Need advice - Anyone chose not to do radiation

Brenda26

I have IDC with a 5 cm tumor and positive node that is now basically gone after chemo treatments so far.  Still have 8 weekly treatments left of Taxol.   I am trying to decide if I really need to do the radiation or not.  Can't seem to get any answers from the docs I am using, med onc and rad onc..  They just say they recommend it and it could make a "significant" difference, exactly what does "significant" mean?  ARgh !!   My issue is so far I haven't found a PS that will do mastectomy with immediate reconstruction if I am going to have radiation after the surgery.   I reslly, really, don't want to have two surgeries and also fnances and insurance is a factor.  Already met all my out of pocket expense with the insurance this year and if I have to wait until next year for reconstruction then I am out more $ that I just don't have.  Worried that the PS will want up front $ for surgery next year if I haven't met my out of pocket expense.  Thankful I have insurance but just make it paycheck to paycheck as it is. Really want to see if anyone has chosen not to have the radiation and had a large size tumor with postive node.

helena67

Hi,

Maybe not what you want to hear, but please consider your health and your life first....That is just my 2 cents. I have not done any reconstruction yet - I will do that when the time is right, whenever that may be. Please take good care in treating yourself. Don't skip radiation because you want to do plastic surgery.

Best wishes, Helena.

lexislove

Please DO the rads. I'll be very blunt, whether you want to hear this or not, you are in no position not to do rads.

I would be very very surprised if any doc said that you don't need to do radiation. 5cm tumor = rads. It is great that you had a good response to the neo adjuvant, but rads are still in order.

idaho

Your onc. can look up the percentage that rads will help you-  if he won't find one that will... Might help you make the decision... Press him and get an answer!    Peace to you,   Tami

FACECRAFTER

brenda,

Probably not what you want to hear, but..DO the rads.  You will have reconstruction, (expanders) put in at time of surgery, you cna have rads with the expanders-- see the radiation with tissue expanders board--

Your health has to be your first priority..  You had chemo, with a 5cm tumor and lymph node involvement..  now is the time to have the surgery, and then radiation to clean up any cancer cells that might have migrated from the original position.  Don't sell yourself short and do your own diagnosing..  That's a recipe for disaster.  

You desire to be 'whole'..we all do.  But being whole and worrying about the next recurance is a hollow victory..  I'm sorry to say, but get the rads.   By the way, I have the same diagnosis as you do.  IDC, larger tumor (not as large as yours) and with lymph node involvement.  My tumor responded to the chemo really well..I didn't expect to have radiation, but I did, and I'm glad I did.

  I just finished over the july 4th weekend.  Now I'm on to finishing my fills, and then to reconstruction.    Good luck to you..Remember, put yourself first...and your health first..You'll be glad you did.   JUDY

NatsFan

Brenda - I was scheduled for a bilat mx with an immediate DIEP recon but a week before surgery a biopsy on a suspicious new lump in my armpit showed a positive node.  With radiation uncertain, I postponed the recon, and just had the bilat mx, skin-sparing, with tissue expander placement. 

While I hated the idea of two surgeries, I really hated the idea of making an important decision about whether to do rads so quickly.  By delaying the recon, I gave myself several weeks to thoroughly research rads and to get consults with two different rad oncs before I made my decision.  

As it turned out I declined to do rads.  I only had the one positive node, and my tumor was smaller than yours, although it was Grade 3.  The first rad onc I went to was like yours - he told me it would give me benefits, but declined to give me numbers and refused to discuss the results of studies I'd researched on how they applied to my case.  The second rad onc was wonderful, gave me specific percentages, and went over all the studies I'd reviewed and had questions about.  Additionally, three different med oncs in my med onc's practice felt that I was OK without rads.

In my case, the studies show that radiation made no difference in survival rates. As for loco-regional recurrance rates, there's some benefits, but about 90% of women in my situation are radiated for no reason - 85% will not recur whether they have rads or not, and 5% will recur if they have rads or not.  I was comfortable with that 10% difference. Others may not be that comfortable.  The rad onc said she would have been comfortable with whatever decision I made, given that I was a borderline case where the potential benefits were a pretty close balance with the potential detriments (LE, heart damage, etc.).

I know insurance and finances can be an issue, but if it is at all possible, my recommendation would be to go ahead with the mx, but delay recon and give yourself the time to research your options.  In retrospect, it wasn't a bad thing at all that I delayed my recon, and in some ways it actually turned out better.  

Marple

IMHO.......do the rads. 

Brenda26

Thanks everyone for all your help - I think I have finally come upon a PS willing to do the bilat mx with immediate diep knowing that I will probably need rads after.   From what I am hearing from you all it seems that the main factor that makes rads important in my case is the size of the tumor.  So yes, I am now pretty decided that I will complete the rads to be sure this is all and done with.  I am still going to discuss it with my docs and try to get specific into on the benefits vs. not taking rads.  Would just make me more comfortable I think.  Have an appt today with a second onc to see what his opinion on my treatment is.  After reading your reply NatsFan I am also going to make an appt to see another rad onc for second opinion.  Seems like the best advice from everyone is to get opinions from different docs so that I will have all the info I need to make the best decision.   Again, thanks so much for all the replys -

Carjan

Hi Brenda,

Getting a bit scientific...you have to think of this on a cellular level.  I saw it as follows: the 'chemo' goes after the 'floating abnormal cells' in my system.  While the rad blasts the m-fers where they were initially found.

Hope this helps.

nelia48

In my humble opinion. . . . it only takes ONE stinkin' cell to cause trouble later on!  My oncologist told me if I did NOT have rads, it would increase my chances of the cancer returning by 20%.  It was a no brainer for me.  Do the rads!

makingway

I am choosing not to do rads. Initially I was willing to do the rads, but not do chemo. Now I have reversed my decision. I did this based on all the reserach I've done. I got a tissue expander at the time of my unilateral mastectomy. People that have flap surgery have a better outcome of success, so you're good there. I am going to do chemo, but not w/o the Penguin Caps to keep from losing my hair (fingers crossed) It's worth a shot! Radiation can cause heart damge if it's on your left side. It can cause lung cancer, and because I'm a smoker I thought of all cancers to get I would think it would have been lung cancer. Also, it increases your chance for developing lymphedema-a life long debilitating disease. And I've seen too many pics of shriveled up boobage after radiation had been done to them.

My tumor was 4.0 cm and I had ILC ER+ PR+ HER-2 -

lexislove

This is always a "iffy" topic. I understand the fear that comes with the whole rad and reconstruction issue.

The whole risk of heart damage from radiation is very..very small. Can it happen? Yes. Odds are in your favor that it won't

I have had radiation WITH my tissue expander in place.I am having my exchange surgery this Fall. My skin is fine and my mastectomy scar is barely noticeable.My port scar is more obvious.

I hope you don't base your decision with rads on cosmetics. Radiation has been proven to be beneficial to woman. Really, whats the point of having perfect breasts IF you were to recur or are 6 feet under?

anji111

I agree with you Lexislove.  I saw my Radiation Onc recently and if I was in Calgary I wouldn't have been offered rads because I only had one positive node.  They would have considered me borderline.  Because I am being treated in Edmonton they offer rads automatically (thank god).  The doctor said that studies have proven there is more benefit to having rads than not.  My one positive node was under my arm.  They are going to zap the other nodes in my chest and neck area.  The other two places where it could have spread.

When I was diagnosed the Onc said my chances of lasting 10 years if I do the chemo, herceptin and tamoxifen was 82%.  Pretty scary, 18% is too big!  If I can lessen that number by even 1% by doing the rads I am going to do it.  I have kids and sooo want to be a grama one day!  As for getting a new boobie, I can't even think about that right now.

It's really too bad if insurance is an issue.  But honestly, I think a person's health is the most important thing.

Good luck with your decision.