1 Positive Node, Mastectomy...did you do Rads?

Colt45

Let me just say that all of you ladies trying to help me are beyond compare as human beings. I am just at a loss with my inability to help her. I appreciate you all.

wildrumara

@VLNRPH - You hit the nail on the head.   As breast cancer patients, we have to "make the best decision with the information we have and then try not to re-visit the scene too often".......LOVE IT!     At some point, you have to trust your team of doctors, the ones who are "vested" in your care and move on! 

@Colt 45 - You and your wife are in the "thick" of the battle right now, which is a very scary place to be, but TRUST that you will make the best decision once you talk to an RO, or two.  Pray for clarity and wisdom.  It will come.....and then....like VLNRPH said "move on". 

ALittleBitBritish

No rads or chemo for me with one positive node 1.4cm ...oncotype score low...ALND and tamoxifen after BMX

Colt45

@wildrumara: Yes. Make your best decision and live. I just want all the info and perspective I can get to help make that decision.



@VLNRPH & Alittlebit: Thanks for pitching in.

LizR

I was diagnosed 8+ years ago, had a similar diagnosis as your wife, had a right single mastectomy and struggled with the radiation decision.  In the end I probably had at least 3 consults (all with different opinions), was basically told that either way it would be fine (it was not a life or dealth decision) and I decided to move forward with the radiation.  Local hospital biopsy showed 1 positive lymph node (sentinal - lots of cancer); MSK second opinion showed a 2nd positive lymph node (very little cancer).  I did have that extracapsular issue because of the amount of cancer in the node - and because of that, my age (young 41), and that I had a large primary tumor (4+ cm) with small margins, the last doctor recommended radiation (the primary reason that I remember was the difficulty in treating locally advanced cancer if it did come back on my chest). However, I also remember being told that if the breast cancer had been in my left breast, radiation would NOT have been recommended due to the toxicity to the heart (not worth the risk of the small benefit I would be getting). I remember getting really zapped - my chest wall; my axila; my neck (staying 1 step ahead of the cancer) and my back armpit.  I recovered very well (olive complection) - really no complications whatsoever, other than tiring easily.  However, radiation does greatly complicate breast reconstruction choices (especially if your wife is thin with no belly fat).  I ended up having to travel out of state for a SGAP (glute donor site) but did get beautiful results (must have a real pro as the surgeon). My recommendation is to find a radiation oncologist that you really trust and see what they say.  I have never gone wrong listening to the doctors that I trust - they really do have our best interests at heart.  I wish you much luck in your journey.  Liz

Colt45

@LizR:



Thanks. Bless you for coming back to see all of us with your success story.

momof3boys

My TE's have a metal port. I have two cards that I keep with me when traveling. I finished rads last may, 2012. I will have my exchange this june, 2013. That's an unusually long time. My ps waits a minimum of six months from the end of rads to the exchange surgery, but, I got messed up with needing a Prophalactic hysterectomy, that's the reason for the long delay.

Colt45

We have an appointment Monday with an RO. I'm nervous.

vlnrph

You may want to ask if you can record the consult/discussion. It sure is difficult to recall all the fine points that may come up. I almost got my doctor "in trouble" with the plastic surgeon by misstating what I thought I heard! 

kianich

Hi Colt,

I was first diagnosed in 10/12 with BC on right side with 1 positive node. I had chemo (dense dose) until 2/13. The day of my surgery 3/21/13 I went to nuclear medicine for have a sentinel node diagnosis. The chemo took care of the cancer in the node so there was no reason to take any out. I still opted to have a BMX to keep the percentage low for recurrence and opted for reconstruction with TE. My surgeon and oncologist said because of the size of my tumor (8 cm) and my lymph node WAS positive I should have rads.  I have an appt. with my RO next week. I have been trying to find pros and cons myself to this dilemma. Please post your experience as I too am nervous. I will keep you and your wife close in thought and prayer.

wildrumara

@Kianch - Just looking at your signature line, with a tumor of that size, you being triple negative, and grade 3, those are all prognostic indicators for radiation, not just that one positive node.  All the best to you!  

Alicethecat

Hello Colt45

When an oncologist gave me my results, he said that in his opinion the most important thing about the DCIS and IDC was the grade.

Mine was a grade 3 - fast growing - HER2+ tumour close to the chest wall. These factors made him strongly suggest rads.

You might find a report in The Lancet, giving facts and stats about the risks of recurrence, interesting.

The interpretation at the end of the study observes: 'After breast-conserving surgery, radiotherapy to the conserved breast halves the rate at which the disease recurs and reduces the breast cancer death rate by about a sixth. These proportional benefits vary little between different groups of women'. 

http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)61629-2/abstract

 

I had a mastectomy but was still pleased to have rads as well. My friend, Horsygirl, had similar stats to me but is triple positive but had rads as well and is doing well - no recurrence or mets - seven years on.

 

Hope this all helps with the decision.

 

Best wishes

 

Alice

Colt45

We had our 1st RO consult today. I have to say I was fairly impressed. The RO came off as case specific/ client centered and very prepared with our case for the consult. We sat down at 11:30am with her and between discussion, examination, then another post exam discussion, it was over 2 hours of our time, face to face.



The RO mentioned the grey area we are in and said it was reasonable for us to go either way and really labored to give a recommendation either way. She said a broad range for risk without rads would be 5-15%, but that we would be in the very favorable end of that range. She said rads to the chest wall and supraclavicular (sp?) area would reduce our risk by 2/3. She would not radiate the axilla with the 21 nodes removed with good margins... IF she radiated.



I asked her what would SHE do if it were her. She struggled, but said all things considered, she would lean NO rads. A peer agreed with her.



She said there was no wrong answer in our case and encouraged a 2nd opinion. It's really a matter of how small we want to whittle that recurrence risk % while risking other things.



We have some thinking to do.

wildrumara

Glad to hear your first consult went well and that its behind you!    Let us know if/when you get another consult and what he/she recommends.  I think its safe to say that another RO will give you the same recommendation.  Your wife has nothing "glaring" besides that one node! 

Colt45

@wildrumara:

Thanks. The RO said she was glad we came and said that our case was 'worthy of discussion' with the positive node.



She said that my wife's age (more time to recur) and the tumor burden being higher than just the primary tumor are things to consider. Ultimately, she said we were "on the best end of the spectrum for no radiation" and her and a colleague both lean towards no rads.



My wife is vexed by the burden of such a decision. I think at this point, she is thinking she needs a compelling case be made FOR rads or she won't do them. We are seeking out another opinion. And letting everything sink in.



We would need to start doing rads in 5-6 weeks and we'd have to go in for mapping and what not 1 week before that. I know that my wife is "ready" to be done with treatment, she's weary emotionally. She wants to move on. But she also knows that this is her best opportunity to take care of this. She's now saying that she's not worried about the implants (I.e., she's ok not having them in case they fail with rads) so that won't affect her decision (I hope I've helped make her feel secure enough that she doesn't 't need them for me). I think she wants to be done... and she's looking at the long term risks of rads as a reason to be done, even if those risks are small. An agonizing decision for my wife. The RO was clearly agonizing over it yesterday.

fd1

Hi Colt - I had rads with the tissue expander.  It will be six months before I can have my exchange.  The option that MD Anderson and a lot of the other big hospitals are using is performing the exchange before the radiation.  This timing didn't work for me, but it is ideal.  For me, I had my surgery at the end of December, fills during January and February and started radiation mid-February.  I had a bit of skin blistering when I finished three weeks ago but it has almost completely healed.

My plastic surgeon said it can complicate things but generally the outcomes he has seen are good.  He also told me he was glad I chose to do the radiation as he believes it's an important part of the adjuvant treatment.  This seems to be a Canadian thing, or at least very specific to my hospital.  My RO told me that for him, with very few exceptions, if you have even one positive node, radiation is recommended.  From the other patients that I spoke to, this seems to be the general opinion of our tumor board too.  I can tell you that two young women that I know (30-40 year olds), one with stage IIB and a close margin after mastectomy and one with stage IIIA both declined the radation.  They were definitely on the very edge of the gray zone.

As for the tissue expanders, I believe there are some that have a metal port, but I'm not sure if they are even used any more?  I have an Allergan 133MV.

Best of luck making your decision!

Colt45

@rc1:

We're trying to get another opinion and then go talk with the PS about it all. I think my wife does have metal ports---but the RO told us it didn't matter. I dunno. I'm hoping we're fine either way. I think right now, it's a matter of my wife making a decision she can move on from and live with.



I admit I was a little surprised that the RO leaned towards no rads.



I'm not disappointed. Just a little surprised. My wife asked me what I thought and I said that I honestly don't know. I've had some clear opinions of some other things but not here. You're sacrificing some benefit of radiation for avoiding risk elsewhere. I wish we had a crystal ball.



I wish studies that looked at recurrence and stratified the subjects by # of nodes involved had longer follow up than 10 years and larger sample sizes.



There seems to be examples of ladies doing rads post BMX and not doing them. Some chose between ALND and rads/ some had both. Some even had ALND and radiated the axilla. Some radiated with no nodes. Some didn't with 3 nodes. There seems to be no consensus. That's why I was glad the RO really looked at OUR case's particulars----after making broader statements about people with 1-3 nodes as a clunkier group and even folks with a greater # of nodes involved.



There was never any "oh my God, you have to do rads". There was no strong feeling by the RO. Just a slight leaning towards "no". Her colleague agreed. More pressure on us. That's something most of us lament about this whole process.

mammalou

I had a metal port and it did not matter for RADs. You can't have any MRIs while it is in though.

Colt45

Thanks, mammalou.

Colt45

I wanted to thank vlnrph, momof3boys and Alicethecat for chiming in and helping.



Bless you all.



I am still welcoming more input, as we have not made a decision yet and others could benefit from your experiences & perspective.

Colt45

Thank you, kianich, for your prayers. We are praying for you, too.



Have you had your RO appointment, what did they say and have you decided on anything?



Bless you.

ahdjdbcjdjdbkf

I had micromets in one node and did the rads. My radiation oncologist from Lynn Cancer Institute sent my case out for a second opinion at Dana Farber and they agreed. I had a 4.5 cm tumor - 30% of which was IBC, the rest was DCIS. Also because I'm HER2+, both my Oncs say I should do pretty much anything I can.

Rocket

Colt, I had multicentric breast cancer both IDC and ILC, three tumors in three different quadrants. The largest tumor was 3.9 cm. I had a bi-lateral mastectomy with no recon. It was recommended that I have rads even though I had no nodal involvement because I had an acceptable, but close margin of 2mm. I don't regret my decision to do rads. I wanted to know that I had done everything possible to kill this beast while I had the opportunity. I hope all the best for your wife. I do know the agony of decision making.

Colt45

Thanks Mariasnow and Rocket.

Colt45

Bump

Morwenna

Hello,



I had one positive node, and had a mastectomy. I am going to have rads, and there was no big discussion about that. My tumour was described as >8cm, and so close to the chest wall that they took some muscle to get clear margins. It was also grade 111 and triple negative, so all those things were taken into account I guess.



Had I been offered a choice, personally I think I would accept rads, because I have a high risk of recurrence, and if that were to happen, I would want to know that we had done everything possible to reduce that risk.



I understand that it can have an effect on choices for reconstruction, but on balance I would rather live with no breast than die with a perfectly reconstructed bosom!



Good luck, whatever you both decide!

christine47

Dear husband,



How fortunate your wife is to have YOU on her team! What ever decision you both make will be the right one. I did not have rads, they were not recommend after my surgery. Primary tumor 1.1 cm with .28 cm node, good margins with mastectomy and complete axillary node dissection clear. I did have TAC x 6. I am two years out of chemo and doing well, sometimes I question if I should have had rads, but try not to over think the issue, I am doing great. That is my story and I am sticking with it! Peace in the decision you make.

Colt45

@Morwenna:

Thank you. God bless you and continued good health. You are in our prayers.

Colt45

@Christine47:

Thank you for the kind words and positivity. God bless you and continued good health.

Colt45

Well, we had our 2nd opinion today with a RO.



What a disappointment.



Everything was backwards, IMO.



We had a 1pm appointment with a specific RO at the Cancer Institute of NJ, but instead of seeing him anywhere near that time, we were stuck with a lower tier physician with little experience or resident (I seriously don't know what she was) for almost 1 hour. I won't get into how awful this woman was (inappropriate facial expressions, inappropriate reactions, etc., as we gave our history, and inappropriate comments)... I felt she didn't know what she was talking about and that she was more than willing to cover that up. I know my wife just tuned her out at some point. I stayed engaged, taking notes and asking questions---but I had no faith in her. So there was almost an hour of that, which was preceded by 30 minutes of intake from a nurse in this tiny examining room (and the whole time it felt like we were being signed up for radiation by these 2 underlings rather than merely CONSULTING with the RO we had an appointment with. Finally, at about 2:30pm, the RO comes in. He spends maybe 15, 20 minutes discussing things with us----but the whole time I felt like he wasn't talking about MY WIFE, but rather 41 year old women in general. I think he could have just recorded his contribution on a machine.



They said we are in a grey area and recommended rads.



He said it was my wife's age and that there was some suspicion of LVI on 1 of the path reports.



He was at least worth talking to, but after an hour of the other woman, we were beaten down, I think.



The woman actually told my wife, who had a BMX, that "you probably could have gotten away with a lumpectomy". How UNBELIEVBLE. There's NO benefit to saying that. Her BMX was 6 months ago. The only reason it didn't upset my wife was because we KNOW that BMX was the right choice for her, with the multifocality and with the mammo and MRI missing foci----we had no faith that lumpectomy would get it all. Then this woman was quoting us locoregional recurrence rates for LUMPECTOMY without radiation!!!! And we had an HOUR with this clown!



The mere fact that the RO we went to see would send this woman in 1st tells us to also be wary of HIM. Why would he associate with her? His reputation, IMO, is tarnished by teaming up with her. This was HIS appointment with us... and 85% of it was spent with other people we had no interest in talking with.



What a complete opposite experience from our 1st RO consult----and I'm not even counting the difference in recommendations. I'm talking about preparedness, professionalism. patient-centered care.



And this consult took place in a cramped exam room. Not a meeting room where we sat comfortably and looked each other in the eye. I don't like my wife up on an exam table, me in a little chair and a doctor leaning against a sink.



So here I am trying to not let the unsavory aspects of this poorly done consult get in the way of the RO's points about risks and benefits. I'm trying not to throw the baby out with the bath water.

The RO talked about a 15-20% risk of loco regional recurrence without rads, then adjusted that to 10-20%, then talked about rads reducing that by 2/3 and getting us into single digits, maybe under 5%. He seemed to be all over the place. The woman said we'd get chest wall radiation from 2 beams that would hit the axilla too. No supraclavicular radiation. When I told her about how our 1st RO wouldn't radiate the axilla, but would do supraclavicular and chest wall, she made these funny faces like you make when someone tells you something that makes you regret what you just said. She left the room, came back with the RO and he agreed with US.



What a mess of a consult. I left there with NO confidence in them. If we do rads-----it won't be there.



Now we're left feeling like we need another 2nd opinion because we can't even count this one with any confidence.