Rads - What Would You Do?

JoeyAnn

Rads - What Would You Do?

JoeyAnn

I am nearing the end of my chemo -- last treatment is next Wednesday. Can't wait for it to be over! Now the question is what about radiation?

I was dx'd with ILC in February. My tumor was estimated at 7 cm. I had a bi-lateral mast with immediate reconstruction. Two of the three nodes in my sentinel biopsy were positive, so then 12 more were removed in the axillary. None of those 12 were positive. Regarding the margins, the path report notes, "totally excised by microscopic examination, but approaching the inferior, inked margin to 1 mm grossly and 5 mm microscopically."

One of the reasons I opted for the mast was to avoid radiation. I couldn't (and still can't) bear the thought of going to radiation for six weeks. Additionally, I have very fair skin, and can't imagine what radiation might do to it, not to mention the implant. My initial discussion with my onc was that he did not think radiation was necessary. At my last appointment, I reminded him that he had a concern early on regarding the margin. Onc said he could consult with the radiologist regarding this. In my heart, I still don't "want" to do the radiation. On the other hand, my choices regarding treatment so far have been guided by trying to do everything I could to avoid a reoccurrence. The goal of doing everything I can at this point, however, is competing hard with my desire to be done with treatment and avoid radiation, however.

So . . . I trust my onc's judgment . . . if he says at my next appointment that they recommend radiation, I'll go through it. However, if he says, "No, I don't recommend it BUT . . . it's your choice" then what do I do? If you had the "option" to take radiation or not take radiation, what would you do?

Thank you all for reading and considering. There's so much knowledge here. I truly will appreciate hearing your experiences and opinions.

nash

Is there a way to have the path slide reviewed? My tumor was going into the pectoralis muscle, and orginally they thought the margin was dirty. The surgeon asked for a review, and they decided that the inked margin had "run", and that the margin was actually clean. Maybe they actually got a wider margin than orginally thought.

Also, I think some labs consider 1 mm a clean margin. Others say 2 mm. So it varies.

You're right to go with the onc's recommendation, obviously, but if he leaves it up to you, it sounds like you may be able to get away with not doing rads. 

wallycat

Does your hospital have a tumor board?

If so, I would ask them to discuss your case and see what other doctors think.

I did bilateral to avoid radiation, but if it were necessary, I would have done it.

I think we all would do anything to live and prevent a recurrence, but it is the gray that is the most frightening and confusing.

 After going to a tumor board, I would not look back on your decision.

There are women who only have mastectomy and no further treatment and never have a recurrence and I know a woman who had chemo AND rads plus lumpectomy and had a local recurrence and needed chemo again.  I think each tumor/cancer/person is so different that sometimes we have to trust our medical team and then just feel strong.

I wish you the best.

I am a worrier and probably relate to you more than you know!

CherylG

If it were left up to me I would do it... in fact I did. I am determined to do all I can. Rads weren't bad at all... just time consuming. I too have very fair skin that burns easily. I had minor burns (no worse than sunburn) and the nurses monitor your skin daily... if they see a problem you get an rx for cream. The decision was mine and I am glad I did it.... I celebrated my 2 years all clear last month.

minuet

My understanding is with a tumour over 5 cm they usually recommend rads regardless of node status. Tough decisions though.

I decided to be aggressive and did everything suggested.

Mo

Lynn12

I had a 7.5cm ILC tumor, multi-focal and found in all four quandrants of my right breast.  The inferior margin was 1mm.  My surgeon did consider the 1mm margin clean.  The radiation Onc said that they recommend radiation for tumors 5cm+ or 4+ positive nodes. 

To be honest, I thought radiation was almost worse than chemo.  I had a really rough time the final 2 weeks. But I healed up really fast after.  Although it was hard, I have no regrets.  I wanted to hit this beast with the big guns the first time around.  The radiation protects against local recurrence and I feel more protected now that I've done it.  I am having proph. left mastectomy w/ bilateral DIEP in December.

Congratulations on your last chemo next week.  Best of luck!

JoeyAnn

Thank you, thank you.  Yes, I'm a big-time worrier.  That's a good part of it . . . I think my treatment decisions so far have been based on "hitting it with the big guns" and therefore avoiding later worries or regrets.   And I have also come to believe that avoiding worry is good for my overall health, so I need to feel comfortable with the final decision and not continue to stew over it.   I guess I've just avoided exposing the fair skin to harsh conditions for such a long time that this is really causing a conflict for me.  And I have a strong desire right now to just be done with treatment.

I'm going to develop a list of questions for my next appointment and go from there.  I feel like I had a list of options and decisions to make when I was first dx'd.  It's as if I'm at another critical decision point now and need to find the strength to explore the options, the consequences, and the benefits again so that I'll feel like I've done everything I can.  Thank you for giving me the information and the strength to face this.

lesley_donna

I had a bilat mastectomy with an 8cm tumor, 19 nodes positive and two small tumors in the opp breast.  Yes i did have rads, with a bolus, but only on the large tumor side.  The other side had already been radiated after a lumpectomy two years ago.  I was at very high risk of recurrence to the skin though.  I was advised not to consider an immediate reconstruction because of the rads.  If i got clear margins and small node involvement, i think maybe the rads after mastectomy might be a bit of overkill.  In the end though, you have to make a decision based on how you feel about it all.  Like Lynn12, I found radiation caused a horrible burn and i was really very sore for about four weeks, after it was finished.

JoeyAnn

Just an update.  Thank you again for your advice.  I am being scheduled with the radiologist (my onc did not get the opinion independently).  No problem.  I'm sure it's hard to get another doc to respond, unless the patient is right in front of them.  I finished chemo yesterday, and am so glad to be done. 

Is the bolus the same as "mammosite"?