Help Sisterhood! Radiation or Mastectomy?

Hello to the Sisterhood!
I am the one that was terrified of chemo.
Well, I have two more to go, so I think I'm going to make it. Very brutal five months. I have 3 positive nodes, no "detectable" breast tumor per mammogram, ultrasound or breast MRI. Estrogen +, Hers 2u - neg. The physicians I have seen recommend radiation - full breast, axilliary and super-clavicular. I was more comfortable with a double mastectomy and just axilliary and super -clavicular radiation, (they wouldn't do breast, if removed) They will do whatever I decide. Now I am re-thinking the double mastectomies. Has anyone else had to make such a difficult decision? Help!
I would appreciate your coments.
PS - My biggest worry is how to find future breast cancers if breasts are too dense nothing can find it before going to nodes again!
Thanks,
Bonnie

 

On 5/9/2009 Bonniee wrote:

Hello to the Sisterhood!
I am the one that was terrified of chemo.
Well, I have two more to go, so I think I'm going to make it. Very brutal five months. I have 3 positive nodes, no "detectable" breast tumor per mammogram, ultrasound or breast MRI. Estrogen +, Hers 2u - neg. The physicians I have seen recommend radiation - full breast, axilliary and super-clavicular. I was more comfortable with a double mastectomy and just axilliary and super -clavicular radiation, (they wouldn't do breast, if removed) They will do whatever I decide. Now I am re-thinking the double mastectomies. Has anyone else had to make such a difficult decision? Help!
I would appreciate your coments.
PS - My biggest worry is how to find future breast cancers if breasts are too dense nothing can find it before going to nodes again!
Thanks,
Bonnie

Hi Bonnie,

I know what you are going thru trying to make that decision.  I had 4 positive lymph nodes.  I had a double mastectomy along with 14 nodes removed, three phases of chemo and was on herceptin for a year, now I am on Zometa every 6 months.  I chose not to have radiation.  It was a very hard decision because with my whole team of doctors, some said I should and some said it was my decision.  I was told the rule of thumb was 3 positive nodes or less, you don't need radiation.  I had 4 but still decided against radiation.  My mastectomy was necessary, though, my tumors were in several places.  I was just very nervous about radiation.  I never felt it was right for me from the beginning.  I understand radiation when you have a nonoperable tumor that you need to shrink but I just kept asking what if you are just radiating good tissue since my tumors were removed with surgery and anything left was hit with chemo. 

I wish you the best!  Stay positive, it helps.

Stacey

 

 

Stacey, Thank you for for your kind reply. I already have lymphedema, which is another complication of radiation. I will probabyt chose mastectomies and radiation to the axillia and above the clavicle, as was recommended. One radiologist reccommended chest wall also, but I will pass on that because it could damage the lungs and possibly heart. A lot of their recommendations depend on type of cancer, markers, etc. How are you doing with the Zometa? Bonnie

 

On 5/15/2009 Bonniee wrote:

Stacey, Thank you for for your kind reply. I already have lymphedema, which is another complication of radiation. I will probabyt chose mastectomies and radiation to the axillia and above the clavicle, as was recommended. One radiologist reccommended chest wall also, but I will pass on that because it could damage the lungs and possibly heart. A lot of their recommendations depend on type of cancer, markers, etc. How are you doing with the Zometa? Bonnie

Hi Bonnie -

I was diagnosed with Stage II breast cancer, node negative, estro positive, ductal 60% in situ, 40% ragged edges.  I found the lump myself after self exams and insisted on an immediate mammo.  I have always been faithful about self exams and annual mammos.  The mammography showed nothing but I was persistent.  The radiologist herself came in and did a follow-up sonogram and again, found nothing.  I took her hand and made her feel what I was feeling.  She did and said it was nothing - come back in 6 months.

 

I waited 2 weeks and made an appt. with a surgeon who specializes in breast cancers.  He examined me, looked at the previous films, and said "if you can trust 3 MD's (ob/gyn/radiologist/surgeon), 2 mammograms, and a sonogram  then I will do a biopsy.  One week later he called me at home to tell me I had breast cancer in my right breast.  My breast are very dense.

 

After talking to others in the medical field and doing lots of research on line, I opted for a bilateral radical mastectomy.  My thoughts were if they could not find the first cancer, they would not find the second if it occurred.  Most MD's assumed I would get immediate reconstruction but I opted for none.  Because I opted for the bilateral radical mastectomy, I avoided radiation.  There was no need for chemo.

 

It's been 7 months and I am doing FANTASTIC!  I wear prosthesis breasts (my originial size was a 38D and I chose to be a new 38B), my husband still loves me, and I feel better than ever.  Really.  I am taking Tamoxifen and guess I will for 4.5 more years.  You will be fine, life goes on, and you will be happy again.  Best wishes to you!

Thank you so much for your sorry. Yes, we must persist - we know our own bodies! Your good judgement and persistance saved your life! Good for you! I am glad you are doing well! I may get there then?! Bonnie