I will not she says there's a point where the risks outweigh the benefits but I am going to request a consult with a ro for sure

LillieRose

thanks Steph! Yes, that sounds right in line with most docs thinking. I was told I would have rads and possibly more chemo after surgery because I am triple neg and they didn't expect a complete response to my first treatments. Then I surprised everyone and had a Pcr, no evidence of cancer in breast or nodes. The cancer never touched my nodes so now they are saying no rads. It's tough for me because it means my treatment is over but also relieving at the same time. I plan to get anothe opinion for peace of mind but I am at Dana-Farber and they've seen woman like me a million times... They know what's best. Good luck with surgery

Stephmoen

thanks Lillie! I also have seen this article which suggests that aggressive tumors such as ours could benefit from radiation even with negative lymoh nodes it's worth bringing up to your radiation oncologist especially since there is no more treatment for triple neg bReast cancer you wanna go aggressive

http://www.eortc.org/news/irradiation-of-regional-...

Stephmoen

http://www.nejm.org/doi/full/10.1056/NEJMoa1415340...

This one shows it improves disease free survival

rozem

I had negative nodes (on imaging) and was recommended rads due to the following:

1. young (42) 2. aggressive pathology (her2 and grade 3) 3. LVI 4. Tumor just over 2 cm

I also had pcr after chemo...yes I often think rads was overkill in my case. At the time I was just scared sh**tless and just wanted to do everything not sure I would make the same decision now that I have some clarity but Im at peace with it

rozem

also wanted to note that another deciding factor was that my pathology after chemo said the 2 nodes tested had (and I don't remember the term now) but something suggesting that there was cancer and it was killed with chemo

LillieRose

thank you all! If I had had cancer in the nodes and had a Pcr they would have done rads and if I had a lumpectomy they would have done them also...

It's hard to make these choices! We just want to live and we have to trust which is so hard... I'm hoping a second opinion gives me piece of mind.

TNBCat37

Lillie,

Oh, I am in a similar diagnosis like you, but contrary to you, my radiologist wants to give me radiation, however I'm reluctant to do so.

I had 2.8 cm Triple Negative Cancer tumor, grade 3. Unfortunately, 5 months chemo didn't kill all my cancer cells. I didn't get pCR. There's 5 x 5 mm residual tumor burden at the time of surgery. The surgeon did the double mastectomy for me said I don't need radiation. My closest margin is to the chest wall. The margin is 8mm. Clear. Also luckily, I don't have LVI lymphovascular invasion), a term means the cancer cells haven't spread to my blood vessels and/or lymphatics yet. Usually if you have LVI, the radiation will be given.

However, my radiologist argue to give me radiation because: 1. I'm young (38) 2. The tumor was abut chest wall, although the margin is very clear, there's chance that the cancer comes back to my chest wall 3. There's also 1.2 cm DCIS in the breast, which is close to the 2.8 IDC tumor, altogether they encompass 4 cm (actually altogether they are 5cm before I had chemo, chemo shrank the DCIS too). 4. the radiologist saw my skin got thickened and red when I first came to see him, but I could argue it's because of the biopsy. I'm allergic to adhesives. The stereo strips made my skin itchy, red and had blisters.

I'm reluctant to get radiation because of the reconstruction plan will be totally changed if I have radiation. The skin will be burned. My Plastic Surgeon already said he does not do any implant based reconstruction after radiation because the failure rate is so high. There're only 2 choices for me left: 1. get DIEP flap from my abd to transfer the fat tissue to my breast. But I'm skinny, I don't have much fat at my stomach. Plus, I saw people show their DIEP scars on youtube, it's horrible! The long and ugly scar is from hip to hip. 2. I get a robot operated surgery that they harvest my muscle from my back to fill into my breast, plus they put a small implant in. The scar is smaller than the DIEP flap. But my back muscle won't grow back. I'm afraid that I won't be able to play tennis, badminton, golf, etc... all the things I enjoy before.

I only left with 2 weeks to decide whether to do radiation or not.

If I were you, had a pCR, clear margin, and didn't have LVI in the pathology report. I wouldn't do radiation. Radiation only prevents local recurrence. After a clear mastectomy and pCR, the cancer coming back locally is very low.

Kristi

LillieRose

hey Kristi,

I'm not sure if you made your decision yet but I wanted to let you know that I won't be getting rads. The tumor board at Dana-Farber and MGH told me it would not benefit someone with no nodes and a BMX. The Pcr is great but even without it I would not have rads. Being a TN and only 30 years old I'm having a hard time leaving something "on the table" but I've done my own research and have the opinions of two pretty good hospitals... I have to trust it right.

Get another opinion by a top hospital and trust what they tell you. The head of breast oncology at MGH also told me that a lot of small practices push extra treatment... Just make sure your somewhere that deals with young woman!

Good luck!

Jadanovic

oh man- what a dilemma! Although this is an old post, I thought I would chime in with my unique experience. I had a 8cm tumor in my right breast - and lymph node- high grade ER PR negative HER2 positive stage 3 . 4 rounds AC 4 rounds Taxol plus herceptin.

Had a double mastectomy as I learned that I have a genetic condition known as li fraumeni syndrome- which is essentially a predisposition to cancer due to a malfunctioning tumor surrpressor gene. With this condition one had a higher risk of developing cancer ( includes radiation induced). I was blessed with a PCR! I felt like I won the lottery- I was certain that this would expect me from needing rads. My RO is a thorough guy and took my emetic condition into consideration before assessing what/of radiation was needed. After consulting with 4 other RO's and a genetic onc- he told me that 3 of 4 docs still recommended the rads. This was due to my tumor size, grade, age.... I was bummed and scared to go through the rads but I really believe in treating the known threat. Whatever happens in the future- I want to go to bed knowing that I did everything to fight this bloody BC. At the end of the day, YOU need to make a decision that you feel most comfortable w