Need 3rd opinion - Phoenix area RO? Grey Zone
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Hello -
I am in the "grey zone" as to whether or not I need radiation - and I'm finding it's a hard place to be. I obviously want to do everything I can to avoid recurrance, but I'm also scared to death of being irradiated...and the decision is going to be up to me. I've seen 2 Dr's who are both supposedly among the best in town. RO #1 told me, before I even had my surgery, that I definitely needed radiation because I fit the newest model - premenopausal with lymph node involvement. I felt like he wanted to sign me up on the spot, because he was selling radiation! RO #2 was candid and said it could go either way - when I asked her if she would do it if she were in my shoes, she told me that she honestly didn't know if she would do it or not. So, I take that as a maybe.
Had I been diagnosed a year earlier, before the new "guidelines" it would not have even been recommended for me. My surgeon got a 6mm margin on my 3cm tumor, and I had no extra nodal extension...but the new studies don't take any of that into consideration. I have some major concerns because my tumor was on the left side, and because I had ALND. I also have this very fair Irish skin that I really suspect won't hold up well to treatment (maybe I'm wrong, but I just have a bad feeling about it) The 2nd Dr mentioned that she would consider radiating under the arm only (because I'm worried about heart damage and because my margins were so good), but since then, I've spoken with someone else who's Dr told her that he wouldn't ever radiate under the arm after ALND due to lymphedema risk. Now I really don't know what to do.
So...is there anyone who can make some recommendations for a 3rd opinion? I'm in AZ and I'm willing to travel to find someone who is honest and won't make me feel like they just want my insurance $?
Thanks!!
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ewesty - I too was in the 'grey zone'. We have very similiar stats. I also had a BMX, cancer on left side, with 2 positive nodes. However I refused the ALND. With the exception of the two positive nodes, everything else about my pathology was as good as I could hope for. The cancer was not near my chest wall. So I went outside the standard of care and radiated only my axilla and superclavical.
I also sought different opinions/consultations. Everyone agreed I was in the 'grey zone' with radiation, and could go either way. I was OK with the idea of just zapping the axilla and superclavical since I refused the ALND, but was not comfortable with rads to the chest wall. I ended going to a radiation oncology center that works with various hospitals, cancer centers and medical oncologists Northern California, since they were willing to go outside the 'standard of care' since I didn't want the whole package.
Oh the one thing I learned, at least in Northern California, a lot of the oncologists (medical, surgical, and radiation), knew each other. If you are willing to come to California I know that UCLA, UCSF, and Stanford provide excellent consultations, and you can ask them if they have reduced rates if your insurance will not cover it.
Feel free to PM me if you want.
Good luck and go with your gut feeling when you make your decision. It is your body, your decision.
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Just wanted to add. Be sure to see a Physical Therapist who specializes in lymphedema as soon as possible, even if you have no symptoms, to get evaluated and to learn how best to rehabilitate your arms, both are at risk with a BMX. Ask for compression sleeves. If you decide to do radiation you can wear the compression sleezes while getting zapped and for a couple of hours after each radiation treatment. That was the recommendation of my PT and so far so good.
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I'm going crazy with this also. I'm in the "grey Zone". had BMX in Jaunuary, 6 weeks chemo. my dx is 1.6 cm. 1 node out of 16. Stage 2, grade 3, braca-. her2-, er+. Onc cent me to RO because of new guidelines, however thy are not set in stone. There are variables. That's what can drive you crazy. The RO set no to rads and also presented the case to her peers at conference who also said no to RADS. I feel the oposite and am now going to look for 2nd opinion. I am 52 had hysterectomy last year but kept ovaries and was still getting my period like clockwork up until surgery. RO feels risks out weight benifits since bc on left breast cancer. However. i have read several studies that rads have improved. Good luck. Let me know how you make out
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@ProudMom - thanks so much for sharing. It's funny but, what you're doing, declining radiation to the chest wall is EXACTLY what I asked my RO about the first time I saw her. It makes sense to me. I even discussed it with my breast surgeon...she thought it made sense too. I had 6mm margins and the tumor was nowhere near my chest wall. The RO told me, at the time that it's not something that they normally do, but she would consider it. I went to see her again yesterday, really thinking that I was not going to move forward with the rads, unless she had some additional information for me. She didn't...but she did change her mind about what she would do personally. She told me that she would do it for peace of mind. That really stressed me out and got me thinking again. I was so torn and stressed out at that I forgot to ask her again about the "unconventional" treatment and if she would still consider it. My breast surgeon, who I trust more than anyone in this whole process, also told me that at my age, she thinks that she would also do it. So...I guess I'll be making a phone call to the RO tomorrow to check into it.
How did you do through the treatment? Burns...etc? No lymphedema?
Now my other dillemma is reconstruction. I finished Chemo on 5/25. I know they like to start rads within 4-6 weeks. My original plan was to have my expanders swapped out for implants shortly after chemo, then start radiation after they healed. The PS's in the area all seem to be moving to the opinion that implants hold up better with rads than do the expanders. My issue is this...I had an infection in my left breast (cancer side) and the expander had to be removed about 3 weeks ago. He wasn't sure if he was going to be able to put it back in or not. If not, I was going to need a flap surgery. Well, now that I think I'm moving ahead with rads, an implant won't be an option anyway. I left a message for the PS yesterday asking what would be the plan for the right breast if I did decide to do rads. He said he would want to swap out the expander for an implant then it would be 4 weeks before I could start the rads. I'm wondering, if because the expander isn't on the cancer side, it he would consider waiting until I'm done. What's the worse that could happen? It doesn't hold up well and I need a flap on that side too? I'm not sure that I want one flap and one implant anyway. Ugh. I guess I'll talk to both the RO and the PS about that tomorrow too.
@dipad - I'm so sorry you're going through this too! I'm surprised that you actually found RO's who said you didn't need it, since you also had a postitive node. Are you premenapausal? Tha seems to be a major factor. Good luck with your decision. Keep me posted!
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Erin, have you been to The Mayo Clinc in Phoenix? They're NCI-designated (the best of the best), as is the UofA in Tucson. I would trust what either one tells you. Neither one will want to "sell" you RT if you don't need it. I had a lot of my tx @ UCLA (another NCI-designated center), and I can't say enough wonderful things about them. They wouldn't have any interest in selling you RT either, as it would be totally inconvenient since you're in AZ.
I was a lot like you (although I'm post menopausal) when I was told I should have RT after a left side mx & ALND. But in my case, the three rad oncs I saw all pointed to two very specific reasons why rads would be wise -- a lymph node with extracapsular extension, and a close, undesignated (uninked) margin. So I did rads, and I'm glad I did for the added peace of mind. And if you have it at a top notch place, I honestly think the heart & lung damage, as well as the potential for LE, aren't nearly as bad as you might fear.
I can also tell you that one of the gals who did rads at the same time I did had extremely fair skin, and she clued me into Emu Oil, which was the best ever at preventing skin damage.
Just some rambling thoughts, but if I was in your situation, I would definitely seek a 3rd and maybe even a 4th opinion. That's what I did, until eventually I realized the overall weight of opinion was to do it. Deanna
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