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Topic: Supporting each other through our less common BC Journey

Forum: Less Common Types of Breast Cancer — Meet others with less common forms of breast cancer, such as Medullary carcinoma, Inflammatory breast cancers, Mucinous carcinoma (colloid carcinoma), Paget's disease, Papillary carcinoma, Phyllodes tumor, Tubular carcinomas, Metaplastic tumors, Adenoid cystic carcinomas and Angiosarcoma.

Posted on: Nov 16, 2017 12:08AM

sm627 wrote:

Dear Less Common Breast Cancer Sisters,

I want to send you all lots of HUGS and LOVE during this difficult time in your lives. I know that we all have our own very special tumors that our breasts/estrogen gave us that we did not ask for. I wanted to start this thread so all of us can come together and help support one another through this new world we have entered.

We can talk openly about our feelings, challenges, successes and what we have learned from this experience.

I would also like to take our minds off of our breast issues and talk about what we like to do for fun!

My name is Sara I am 33 years old and this past May I was dx with a Borderline Phyllodes tumor (right breast) that was 17cm. When my BS told me I would have to have a mastectomy I went into shock and my emotional roller coaster started. The hardest part for me was the thought of losing my breast, and I spent many nights crying myself to sleep. But I think in a way it helped me feel better because after the tears stopped I felt calmer and that things were going to be aright. Most of the feelings I have had along this journey have been scared out of my mind, sadness, anger and the feeling of why me. Finding information about Phyllodes tumors was difficult as first since they are so rear, but the most useful/easy to understand information I found was on breastcancer.org.

The good parts have been that my surgery went well and I had one of the best BS in my area that I trusted completely. The funny part is my birthday was in June and I thought I would have a breast cancer free day just from not thinking about it, but no my BS office called to schedule my appointment for surgery and my follow up appointment as well Happy Birthday to me! LOL.

What I have learned from this whole experience is to first listen to your body when things aren't looking or feeling right and get help early. Remember that life is short, so enjoy every moment while you are still here. Allow yourself to express all kinds of feelings you have and be kind to yourself. Even though it has been almost 5 months since my mastectomy I still have to remind myself not to over do it, and remember that I am still healing emotionally and physically. Thank your medical team for all they have done for you they have given you the greatest gift you could ever receive your life. Tell the people that you care about the most in life how much you love and appreciate them.

Okay fun time! What I love to do is art paintings, drawing or anything that allows me to think outside of the box creativity. I also enjoy spending time with my cat and family/friends. I teach preschool children and one thing I enjoy the most of about working with them is seeing all the different art projects they create on their own.

Thank you all for taking the time to read this. I look forward to meeting more of my less common BC sisters and supporting you in anyway I can.

Hugs and Love to all,

Sara


DX 5/30/2017 17cm Borderline Phyllodes Tumor

Surgery 6/27/2017 Mastectomy(right)

Hormonal Therapy 9/25/2017 Tamoxifen






Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Nov 18, 2017 03:57PM Mandycat wrote:

I am 59 years old. I was misdiagnosed a few times but ended up having pleomorphic LCIS with a small area of microinvasion. I had a lumpectomy and radiation. I could not tolerate the anastrozole so I am going without. It was also hard for me to find information which made it hard to make decisions. But I'm happy with the decisions I made. I feel the same way you do about life. I'm trying not to waste any days and to enjoy each one even when I'm working. I work at a hospital rounding on patients. Some times my patients have breast cancer. It's a little hard but I'm doing well with it.

I'm making lots of fun plans for each week. Planning to get married next summer and to go Europe. I want to write books and short stories. I love movies. I have 2 grandchildren boys. I try not to think about what is out of my control. I think painting would be fun too.

My stepmother also has breast cancer and is still going through treatments. I have been supportive of her. I'm going to learn to make something called knotted knocker

Dx 4/11/2017, Right, <1cm, Stage IA, Grade 2, ER+/PR- Surgery 5/1/2017 Lumpectomy Hormonal Therapy Arimidex (anastrozole)
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Nov 18, 2017 11:23PM sm627 wrote:

Hi Mandycat,

Thank you so much for sharing your story. You have inspired to start doing something fun for myself each week and not thinking about what you have no control over. I need to work on that myself the not thinking so much about all the what ifs. What fun things have you been doing? Congratulations on getting married next summer. So nice you have something to look forward too. What kind of stories are you thinking of writing

How is it for your working with your patients that are also going through breast cancer? Do you share your experience with them or keep it professional. Glad you are able to help support your stepmother through her BC treatment. Sorry that you both have had to go through this around the same time. What you have made your first knotted knocker can you post it? I would be interested in seeing your creation.

Wishing you all the best! I am glad you are able to live your life without taking Hormonal therapy drugs. Keep on enjoying life.

Hugs,

Sara


DX 5/30/2017 17cm Borderline Phyllodes Tumor

Surgery 6/27/2017 Mastectomy(right)

Hormonal Therapy 9/25/2017 Tamoxifen
Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Dec 31, 2017 06:41AM Mandycat wrote:

hi Sara

Sorry I have not been on here for awhile. I have been enjoying the holidays. Most of the fun things I have been doing involved decorating and visiting relatives. I also watch a lot of movies and I buy things I have always wanted. Recently bought a beautiful Tiffany necklace off eBay for about $350. It has onyx beads and pearls. I'm going to have a great Gatsby type wedding. I do sometimes share my cancer experiences with patients if it seems appropriate. Sometimes to cheer them up and let them know there is life on the other side. I only took off about 3 days during the whole experience.otherwise worked through it. I see a lot of unsung heros at the hospital. Very brave staff who are still treating patients though they are very ill themselves. My stepmother just finished treatment. I hope she can recover quickly. I bought her a necklace too. An enameled pink breast cancer ribbon with a few diamonds. It's her pink badge of courage.

Dx 4/11/2017, Right, <1cm, Stage IA, Grade 2, ER+/PR- Surgery 5/1/2017 Lumpectomy Hormonal Therapy Arimidex (anastrozole)
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Dec 31, 2017 10:02PM sm627 wrote:

Hi MandyCat,

Great to hear from you glad that things are going so well for you. I totally understand about the holidays keeping busy. That is wonderful news that your stepmother is done with her BC treatment. She must have really appreciated the Tiffany necklace with bc ribbon how thoughtful. The Great Gatsby wedding sound amazing and so festive. Wishing you all the best with the wedding and life too.

I admire you and all the wonderful people that work in hospitals that help people heal from illness. You have a special kind of caring heart to help others even when you yourself are not feeling your best. Thank you for your dedication and love you give all of your patients. After my mastectomy, one of my nurses shared her own cancer story with me, and I felt better after hearing her story that things would get better with time.

I hope you and your family have a happy and much healthier 2018.

Love and Hugs to all,

Sara

Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Jan 1, 2018 03:56AM Meow13 wrote:

The people that helped the most were people that were further down the road then I was.

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Jan 2, 2018 05:55PM sm627 wrote:

Hi Meow13,

I too feel the same way you do the greatest support has been from others that have taken this journey before us. They all provide the advice and emotional support we need as we start to adjust to living our "new normal."


Wishing you all the best and sending you lots of positive thoughts.

Hugs and Love,

Sara

Diagnosed at 32 years old. DX 5/30/2017 Borderline Phyllodes Tumor 17cm. Surgery 6/27/2017 Mastectomy(right). Hormonal Therapy 9/25/2017 Tamoxifen
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Jan 6, 2018 12:20AM Mandycat wrote:

Thank you Sara for the good wishes. This organization helped me a lot when I was starting out and needed answers. Still helps when I am just wanting to talk with someone who has been there.

Dx 4/11/2017, Right, <1cm, Stage IA, Grade 2, ER+/PR- Surgery 5/1/2017 Lumpectomy Hormonal Therapy Arimidex (anastrozole)

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