After the Breast Cancer Diagnosis: Now What?

Diagnosis: DONE.

Next steps: Information gathering and making a PLAN.

The Husband and I are planners. Good planners.

After a weekend of diagnosis digestion, we set up a series of meetings with doctors in Santa Barbara: oncology, plastic surgery, radiation oncology and “my” surgeon. Pages and pages of notes, full of various opinions and strategies. I was seriously impressed with all of the physicians we met. They were all punctual, professional and articulate: a real Silver Lining.

During the information gathering week, I had a PET-PEM scan (a scanning system that provides functional imaging specifically for breast cancer detection [1. http://www.archrad.com] )  to try to figure out what is going on with the lesions in the left breast and an enlarged lymph node.

Did I forget to mention that lymph node? Sorry. It jumped out on the MRI, showing activity, and definitely warrants further investigation. The PET-PEM was inconclusive, meaning that it was not possible to determine what is going on in the left breast. In all likelihood, one if not all of the lesions is either cancerous or pre-cancerous. The only way to tell for sure is with an MRI guided breast biopsy. If I decided, however, to go straight with the double mastectomy, that test would not be needed. Hmmm….

Truth be told, I had already decided to do a double mastectomy. There was no question in my mind. If someone has breast cancer in one breast the likelihood that it will appear at some point in the other breast is high enough to warrant concern. Plus, I’m all about symmetry. Why do one without the other? Why live with a very real worry everyday? It just makes common sense, for me, to do both at the same time, especially since the odds are stacked against me.

I was also very inclined to do the reconstruction at the same time. I thought, Why have two major surgeries, if I could only have one? Now, I’m all about making the right decision, at the right time, for the right reason. In fact, it is a philosophy that I try to live by and this situation is no different. So, in my decision making process, I didn’t want to jeopardize any treatment options just because I wanted to consolidate surgeries. So, I was keeping all options open, but hoping that doing the double mastectomy and reconstruction simultaneously was a viable option.

In the meantime, we were referred (by great friends who are incredibly knowledgeable and experienced in this field) to Dr. Armando Giuliano, based at St. John’s in Santa Monica. He is the father of the sentinal node biopsy, which has changed the way breast cancer is treated. He was described by a surgeon friend of ours as being the “best breast surgical oncologist, scholar and gentleman.” Could there be a better recommendation? I don’t think so. In addition to having gravitas in the field, a very good friend of mine from Santa Barbara also had breast cancer and worked with him. And sang his praises.

Working with him felt right. In fact, it felt like we were exactly where we needed to be. That leads me back to the subject of intuition (discussed eons ago, at the beginning of the story). I am a firm believer in intuition. In fact, intuition plays a wonderfully significant role in this entire process.

Dr. Giuliano connected us with a plastic surgeon colleague with whom he works very closely, Dr. Jay Jensen. After our appointment with Dr. Giuliano, (literally, right after) we met with Dr. Jensen. There was an incredible synchronicity and seamlessness to that day: SL. We were told by both surgeons that doing a double mastectomy made perfect sense and is a completely reasonable decision. I am nothing if not reasonable.

NOT doing reconstruction was not given as a viable option. It is better, we were told, to do the reconstruction simultaneously because of the fresh tissue, superior aesthetic and skin preservation.

I asked about the impact of radiation, post-reconstruction (if I have to have it, yet TBD). Dr. Jensen told us that all radiation will render the outcome less desirable and that I will have radiation effects that I won’t like; however, doing reconstruction at the time of the double mastectomy is the much better choice. Hurray! SL.

At the end of that day, we even coordinated calendars and secured a date. I will be in the hospital 2 or 3 days and then home.  I felt so relieved to now have a plan.

My dearest, most wonderful girlfriend from Chicago is taking a week out of her life to be with me/us. She will be my personal nurse advocate in the hospital. I am overwhelmed by her gesture of love. It was just a year and a half ago that I stayed with her in the hospital during her surgery. Crazy. She reminded me the other day that we need to start meeting at spas rather than in hospitals. No kidding. Then she reminded me, again, that: We. Know. How. To. Do. This. (SL)

After setting this plan, I have to say that I am still in an intangible height of emotional bring-it-on-ness.

Our next plan will be to plan a pre-treatment, fueling family vacation.

Planning is bringing the future into the present so that you can do something about it now.

– Alan Lakein

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Comments

  1. Adrienne Krumholz says

    Hi Hollye;This is my 1 year anniversary from being diagnosed with Breast Cancer HER-2 positive.I had a lumpectomy 4 rounds of chemo 6 weeks of radistion and am almost finished with my herceptin 3 week dose for 1 year.Wow I realize I have been through so much I hated losing my hair the most and also chemo brain which I sufferered through terribly.Your blog helped me alot especially the 10 things not to say (all of which were said)to me.The only statement that bothers me is that if you have had breast cancer in one breast chances are you will have a reaccurance in the other breast I feel that is simply not true can you please explain why you believe this to be true.Anyway I am feeling better still in recovery and really hope to make a full recovery and put this entire experience behind me.Thanks so much for your time

    • says

      Dear Adrienne,
      First of all, CONGRATULATIONS on being one year out. This is wonderful, absolutely wonderful! I hope that you take extra special and good care of yourself during recovery. It takes longer than one would think and patiences is the key.
      Thanks for asking your question. I had precancerous lesions in my left breast. I was told that I could either proceed with a double mastectomy or "wait and see." I decided to go ahead with the double mastectomy because it felt proactive, especially with suspicious cells already existing in my left breast.
      I also felt like my body, specifically my breasts duped me once. I didn't want it to have the opportunity to do it again.
      My belief is that each person has to make her own decision and to follow her intuition. This is what my intuition said and I'm glad that I did it.
      Hope this helps. Please let me know if you have any other questions.
      Thank you so much for reading The Silver Pen.
      All my best wishes,
      Hollye

  2. Lynda Jensen says

    Hello Holly, it is funny how fate puts people together. You know my daughter. Last weekend I drove to Santa Barbra to tell her THE NEWS. My diagnosis is promising in some respects and troublesome in others. I had the biopsy after the mamogram and ultrasound. The new was not good. Immediately I went into my 'Survivor" mode or "Warrior" mode – I think I like that word better. Anyway today I had a cardiogram and MRI. I did not know that they stuck a needle like thing in your hand to inject dye. Ouch!! I also took care of my lab work. My surgeon in Napa is great. He spent two and one half hours going through the results of the biopsy and will meet with me on Friday. Surgery is scheduled for Tuesday. I have discussed options with him and an oncologist. The hardest thing that I have had to do is tell my daughter. I know she is worried and I want her to know that I know I can count of her, but that right now there is not a reason to come to Napa to care for me. I have put together a pink binder with all my information in it and I am becoming a very good student! Anyway, Holly, thank your for your blog. I will let you know how my meeting with the surgeon goes on Friday….

    • says

      Dear Lynda, Thank you so much for your note. I'm so sorry to hear your news. UGH. I'm so happy, however, to hear that you are comfortable with your surgeon and that you feel prepared (well, at least as prepared as a person can feel!).

      Telling children about a diagnosis is probably one of the most difficult aspects of this terrible disease. After all, WE are supposed to protect our children, right?!?

      One thing that might be helpful to think about is that helping to care for you (by even just being present) does so much good for the person doing the caring. In other words, allowing people to care for us makes them feel useful and engaged and like they are actively doing something to help.

      Please let me know how it all goes. I'll be thinking about you!
      Best wishes,
      Hollye

  3. Joanne says

    I too, have joined the club to which no one wants to belong, on 11/21/2011, with my diagnosis of invasive ductal carcinoma. We don't get FBC in my family! WTF! I'm only 3 years from retirement, this was a mean turn by fate to my golden years. I am fortunate to have found my lump and get over the denial early enough to spare myself chemo and radiation a SL. I credit reading another story of a club member that found her cancer due to the breast feeling pulled down. Darn, I had that before I felt the lump. My lump presented as a spot the size of the top of a nickel that would not be wished away. It was at 10 o'clock on my right breast, right where my dog bounced off me just a few weeks earlier. Anyway, I'm on Arimidex for 5 years and had a mastectomy on my right breast. Out Out Bad Spot!! I too expect to live into my 90's as my relatives have done. This week I'm planning my reconstruction. Take that FBC! And thanks for giving me a place to vent with other's that may understand the range of emotions that need to be survived.

    • says

      Dear Joanne,
      Thank you so much for sharing your story. Please stay in touch and let us know how your reconstruction goes. I'll be thinking about you!
      Best,
      Hollye

  4. Lette Birn says

    Had my biopsy today and from the reactions of the radiologist (Who also talked and talked up a storm, then went completely silent and haradly could say good bye) and all doctors there is great cause for concern.
    I have a wonderful life, The most amazing husband, great adult kids and grandkids and a job I love. My reaction right now is "F … I don't have time for this!!"
    I am determined to battle whatever comes along and not let it stop me!

    • says

      Thanks so much for your comment, Lette and for sharing your story. I'm so, so happy that you have such a wonderful life! It makes anything manageable! Take good care and please stay in touch!

  5. Tania says

    Thank you so much from a student point of view.

    Putting the patient first is so important and its impossible to understand what people could possibly be going through unless you've experienced the same diagnosis yourself.

    Your writing is empowering, honest and frank and inspiring and I thank you from the bottom of my heart for having such courage and strength to not only fight your way through this but share your story with others publicly.

    You are amazing, and no doubt this blog will help others cope, and others, like, me gain some insight to help support others.

  6. Jeannette DePriest says

    Hollye! This is a wonderful idea! And you are so young to go through FBC. I was 49 when mine was detected and because I have dense breast tissue, I started having mammos at 30. I'm 3 years away from my surgery and doing really well. To everyone: attitude attitude attitude. I only missed work when I had my surgery and the days I had chemo. I am a total advocist for women started their mammos at 40. It can be such a cureable disease.
    Now…why can't I get past your planning page? Blessings! Jeannette

    • says

      Thank you for your comment, Jeannette. I really appreciate it and am so glad to hear that you are doing really well. Wonderful news! All my best wishes for continued good health. Take good care!

  7. Roberta says

    March 2012..I was just diagnosed 3 weeks ago and have had the lumpectomy and going for the sentinel biopsy on Monday. I am definitely in the WTF mode! I have been basically healthy up to now – well except for the arthritis and joint replacements – and my bucket list includes living well into my 90's. I have yet to do the hotair balloon ride, the basking on Costa Rica beaches, the publishing my memoir and other goals…so why does this FBC have to come along now???? I guess it is a message telling me to get off my bum and finish some of my projects. Sure, I am scared, angry, worried and frustrated and this very large frost heave in my personal path to joy….but I have discovered a new, formerly hidden "warrior" part of myself who will not be thwarted.. I am so happy to have discovered this blog and these fabulous ladies who are also great writers and willing to share their journeys. Looking forward to reading more from you all!

    • says

      Dear Roberta,
      Thank you for your note. While I am sorry that you have joined the club to which no one wants to belong, I am happy to welcome you to a warm, strong and supportive group. It sounds as if you are already finding Silver Linings that can seemingly only come with a FBC diagnosis.
      Please stay in touch and let us all know how you do.
      Sending my very best wishes to you!
      Hollye

  8. Margaret says

    Just diagnosed on Tuesday. When my husband and I went to see the surgeon that
    did the biopsy she became defensive when I mentioned that I was going to seek a
    second opinion. It makes sense to us to consult with one of the larger Breast Care
    centers in Chicago. Hope I can feel as confident as you did about
    the professionals that cared for you. Thank you so much for sharing your experiences.

    • says

      Dear Margaret,
      I'm so sorry that you have joined the club – the one to which no one wants to belong, but to which there are so many members! I am so glad to hear that you are going to seek a second opinion. I would run as fast as possible from ANYONE who was defensive about getting a second opinion. As a matter of fact, my Oncologist encouraged me to get another opinion. And just to let you know, the surgeon who did my biopsy and diagnosed me did not do my surgery. The most important thing is that you (and your husband!) are comfortable with the care you are receiving. There are GREAT doctors in Chicago and I am confident that you will indeed find the best care. Please stay in touch and let me know how you do.
      All my best wishes!
      Hollye

  9. says

    I also have a blog since my FBC diagnosis almost one year ago. You write so beautifully, and I went through many of the same emotions and experiences, but we all have a different story. Thank you for sharing. I never wanted to be a member of this club, but am happy to have found sisters out there who understand.

  10. Deborah Windholz says

    I was dx 11/30/2011 with infiltrative ductal carcinoma and they stated it was an aggressive type. It was not in my lymph nodes and all margines were clear. Still waiting for the onco test. Could not do an MRI, it went in backwards and my butt was too big. Still do not have a plan but meet with oncologist on 01/10/2012 and after we find out if I have to have Chemo then I get to scheduale radiation oncologyst for 6 weeks of radiation. After I am done with that I have hormone therapy.
    I go from being angry, silly, weepy, tired, I laugh at your F-bombs. Made my day.

    • says

      Dear Deborah, Thanks so much for your note. Gosh, do I ever know those emotions. Wow. What a roller coaster it all is. Please stay in touch and let us know how your appointment goes next week. Glad you like the F-bombs. Sometimes, they are the only things that will suffice! All my best, Hollye

      • Deborah Windholz says

        Well I start Chemo in 10 to 14 days. I have to have a port put in and I am still not sure of the her2 protein. Doing ok just have been trying to get healthier and now I have to put a chemical in my body that is going to cause so many side effects. I know there are people out there that are so much worse than I but it is still tough sometimes.

        • Kathy says

          I have also ben diagnosed with her2 cancer back in January 2012 since then I have had surgery to remov the cancer cells….. I have had 1 chemo tretment which landed me in the hospital, for a few days. (diareah) was getting dehydrated……….. now it is towards the end of the month and I am losing my hair…… I also ha e good, sad, angry and many more emotions going thru this,,,,,,,, . oh by the way we caught this a a very early stage so I will survive all of this…………… best of luck to everyone

          • says

            So sorry to hear the news, Kathy. The roller coaster of emotions is very, very normal. Please be patient with and take good care of yourself. Sending all of my very best wishes to you. Please stay in touch! Warmly, Hollye

  11. E.B. says

    Just started reading this section of the blog. You remind me a lot of my Mom and her reaction to FBC. Although she was diagnosed at a very late stage, her attitude and manner of facing the situation, I believe, resulted in the Silver Lining of having her with us much, much longer than everyone, including her wonderful team of doctors, expected. She had an amazing appetite and love of life and family. My prayers are with you and your family.

    • says

      Thanks so much for your kind note. I'm so sad to hear about your mom's death, but am happy to hear that she lived longer than anyone expected. That is a wonderful Silver Lining. Thank you so much for reading the blog! Take good care,
      Hollye

  12. Lois Pappas Swift says

    What a wonderful site – Thanks for sharing!

    I was just diagnosed – confirmed biopsy 11/8/2011 – our anniversary – Really? Anyway – have typed five pages of venom – and I want to start a blog – and I do use the "F" bomb quite a bit – this is crap – what is this disease all about – there has to be a common denominator – or as my Dr. calls it – "A Glitch" WTF? We need to share our success stories – have strength for each other – Love to all, Lois

    • Beverly Taylor says

      I found out on feb 14, 2011 that i have inflamortiy breast cancer. i saw a surgon on the 18th and started having test done and end up having chemo first and surgery and then radiation. I decided not to do reconstruction at all. i wear the fake ones and do ok with it. found another lump a couple of weeks ago freaked out again totally but saw the dr the next day and needle bio done on it.