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Breast Cancer Survivor

Breast Cancer Survivor

Posted by CDKam on Dec 7, 2019 12:32 pm

I joined Cancer Connection last week and have already commented in a couple of forums, so it’s probably time to introduce myself! I’m 59 and was diagnosed with Stage 3, HER2+, estrogen/ progesterone negative cancer in my left breast in the May 2015. The cancer was aggressive and my treatment included a mastectomy, all my lymph nodes removed from my left arm, chemo, radiation, and the adjunct drug Herceptin for a year which was administered through the same port as my chemo. I describe my cancer treatment as “the full meal deal”. After I finished my active treatment in August 2016, my oncologist said that there was a high chance of reoccurrence and if the cancer metastasized it would be ”incurable”, but if I had no reoccurrence in the next five years, she would consider the cancer ”cured”. These parting words really upset me for a long time because they seemed like a death sentence, but the more I learn about breast cancer and the more I meet women living full, happy lives with a Stage 4 diagnosis, the less my anxiety about a reoccurrence becomes. That said, there will definitely be a celebration in our family when August 2021 rolls around!!
Once my treatment was completed, I chose to have a prophylactic mastectomy to my right breast. For me personally, living with the asymmetry of no breast and one large breast was too difficult. I began the reconstruction process in December of 2017 and had the final surgery in February 2018. The freedom of not having to wear a bra has been great! I have fibromyalgia and bra straps have always hurt my shoulders and caused pain.
I have had complications from the various forms of treatment I received. I was diagnosed a couple of years ago with radiation induced pulmonary fibrosis; however, it is a mild case and really only bothers me when I am exposed to smoke. I have had a half dozen fainting spells in the last year and a half which led to me being referred to a rapid access cardio clinic. The electrical system of my heart seems to have changed since pre-cancer with frequent extra beats and tachycardia. From my reading and discussions with other survivors of left breast cancer, I believe the chemo, Herceptin or radiation could have affected my heart, but this is not something a clinical cardiologist I have seen is willing to diagnose. The chemo worsened the neuropathy I already felt in my hands and feet from my fibro. Finally, the radiation damaged the skin under my armpit and on my left breast, so I have been having recurring episodes of cellulitis in this breast due to a small hole in the scar tissue. The last episode of cellulitis infection was really bad, and landed me in the hospital, so I am contemplating some type of reconstruction to my reconstruction. I have been referred to a different plastic surgeon, so we’ll see what the new year brings.
Cancer has made me realize that each day must be lived to the fullest, and even with the complications, I am living a happy life. I have a wonderful supportive husband, two great kids and their spouses, and two precious granddaughters who have both been born since my cancer diagnosis. I had to retire early from my 30+ year career because of the cancer and fibromyalgia, but have found personal satisfaction through volunteer work in the breast cancer community. I dragon-boat with an amazing group of women and find physical and emotional peace through yoga.
Looking forward to connecting with those who have been through similar experiences.

Re: Breast Cancer Survivor

Posted by Wendy Tea on Dec 7, 2019 1:57 pm

CDKam‍ , thank you for contributing to this site and sharing your complex story. I know you will have meaningful comments for others because of what you have experienced.

August 2021. You are on the countdown now. I am with you all the way!

Please stay in touch.
Wendy Tea 
I am a survivor. Wendy Tea

Re: Breast Cancer Survivor

Posted by ashcon on Dec 7, 2019 3:01 pm

Hi CDKam‍ 

I'm so glad you joined, and shared your remarkable story.  Question:  What prompted you to join now, versus (say) when you were going through treatment?

I was just perusing the site with no intention to post anything today (been busy with xmas baking and cooking), but I could not pass up on responding to your post.  Our journeys are so similar in many ways (but I was stage 3, triple negative, right breast in 2017).  After treatments were done, my oncologist said she was more worried about the cancer metastasizing than recurring. This knocked the wind out of me for awhile. Until I heeded the advice of so many on this site who say, "why waste a perfectly good day worrying about something which has not happened - and may not ever happen?"
I had a prophylactic double mastectomy, but (unlike you) I opted for no reconstruction.  Yup, kinda liking the new me.  I feel like a sleek, fast gazelle, prancing gracefully through life now!
I'm sorry to hear of the residual side effects you have been left with, (I have mild neuropathy and lymphedema in R arm), but as you say, it really hasn't slowed me down, and I discovered new found fulfillment through volunteering in the cancer community and (yes!) dragon boating as well!
Congratulations on having grandchildren come into your life, and for having the gift of life yourself, to enjoy those grandkids.  I don't have any grandkids yet, but my eldest daughter just got married this year, so it may just be a matter of time!

Life is good my friend, and this community is better for having you here to share your story, experience, and positive outlook.
---- "Nothing ever becomes real till it is experienced." ----

Re: Breast Cancer Survivor

Posted by CDKam on Dec 7, 2019 3:33 pm

@ ashcon‍ - Thank you for your warm welcome and yes our journeys do sound similar. Good for you for being comfortable with the flat look. If I thought explanting my implants would solve my issues with cellulitis, I might be willing to go there; however, my first round with cellulitis was even before the implants went in! My skin is just tissue paper thin due to the radiation with a small hole in the scar tissue that becomes easily infected. My current PS says that the radiation damage will just get weaker over time, so he has referred me to a PS who does grafts with healthy skin from elsewhere on your body. Don’t even know if I am a candidate for this type of procedure yet. I have been very happy with the healing and look of the implant in my right breast. And you’re correct in using the term metastasizing rather than reoccurring, since breast cancer is more likely to spread to another part of the body than reoccur in the breast (though I do know women this has happened to).
As to why I just joined the community now, that’s an interesting question. First, I felt pretty well supported through the first year of my journey because of my ongoing treatment at the cancer centres I attended. Second, I joined my dragon boat team before my Herceptin treatment was done and prior to reconstruction, so those amazing ladies became my friends and support system. Finally, I just finished the CCS peer facilitator training last weekend and just learned about this wonderful online community!

Re: Breast Cancer Survivor

Posted by CDKam on Dec 7, 2019 4:05 pm

Wendy Tea‍ Yes, that milestone 5 year mark is getting closer and it will be celebrated; however, the more I learn about breast cancer, the more I believe you need to live in the present and not worry about the dates doctors sometimes give. I know women whose breast cancer did not metastasize until 10 years after their initial diagnosis, and others who were diagnosed with mets and given a short time left on this earth, yet they are still happily thriving and living a great life years later! One never knows with this disease, that’s for sure.

Re: Breast Cancer Survivor

Posted by ashcon on Dec 7, 2019 4:27 pm

CDKam‍ ,
Congratulatuons on finishing the Peer Facilitator Training. The in-person peer support groups (which is what I assume you are referring to?) are such a valuable resource for our communities across the country. 
I didn't take advantage of any formal in-person support groups in my community. I came straight here after talking with a Cancer Information Specialist, and have felt very supported! 
And, yes, my dragon boat teammates are a fantastic support network. 
I'm glad you found us here. 

Good luck with the cellulitis  I hope you are eligible for the surgery that will give you some relief. 
---- "Nothing ever becomes real till it is experienced." ----

Re: Breast Cancer Survivor

Posted by CDKam on Dec 7, 2019 5:15 pm

ashcon‍ Yes, we have an in-person breast cancer support group in our community that was started up by two peer facilitators a couple of years ago. It meets once a month. They were wanting a third facilitator in the event of illness, travel, family commitments, etc., and I volunteered to do the training. It was a wonderful, empowering weekend to say the least!

Re: Breast Cancer Survivor

Posted by Mammabear on Dec 9, 2019 1:32 pm

I don't want to be debby downer but my HER2+ came back 4 months shy of my 5 year mark. I was stage 1 at diagnosis Christmas Eve 2014. I was considered cured after 6 months of chemo and a month of radiation. But some HER2+ cancers are herceptin resistant so be diligent with your check ups and if you are feeling off (I was tired but no other symptoms). My liver was failing when they found my cancer had returned mid Aug 2019. On Friday I had chemo #14 for cancer 2.0 and hopefully only one more after Christmas to put me into remission. They say they can keep those of us with MBC (metastatic breast cancer) in remission for a long time but they also don't know why some HER2+ are herceptin resistant with more research being done in this area. I will be on Herceptin and Pertuzamab for life now (monthly). I don't know what follow up looks like yet but I will be diligent with how I am feeling. 

Re: Breast Cancer Survivor

Posted by ashcon on Dec 9, 2019 2:49 pm

Hi Mammabear‍ 
I'm sorry to hear that your cancer came back - and just shy of that magic 5yr mark.  Darn cancer.
Your story hits a nerve.  I was stage 3 triple negative.  So no post-treatment meds for me, like Herceptin.  Just a whole lot of crossing fingers.  I'm feeling tired lately, so will be sure to ask my Nurse Practitioner when I see her in January.
Good luck with your ongoing treatments and with your next (hopefully final) chemo!
---- "Nothing ever becomes real till it is experienced." ----

Re: Breast Cancer Survivor

Posted by Treepeo on Dec 9, 2019 8:55 pm

Hi Mamabear‍,

I just wanted to let you know that one of my sisters has been on Herceptin for the last 19 years and she is still going strong.  She credits the Herceptin for keeping her tumours at bay.  But Herceptin is hard on the heart so you have to beware as well.  Keep them posted about any problems you may encounter as soon as you can.  They need to know.

Re: Breast Cancer Survivor

Posted by CDKam on Dec 9, 2019 10:22 pm

Hi Mammabear‍ 
I don’t believe you are being a “Debby Downer” at all. You are simply stating your truth about your experience with cancer and that is what this forum is for. I’m sorry your breast cancer has returned and imagine you must be having a lot of negative feelings right now about how it has metastasized. It’s a fear I certainly have, especially since my initial cancer was so aggressive. Good luck with the Herceptin treatment. I know it can be hard on the body, especially the heart; however, it has also been a life-saver for so many women. And you are so right that we must be advocates for our own health as we navigate our way through the medical system. It’s so important to listen to our own bodies and seek out help when we don’t feel well, while still trying not to worry about every ache and pain. It’s a delicate balance for sure! Please take care of yourself.

Re: Breast Cancer Survivor

Posted by Essjay on Dec 10, 2019 7:33 am

Hi Mammabear‍ im sorry for your second diagnosis. It's a situation we all dread. Please don't feel you are ’debby downer’, it's just what is happening to you, and it happens to others. 
I was discussing with a colleague who recently had surgery for prostate cancer yesterday about how we have to get on with our lives, but live with the shadow of the possibility of a return. We have to be positive but watchful, and it's hard.
Good luck with your treatment xx
Triple Negative Breast Cancer survivor since July 2018

Re: Breast Cancer Survivor

Posted by Mammabear on Dec 10, 2019 2:23 pm

Thanks everyone for the encouraging replies to my post. 19 years on herceptin and in remission gives me great hope. I will also be getting the new drug pertuzamab with herceptin for life and hopefully that life will be a very long time and who knows.... perhaps a cure will be found. As cancer survivors we all have good and bad days. I had a 6 hour chemo last Friday so this is not my good week. When we are feeling bad our minds circle the drain. I appreciate every one of you and your positive thoughts and encouragement.