Bilateral Prophylactic Mastectomy scheduled July 10

psalmist · July 2008

I've been in treatment for LCIS and other complications for several years and have recently made the decision along with my very supportive surgeon and cancer doctor to have skin sparing BPM with immediate reconstruction and just be done with it. The constant surveillance, worry, bad mammograms, and frequent biopsies have gotten very old. I could not tolerate the Tamoxifen so I gave it up; besides, with fibroids in my uterus I worry a bit about the side effects of that drug on my "other end." My mom had breast cancer (bilateral mastectomy 5 years ago), a great aunt died of breast cancer, and I have very dense breast tissue as well as fibrocystic disease. Microcalcifications have appeared on my last two mammograms and the docs are chasing down every threat -- thereby giving me a mastectomy a chunk at a time. Bottom line - if my boobs are trying to kill me, they have to go first.

I am, however, surprised at the strength of my emotions surrounding this decision. I am 52 years old, in excellent shape, and athletic. I recover well from surgery and want to continue my active, healthy lifestyle. This seems like a no brainer to my loved ones, but honestly, even though my small breasts are not my "best feature" they nursed two babies and are part of ME. Knowing I have only four more days with nipple sensation and soft squishy breasts is a downer. I keep thinking of the alternative - more surveillance, more biopsies, more worry, waiting for the "horse to get out of the barn," and I know in my heart this is right.

I would appreciate any words of encouragement out there. I think I will need something to fall back on next Friday morning...

jezza · July 2008

I had a mast. in Jan. 1992, My surgeon thought I was high risk to get BC in my other breast as I had a family history.

I thought about it for 6 months...was very paronoid about having checkups on the other breast. I went ahead and had the prophylactic mast. on my other breast in July of 1992.

It was a big decision and lots of "friends" thought I was overreacting. But I felt it was right and in hindsight with no recurrence in all these years I know it was the right thing for ME to do.

You have obviously thought long and hard about this. Sure you will miss your breasts...its certainly not the same but you are very lucky to be able to have the skin sparing mast. with immediate recon. I have heard this gives excellent results.

Hugs

jezza

Misty3 · July 2008

Hi psalmist, I can't really offer any advice but I will offer my support and prayers. It sounds like you put some serious thought in to your decision and you are at peace with that decision. Sometimes, you just know.

I visit a website of a lady who has a philosophy similar to yours about your boobs trying to kill you. She designed a T-shirt with that very message ( she is a PBM girl herself ) Check it out--it's kind of cute and relevant. http://tinainthepink.blogspot.com/ Scroll down the page and the T-shirt is on the right side.

My best wishes to you and take good care.

psalmist · July 2008

Thanks for the link, Misty3 - Tina is an amazing survivor with a great attitude. I enjoyed reading her posts! I think I might order the TShirt to wear in my next 5K.

psalmist · July 2008

Jezza,

Surgery 16 years ago... and you still read breast cancer posts. Thanks for sticking around to cheer others on - it is very kind of you and very comforting.

The thought that I may be overreacting sticks in the back of my mind, but it is attached to what others may think, not to what I think or my husband or doctors think. For that reason I haven't brought very many people in to my circle of confidence. I decided some information (like what you do on a honeymoon, for example) is in the the realm of "things you need to NOT know." Hopefully our local medical community keeps things quiet.

tinainthepink · July 2008

Hi Misty3,

Thanks so much for the supportive comments about my site and my shirt - I am very touched, thanks!!! I can say that it is so much easier to have a positive attitude about this whole thing than a downer one.

Hi psalmist,

Also, thanks so much for the wonderful comments - my, I am blushing! You probably already saw the photos, but I wore this at the 5K in June and it was hit for sure. It felt so good to put a smile on so many people's faces.

To you both - Thanks again, take care and be well~

Tina - aka tinainthepink!

Misty3 · July 2008

Happy you dropped in Tina. Come back anytime!

femme · July 2008

Dear psalmist,

In spite of a very unusual failed reconstruction (pc making very many bad judgement calls) I would still do the PBM over again. The idea that I have reduced my chances so dramatically of not getting invasive breast cancer, is important to me. Now how's that for a testimonial? I do know that each person is different and each person has her own tolerance for risk. I respect everyone's opinion and the decision each of us makes.

I never regretted having my PBM!

femme

BMac · July 2008

Psalmist

I had a bilat mast on Apr 30th. Cancer in left, right was prophylactic due to high risk because of BRCA1. I found the few days before the surgery were the worst. I was tearful and, I think, mourning the impending loss of my breast. I too have always been on the small side but I like the "girls". I can honestly say that I am fine with losing them and feel very good about how I look. I have to wait a couple of years for recon which is a bummer but it's something to look forward to.

I was only in the hospital overnight and felt fine when I went home. I was very tired though; always am for quite awhile after anasthetic but other than that okay.

ehall · July 2008

Huge hugs go out to you! Its clear that you have have given this a lot of thought. I too had a bilateral mast. last september--cancer in left breast but chose prophylactic on the right breast. I'm 46 and like you very active. I think being and staying active will definitely be a huge plus in your recovery. Ok--I had some dark emotional moments but never regretted my decision or looked back. I'm 7 weeks out from my expander exchange--and look & feel great.

Take care of yourself, let others pamper you, and be patience through the process.

Erin

femme · July 2008

Dear BMAC (Barbara)...I am curious, Why will you have to wait a couple of years for recon?

femme

TenderIsOurMight · July 2008

Six years have passed since my PCM (prophylactic contralateral mastectomy) due to the chronic lumpiness of the breast, its density (with failed pickup on mammogram on other breast) and the usual repetitive FNA's and two biopsies. Preceding PCM by one year was a highly advised mastectomy for my primary cancer (margins, multifocality, edcis). Five years after above I underwent reconstruction with silicone.

I do miss my breasts, no doubt. But I do not miss the treadmlll which often we are on (for me it spanned a decade), the chronic unease, and of course I take strength that new and recurrence locally is much less (about 1%). And for distant recurrence, I'm fortunate to be able to take a hormonal.

Surgeons and breast oncologists have noted an upswing in PCM and I think some for mastectomy also. The human side of laying awake at night times x, waiting for another biopsy or imaging report, the dread of even a more advanced state than original, the slowness of the medical system in giving reports to patients, and for some, the unfriendly attitude towards open-mindedness and stress reduction proactive choices, all point to reasons for this upswing in women progressing to PCM, and at times mastectomy instead of lumpectomy and radiation.

Still, as I write, I do believe these surgeries will start a downward slope soon. And I am glad for this, if all goes as planned. This is based on the miracle insights coming from newer techniques involving MRI and PET scans, the definition of one's tumor genotype, recurrence analysis, protein marker analysis, and personalized chemotherapy as well as personalized circulating tumor detection states. Maybe I'm naive, but sooner than later such progress may allow less walking on the breast cancer treadmill in general (diagnosis, biopsy, analysis, report, treatment selection), and this would be all for the better.

I wish you peace in your choice, psalmist. I wish I recalled a psalm of quietude, faith and hope for you now as your surgery approaches.

Tender

sunkistmi · July 2008

Hi Psalmist,

My thoughts and prayers go out to you. April 2006 I had DCIS dx in rt breast. I had a lumpectomy w/o clear margins so ended up with a mast w/immed SIEA recon. I had it done in SC and had excellent results. I now have sensation in both the breast and nipple. Unfortunately, I have now been diag w/DCIS in the left breast. Since I no longer have any tissue in my tummy, they will be using the tissue on my inner thigh, a TUG flap. We can't go back in time, but I sure wish I would have done the bilateral when they asked me if I wanted it two years ago. I wouldn't be facing another surgery if I had done so.

I think everyone may have doubts and second guesses as they approach surgery. This surgery coming up will be my 22 & 23 so I am just wanting to get it over with. I think once I am able be get a date scheduled I will be happier.

What kind of recon will you be having? I'm sure it will be just the right choice for you and the fact that you will not have to worry about mammos and the other stuff make it even better. I will keep you in my prayers on Friday and pray that all will go well. May God hold you fast in His hands.

Sunkist in MI

psalmist · July 2008

I just got home from work, finished dinner, and opened my laptop to read all the posts above from Sunkist, Tender, Femme, Erin, Barbara and I re-read the ones at the beginning of the post. I sit here with tears of gratitude for your encouragement -- you don't know what it means to have your thoughts and prayers and to hear your stories. Thanks each of you.

I am counting down the days to surgery by jog/walking 4 miles a night - it's therapy for me to work up a sweat. I decided a few years ago when peri-menopause hit me that aerobic exercise is my meno-medicine! It gets me out of the doldrums. And Psalm 23 is always a wonderful comfort.

Sunkist, in answer to your question I will be having immediate recon w/expanders and then implants. My surgeon isn't up to speed on all the newer flap procedures, and I don't have enough belly fat to build two breasts. I worry about having rubbery breasts, but I just hope to look normal in clothing. I'm hoping the recon is successful and that I don't have any complications. Femme, I am so sorry about your failed recon! My PS did tell me that I could face any number of problems and to remember why I am doing this in case that happens. I keep his realistic outlook in the back of my mind.

Again - may thanks to all of you. I am normally unemotional, but each day I find myself close to tears very easily. I know this too shall pass. I guess I am just saying goodbye to the girls.

sunkistmi · July 2008

Psalmist,

I think tears just are part of this dx. I believe we go thru all the stages of grief, whether or nor we end up losing our breasts. When I first started this journey, I remember my feelings after the bs told me the margins weren't clean and I was faced with further excision/rads, mast w/recon or just mast. I walked out of the office & my DH and I were going to have lunch. I was so disappointed and very angry. As I sat there, I told him that I just wanted it off. I could wear a prothsesis and be done with it. I even called the office back to schedule the appt. But I believe now that God knew I would not be able to handle it. It was less than a week later that I was led to the website that landed me to Dr. Allen and my appointment for surgery w/him. Not only that but the new date was 2 days after the original date I had scheduled. There had been a cancellation; his next opening was in June. I truly believe that God's hand was so evident because I really don't feel I would be where I am emotionally if I had just the mast. I remember my mother and her feelings about her body after her mast, how uncomfortable she was wearing the prothesis. Of course, 22 years ago the options were not the same as they are now. I feel she would be so proud of me and the woman I have become. Someday, she will tell me so.

As far as being unemotional, I think that is an impossible condition with this dx. Our bodies have SO much emotion that to hold it in would be detrimental to our health, both physical and emotional. Tears have value. I know for the first couple of weeks after the second dx, it seemed that all I did was cry. I'd be fine for awile, then be bawling.

I volunteer up at our local PetSmart every other Tues cleaning the cat cages and playing w/them. The Tues after I found out I walked in there, saw several of the older cats that have been there several months and burst into tears! There were 5-6 people in there. I couldn't even talk, but I realized it wasn't about the cats several hours later. I am fostering a mama and her 5 4-wk old kittens. They make me laugh and have kept my mind off ME.

During my last go-round w/the surgery, I had so many people praying for me. I know it played a huge part on my pre-surgery, surgery and recovery. Cover yourself with a quilt of prayer friends. Add me on as a square. When you are feeling particularly alone, afraid, confused just spread our prayers over you for comfort. Of course, the Psalms' are a wonderful source of strength and comfort. I had a friend that recorded favorite verses on a DVD that I was able to listen to during pre-op. I went into surgery very calm.

As I said before, I will be praying for you on Friday. What time is your surgery? I'd like to be praying specifically during your surgery, for you, the doctors and all their support staff. You will be fine because you will be in God's hands and in lots of sisters prayers. God bless you.

Also in His hands,

Wendy aka Sunkist in MI

psalmist · July 2008

Thanks for your prayers Wendy! I believe very strongly in prayer and appreciate knowing you are standing with me. My surgery is actually Thursday, July 10th, at 10 AM, and I meet with my PS on Wednesday at 7:30 AM for some pre-op instructions. Like you, my surgery date was an unexpected blessing -- originally it was set for mid September, so when this date opened up i was very pleased, as it will work better with my job schedule.

Your recon sounds like it helped with the process a lot. I chose it so that I don't think about BC or LCIS or biopsies everyday when I get dressed; although I may think of it a lot for awhile - at least until this process is completed!

Anonymous · July 2008

psalmist-- I love what Wendy said about a "quilt of prayer friends"--add me on as another square! I will be praying for you on Thursday. I was given a beautiful prayer shawl from church that I wore to the hospital before my hysterectomy--I had very little pain and I know that all the prayers had a lot to do with that. Now I routinely wrap up in it before every mammo, MRI or other procedure: not that I think it will change the outcome necessarily, but it will give me the strength to deal with whatever happens.

Anne

lisakaren · July 2008

Hi. First time on this. I am having PM next week. I did other breast 4 years ago. I had LCIS found after having 3 phyllodes tumors (rare) and with 3 lumpectomies, the breat collapsed so that was a no brainer. I had reconstruction and it is terrific. I wish I had had the courage to do the other breast then, but can't go back. Therefore, time has come to do other side now. Some questions:

whether I do nipple-sparing mastectomy and if I do or do not do the sentinel node biopsy for PM? I would appreciate anyone's help and advice as I need to make a decision quickly.

Thanks, Lisa

psalmist · July 2008

Lisa,

My PM surgeon won't do nipple sparing, as he believes there would be too many breast cells left behind and with them that much more risk. My PS is going to reconstruct the nipples and from what I hear he does beautiful work. We shall see... tomorrow is my surgery. I am new to this site as well, and the support has helped me SO much. Just knowing people are praying for me and rooting for me has made this whole process much easier. I appreciate your comment that the reconstruction is "terrific." I hope my results are as good!

I understood when you said the breast "collapsed" after your lumpectomies. My left side looks like something took a bite out of it! I wish you well -- and I'll check back to see what's up with you. God bless!

psalmist · July 2008

Thanks, Anne! I've got a nice covering of prayer going in to surgery tomorrow. I had a great day today and feel very good.

Thanks again, everyone, for the encouragement, the information, your stories. I know I'm going to be okay.

sunkistmi · July 2008

Lisa,

My PS also will not do the nipple sparing mast. Skin sparing, yes.

Psalmist, you will be held close in heart and prayer tomorrow. I know God is with you and will hold you tightly in His hands. I pray that the surgeons and all those involved with your care will sense that they, too, will be held up in prayer. May you have a sweet and restful nights sleep, waking in the morning confident in a successful day. I pray that pain will be kept at the very minimum and that all your needs will be met quickly. I also pray for your family and those that love and care for you. May they rest assured that you are in His care. Sleep well dear sister in Christ and sister in this journey we walk together.

In His love,

Wendy

P.S. I found out today that my surgery is scheduled for Aug. 4. Thankful I have a sense of peace. Now if only time would fly!

jezza · July 2008

Hey psalmist

Just called in to wish you all the best for your op.

Hope it goes well. I'm sure it will.

If it relieves your anxiety as much as my bi-lat relieved mine..you'll be a different person.

No more mammograms!!!!!!!

Hugs

jezza

Misty3 · July 2008

Psalmist, You will be in my prayers this day and until we hear from you after surgery.

God bless you and the doctors and nurses who care for you.

lvtwoqlt · July 2008

Palmist, I just saw this thread, I was also on the rollercoaster of mammo/biopsies. after 3 yrs and a dx of DCIS, I too opted for bilat mast, one side with DCIS the other was preventive. It is a hard decision and sometimes I still wonder if I did the right thing but my hubby said that he would rather have me here with fake boobs or no boobs than not have me here. He wants to do a shirt for me that says 'these are fake, my real ones tried to kill me'.

you are in my prayers today and good luck on your recon.

Sheila

TenderIsOurMight · July 2008

Support being sent your way today, Psalmist.

Tender

femme · July 2008

Psalmist-you have many layers of "quilts of prayers," pieced together from good strong woman on this site, who are also holding up the "sky" over you. Be safe and well and come out of this healthy and of good spirit.

femme

psalmist · July 2008

My thanks to all of you for your prayers and support. It is day 3 post op and I am beginning to have an appetite again. My first day was tough painwise as was the second. Really, it is the expanders that I feel the most. The PS filled them only 30 cc and will do another fill in a month (same amt), and after 3 months I have weekly fillings at 30 cc. he will slow down if I experience too much pain.

My daughters and husband are taking excellent care of me, and my oldest sister stopped in for a couple of days while on vacation. She is amazing! She got to our house an hour after my discharge from the hospital and came bearing a huge sub sandwich for everyone to munch on plus a large frozen lasagna to bake for supper. She is always thinking ahead.

Not much output in my drains, as I was fairly small busted, so they might be able to come out early. I would really like that! Taking one pain pill every two hours and keeping ahead of it. Yesterday very nauseous so I stopped the narcotics, but my pain got out of control (shaking and shivering, flushed, extreme nausea). We found some Phenergan which helped and I started back on the Oxycodone. I wouldn't suggest getting off that in the first couple of days! Just an FYI for you Wendy!

I feel very peaceful-- almost a celebration of knowing the fear is over. I know God is watching over me because of everyone's prayers and I sense His strength. God bless each of you!

leaf · July 2008

I'm so glad that things are improving for you, psalmist! Keep up on those pain meds- as you know, pain slows healing!

I am so glad the fear is over. That sounds so wonderful! Best wishes for a very speedy recovery, and back to your normal life!

Misty3 · July 2008

So glad to hear from you, psalmist! I'm glad you are doing better by the day! Keep the updates coming and take good care.

BMac · July 2008

Femme, just getting back to you today; sorry for the delay. My surgeon said from the beginning that I couldn't start recon right away because I was having rads. He says to wait two years to make sure that there is no recurrence. Rads would be detrimental to reconstructed breasts meaning they would have to be removed and then redone. I think his major reason is to be sure that there is no recurrence.

However, when I phoned the doctor I have chosen for reconstruction the receptionist had never heard of waiting two years. Obviously I will discuss all of this with this doctor and go by what she has to say. After all, she is an expert in this field whereas my surgeon is not an expert in reconstruction although he works closely with doctors who are. As I said before I will probably have to wait two years anyway due to the lack of OR time.

jezza · July 2008

Good to hear from you psalmist....didn't expect to see you back posting so soon..well done!

You are doing the right thing..just relaxing and letting your family take care of you.

Those expandes DO feel strange, especially at first.

I'm sure you made the right decision and so pleased that you are feeling at peace.

Yes...when you are feeling better..celebrate!

jezza

Bilateral Prophylactic Mastectomy scheduled July 10

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