Radiation Past and Present I NEED TIPS/ADVICE

enlm20Erica
enlm20Erica Member Posts: 216
edited July 2015 in Radiation Therapy - Before, During, and After

so after double mastectomy, tissue expanders, hysterectomy/oompherectomy, implant exchange surgery I think this all is about to be a thing of the past, but oh was i mistaken...i was never told i was suppose to have radiation my MO said he thought i had seen the RO but i was never given an appointment and he said that it was their mishandling and i should go now to see if the radiation Dr ephod recommend it. Keep in mind i had no positive lymph nodes, clear margins, did chemo and currently taking arimidex...but only because of my age (33) the radiologist recommends i have 30 rounds of radiation...I'm so upset because i could have done this AFTER chemo and BEFORE i got my implants. Please help me guys...any tips, tricks to avoid irritation, skin darkening please let me know...please let me know any side effects and how best to treat them. I just got this news today and go in tomorrow for tattooing...*sighs*

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  • inks
    inks Member Posts: 746
    edited July 2015

    That is a total bummer to hear that you may need radiation after you have completed reconstruction. There is a 3 month window that radiation is most effective after finishing chemo. I bet they are recommending it only based on your age. And it should be 28 treatments. You will likely do fine just listen to what the RO says. Some want to lotion some say to not lotion. Mine told to wash only with soap that has the same PH as skin and to take care of myself - and I barely burned. Good old Dove bar soap was fine and no lotions. My reconstruction is all messed up but that was to be expected, I will get revision this fall. The skin on radiated side will continue to tighten for up to 2 years. But not all will have the same side effects. I hope your radiation will go smooth and your reconstruction results will be great.

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  • NATSGSG
    NATSGSG Member Posts: 231
    edited July 2015

    But did the Dr. know you've already done implants? As far I as I know, radiation is not compatible with implants OR after implants - I remembered asking my RO about radiation dosage difference for patients who have lumpectomy and those who have mastectomy. He specifically stated that mastectomy patients of his DO NOT DO RADIATION, especially if their SLND shows negative. If they do, it's before reconstructive surgery, NOT after reconstructive surgery.

    Please do not do it until you have gotten all the facts of the side effects of post implants radiation, and if it is really necessary. Please also call or consult your reconstructive DR and find out what s/he has to say - s/he can be one of the best persons to give you all the pros and cons of post implants side effects.

    I'm usually not afraid of pushing back the dates when I am uncomfortable or has not gotten all the answers I want, esp how radiation will affect your implants. Remember, you will be the one hurting and have to live with it, NOT that Dr. who recommended it. You may wish to consider getting that Dr. to reply you in an email Q & A (in this way, it will be in writing and asking why it's necessary that you go for post impant radiation). My DR are very good with replying my questions in Q & A format when I forget to ask some more questions during my consults. They are also very good about giving me their email addresses.

    I'm starting radiation on Aug 12 daily after my chemo ended on June 30th, 2015. I had lumpectomy aka Breast Conserving Surgery. This July 29, I will go for markings on my right breast. Was told it will take an hour for that. Then on Aug 11, I will have my CT simulation**. My radiation is only 3 weeks or 15 sessions (10 mins daily). Radiation dosage are measured in grays. The entire 3 weeks is 40Gy in 15 treatments (fractions) over 3 weeks. Five fractions per week, meaning every day, I'm getting 2.67Gy or 267cGy (centigrays) of radiation. Based on the latest clinical trials, this is the least damaging and most effective dosage at this time per my RO.

    So, you need to find out all these information. Any dosage higher than is not necessary per my RO.

    ** Please note there are 2 ways for radiation treatment

    1） Lying on your back;

    2) Lying on your front with your breast protruding into two holes like you would do when you are getting an MRI.

    You will want to choose ONLY (2) because then your lungs will NOT be radiated and suffer harm. If wherever you are sent do not have the lying face down position, you will need to find out which hospitals in your area have it and go there. You should insist upon it. Again, take charge of where you will get your treatment, if it is really necessary.

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  • muska
    muska Member Posts: 1,195
    edited July 2015

    Erica, radiation can be done with implants in and some institutions routinely do it after the expanders have been exchanged for permanent silicone implants. Radiation does nothing to the implant but it might have impact on the tissues surrounding the implant. I consulted several specialists prior to deciding when to have the exchange surgery - before or after radiation - and eventually decided on getting the permanent implants first. All worked out well.

    The question I think should be whether you need to have radiation. Also, as Inks mentioned above it is believed that if the gap between completion of chemo and start of radiation is too long it starts losing its effectiveness. When I had my consult at Dana Farber in Boston, I was told ideally radiation should be started as soon after chemo as possible but no later than 8 - 9 weeks post chemo. Apparently, its effectiveness gradually decreases if started later.

    Maybe you can get a second opinion.

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