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Old 05-05-2014, 12:31 PM   #1
bwAK
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Radiation after pCR - what to do!?

Hello ladies,

Iím your classic forum lurker, but lately my wife and I find ourselves in the midst of making a big decision and I was seeing if anyone has had any relatable experiences or decisions to make. Weíre triple positive and most likely stage IIish IDC (T2N1M0 -- hard to know what our final stage would have been because we got a pCR). She started neoadjuvant chemotherapy (TCHP) in December and had her BMX a week and a half ago. As I said, we received a pCR -- no sign of residual disease, the one lymph node we knew was positive before chemo had scarring (they call it the therapy effect). They were able to take out a total of six sentinel lymph nodes with only the one showing scarring Ė so we can be confident it didnít spread much further. Furthermore, my wifeís reaction to her chemo cocktail was superb, with the tumor melting before our touch within days of the first infusion and being undetectable by the second.

So, everything has been textbook to this point, but now the question of radiation has us reeling. We fall into a gray area of knowing whether or not it is needed in our case. Being Her2+ with aggressive cancer and one positive node, we know we would be getting it had there been any residual disease after surgery. But with a pCR and such a good reaction to chemotherapy, is it necessary now? This choice is made much harder because we are quite young (by BC standards). My wife and I are 26, thus we have a longer time to develop a secondary carcinoma. In addition, younger survivors' risk is just generally higher after radiation (did you know child cancers survivors have a 25% increase in developing a cancer like BC throughout their lives?). Our chance of getting a secondary cancer is not that high (maybe 2-4%), but itís stupid to think about -- would a future recurrence of BC be easier to treat than a secondary cancer like lymphoma, myeloma, or lung cancer?

So there it is. We had early but aggressive breast cancer and now a pCR Ė so what to do about radiation? Our breast surgeon and RO are both leaning towards no Ė but our RO called the head RO at MD Anderson (a colleague from med school) for a second opinion and he was adamant on radiation based on our age and that we should throw everything we can at it. Blaaagggh.

Iím definitely not looking to the community for a definitive answer, but has anyone had to make or think about this decision? How and why did you come up with your answer? I always appreciated the ladies on this forum and the information and comfort youíve provided me even though I havenít been a member. Thanks for your consideration.
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Old 05-05-2014, 12:42 PM   #2
tricia keegan
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Re: Radiation after pCR - what to do!?

Hi,

Glad to know your wife's response has been so good, this disease is all about making tough decisions and I was glad in my case that I didn't have a choice as I had had a lumpectomy.

I can't help you much with your decison except to wish you both well, but looking back now nine years on I really am so pleased I completed chemo and rads and thankful to be still cancer free. I chose to throw everything I could at this and think in your wife's place I would still do the same, who knows what may help us avoid a recurrance?? for all we know its the one thing we thought we wouldn't need, thats my view on it anyway!
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 05-05-2014, 05:55 PM   #3
LeahM
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Re: Radiation after pCR - what to do!?

Wow. And I thought I was "young" at age 39. Congrats to you both on getting thru this far.

I was Stage II IDC with one pos node also. I had b/l mastectomy followed by TCH followed by rads. I didn't want rads. I got a 2nd opinion. I hemmed and hawed and hated the thought of it. But I did it. It was recommended based on my "young age" and the fact that the one pos node was the only node removed (see signature) and I refused a nodal dissection.

Ultimately I asked myself this question "if I don't do rads, and my cancer comes back elsewhere, will I blame myself for it because I didn't do rads?" My answer to that was "yes" and so I did it. Under duress. Bitching about it the whole time.

But truth be told, it was easy compared to everything else. I am sure your wife has HAD IT with being poked and prodded and is desperate for a return to normal. I was too. The right creams and the right amount of rest made it easier.

Do I worry about new cancers because of rads? Not really. Do I have lingering effects from rads? I believe so. That combined with TCH has damaged my lungs, at least, I think it has and I'm sticking to that theory.

But....I am glad I had rads.

This is a personal decision, one that can't be made lightly and I wish you all the best in making it. Keep us informed.

Best
Leah
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39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
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Old 05-05-2014, 07:58 PM   #4
sassy
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Re: Radiation after pCR - what to do!?

For myself, I have chosen the path of most aggressive treatment. Rads were not optional in my case, but if I were in your situation, I would still choose rads.

Playing Devil's advocate, If you choose not to do rads, will you always second guess the decision?

So happy for your good response, and wishing you leave throughout your decision making.
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dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14YEARS NED!
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Old 05-05-2014, 08:02 PM   #5
roz123
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Re: Radiation after pCR - what to do!?

I was in the dreaded grey area

I also had a pcr after chemo -here's the kicker, I had no positive nodes on imaging before chemo started, my tumor was 2.2ish cm
the reason I was told I needed rads:
grade 3
LVI
young age (42)
I also had the scarring note on my post surgical pathology which makes me think I did have a positive sentinel node
I did rads because I only had 2 nodes removed and I was worried about that plus my RO strongly recommended based on the 3 factors above
I think ultimately I was over-treated but I made the best decisions I could at the time

I asked my RO and he said the pathology and treatment prior to starting chemo is how they make their recommendations. I believe they are studying how pCR affects things like radiation bu I haven't seen any results - maybe ask if there are any studies out
rads has its own SE and your concerns are very very valid
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
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