i have more delays...is it bad or i am overreacting
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Yes but one and done to a specific site doesn't equal life time radiation. It's for that area, not the whole body.
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thank you, guys, for your input.
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Salamandra: My RO also said the same thing; I also specifically asked him the question.
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Hello and thank you for being here for me.
I was thinking during this weekend, and decided that I would like the second opinion and different RO.
And also why I am just seeing doctors there who are chosen for me ...why I can not choose myself who to see.
I like to be in control especially if i am told : make your own decision. So I wrote to my surgeon that I would like the second opinion from RO ...I am not happy with the doctor who says: i know nothing about it. And gives me risk % ...i correct him...and he agrees with my numbers. Why i went to see him in the first place????
Also and please let me know your opinion, guys, this RO said i can wait for 3 months before starting rads. And my daughter sent me a research link ...when it is recommended not to wait more than 8 weeks after surgery. What is correct then: 8 weeks or 3 months.
I was able now to make an appointment with RO which my surgeon recommended on 2/20. I hope after that visit I will be making a decision regarding rads asap....I don't want to wait 3 months.
Also i went over MOs in MSK and picked the one i liked (according to reviews) and I am going to see her on 2/28. It was not a problem to change an appointment because I did not see the one they picked up for me yet. I have learned that it is difficult to change after you already saw a doctor there.
I don't know if I am taking all correct steps...but I feel accomplished today.
Please comment. thank you
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Good for you Marinochka - we have to be in charge of something on this damn sleigh ride. Hope you like the MSK doc you picked.
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Good luck marin, we'll be interested to see how you make out with this appt.
Just to clarify from my previous post, I should have written, "lifetime dose to a specific site"
I was clearly told that my left breast cannot be radiated again in my lifetime.
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marinochka, hopefully getting another opinion from another RO will be helpful. Is this second RO also at MSK? If so, then it's likely he or she will also use the same MSK nomogram to make their assessment and recommendation. In that case, this might not address whether the nomogram would be accurate given the smaller than average size of your area of DCIS and your larger than average surgical margins (thanks to the re-excision), or whether the nomogram might be over-stating your recurrence risk because of these factors. But if the RO is at a different hospital, then you might get a different recurrence risk assessment. The other thing to keep in mind is that an RO's job is to all about radiation, so ROs are probably inclined to recommend radiation even when the benefit is small and the need is questionable. I think it's interesting - and commendable - that your first RO said that you do not need both radiation and hormone therapy and recommends that you choose one of those treatments rather than have both.
To your comment about the risk numbers, I've looked at what you've written a few times and I must be missing something because I'm not seeing the confusion in the numbers between you and the RO. If there is any confusion, I think it relates only to a misunderstanding of what each number represents. That can easily happen during an appointment with a doctor when the numbers are flying. Here's what you said in your earlier post:
"With radiation next 12 years recurrence risk, he said, 2-3%. Without radiation : 12%. But i already looked up their nomogram, and if i do nothing it is 12%.
If i do hormonal therapy and no radiation it is 5% -5 years, and 7%-10 years. I said it to him, and he agreed with information WHICH I TOLD HIM.
So how come you are saying to me 12%...It is frustrating"
Here's my interpretation:
- Recurrence risk at 12 years if you do nothing: 12% This is consistent with the MSK nomogram, and seems to be what both you and the RO are saying.
- Recurrence risk at 12 years if you do both radiation and hormone therapy: 2% - 3% This makes perfect sense if the recurrence risk prior to rads and HT is 12%.
- Recurrence risk at 10 years if you do hormone therapy only: 7% This would extrapolate to approx. 8% recurrence risk at 12 years, which makes perfect sense if the starting risk at 12 years, without rads or HT is 12%.
So by my interpretation, all the numbers seem to hold together. The confusion might be if the RO said that your recurrence risk would be 12% risk without rads but with HT. I suspect that's not what he said (or meant) because there is no way that rads alone would take risk down from 12% to 2-3%. Additionally, the RO would be using the MSK nomogram as a guide and the numbers as I've interpreted what he said (based on what you wrote) are consistent with the nomogram, give or take 1 percent.
Good luck with the appointment with the second RO on the 20th. I hope you get the clarity that you are looking for.
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Thank you Beesie for your reply.
The RO is in different hospital but was recommended by my surgeon at MSK. I only mentioned to the surgeon about RO saying that he does not know anything about UV sensitivity issue.
My mistrust comes from the fact that RO did not say anything about "do nothing" when he brought up %. He just said from the start: with rads 2-3%, without rads: 12%.
He did not even mention word "nomogram", just said there were studies and this is my % of risks according to those studies.
it is me who brought up nomogram and what i found out there...he agreed. Imagine if i came in without looking it up and just was relying on information he is giving me. And he only said 2-3 or 12. I started talking about a HT myself ..It seems to me that he assumed i don't want to take a "pill"(his expression).
It could be all misunderstanding but he did not try to explain things clearly to me, i was again pulling information from him. I feel like i was kind of giving him some answers, and in order for me to trust, I would like to be given answers by the doctor instead.
Well, anyway I will be able to compare now:)
I am regretting that I did not even discuss that i have wide margin now...i don't think he noticed that even. He said "clear margins" and small DCIS. You are correct, as of now it is pretty big margin i have, i will mention it with another RO.
Beesie, also my understanding now that it is better to start radiation(if to start at all) not more than 8 weeks after the surgery(he said i have 3 even possible 6 months, but he prefers that i would make a decision sooner)?
And also I want to explain why I am considering radiation after thinking about it. I am thinking that if i would not do it, and start HT...and would not be able to stay on it(for whatever reason, some side effects which would not be tolerable) it would be too late for radiation...and I will be at risk of 12%. I am going to do HT...but we can not predict what will be happening(stories on this board scare me). This is my thinking, but this is why I am trying to talk to another RO and after that MO to come to some kind of decision and live with it.
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marinochka, I can't answer your question about the timing of rads. I don't know how much effect starting later would have, particularly in a situation where the risk is already quite low.
As for doing rads, the only thing that is important is that you do whatever feels right to you, whether that is nothing but surgery, just rads, just hormone therapy, or both. It's your decision. What's important is that you have the necessary and accurate information to make this decision.
To that end, I'm glad to hear that your second opinion RO is at a different hospital. Personally, I find it hard to believe that your recurrence risk could be as high as 12% with your pathology and surgical margins, but of course I could be wrong. The problem I have with the MSK nomogram is that the way it is set up, someone with your diagnosis and pathology, a very small single focus of grade 2 DCIS with very wide surgical margins upon re-excision, is calculated to have the exact same recurrence risk as someone of the same age who has an 8cm multi-focal grade 3 (without comedonecrosis) DCIS with 2mm surgical margins upon re-excision. That seems illogical and inconsistent with everything I've learned from reading up about DCIS and being on this site for years. So it will be interesting to see what risk level this other RO assesses for you.
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my update. I had a second opinion with RO in a different hospital. I was very impressed, a lot of attention, discussion, explanations. One of the choices : partial radiation for 5 days. I picked that one. Resent studies show that it leaves 1% higher risk than full breast. RO did not push me to make that choice or any other choice. But supported my choice after I have made it.
What they said ( and it was not clear for me before that visit ) that anti hormonal treatment and radiation serve different purposes. Anti hormonal treatment is more about new cancer in the same or other breast.
I could choose to do nothing as well ( no radiation) but it would still leave me at 10-12% risk for recurrence next 10 years.
Treatment is done in prone position to protect lungs and heart.
I hope my uva uvb sensitivity would not give me too much issues, but I will report on that.
Please comment. Thank you for letting me share my experience here and get support and advice.
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