August 2017 Surgery group follow-up 3 years!

beach2beach

Hi,

It's almost 3 years for us. Checking in and seeing how everyone is doing. I hope well. These have certainly been some crazy months that we have gone through with Covid. I still feel some issues even after only having sentinel nodes taken out. My right side, which happens to be the cancer side, swells quicker, especially during all this heat. Still on the Tamoxifen and last blood work in June shows still going through menopause. Aches and pains abound, but try to put them on the back burner.

I find this time every year my anxiety goes up tremendously. The date of diagnosis and surgery is burned into my brain.

I hope to hear from you!

MarilynIllinois

HI Beach2beach,

Nice to hear from you too! I know what you mean about memories from this time of year. My iPhone photos gives me 3 year old photos and it does bring back memories. I certainly remember with gratitude all the helpful support from our group!

I am doing fine. My mammograms on the left side have been ok. This past year I had an ultrasound on my gynecologist's recommendation and it was fine too. I had 3 lymph nodes removed for the sentinel node biopsy and the scar tissue reminds me whenever I stretch my arms behind my back.

Yes, the pandemic is, hopefully only a once in a lifetime experience. We are being careful. I feel so sorry for those who have lost their lives. And so grateful for the doctors, nurses and scientists.

Take care, Marilyn

beach2beach

Hi Marilyn,

So nice to hear from you! I'm glad you are doing well... Yes every time you lift up the arms..those scars are a constant reminder. I may sometimes not think about it, but I always see it.

I feel especially for those going through it during the pandemic, how lonely it feels when you can have people around you, forget about it when you have to go on your own because you can't have someone with you. During the times you really need comfort and support.

This also shows how we began to live our lives again after the dx and surgery. Check in with you all again in August!

Mavericksmom

beach2beach, sorry, I don't really fit into the category for this thread but just curious (not judging) why you chose double mastectomy for a stage 1 grade 1 breast cancer?

From my experience, it was probably a good call, but as said, I am more curious and definitely not being judgmental!

I will have my 2 1/2 year follow up at a cancer hospital in May. The hospital is about an hour from my house and I always need to take a day off work to go there. I was only allowed to have a single mastectomy (actually the treatment recommended) because they refuse to take off a non-cancerous breast unless one has the BRCA gene defects. I have pretty much decided that will be my last follow up at the cancer hospital as I feel perfectly comfortable having a uni-mammogram done at my local hospital where I had previously gotten my mammograms. That is the hospital women's center where I was diagnosed both times. I have zero fear of ever getting breast cancer again, both cancers were in the same breast & extensive genetic testing was all negative. I realized that I can be just as healthy going for a mammogram locally and making life easier on myself. Since my May appointments are for uni mammogram, uni US and visit with an oncology NP, and was made at my last follow up visit, I am going to follow through with that. But, I will tell her that is my last visit and request reports and films from all tests I had done there so I have copies. I know all radiologists like to have older films to compare new ones to. I haven't seen a doctor from that hospital since a month after my surgery, I only see a NP now. Come to think about it, the only doctor I ever see is my cardiologist, all the others including other specialists and my primary care "doctor" are NP's.

beach2beach

Hi Mavericksmom,

I would definitely go where you feel comfortable. I always stuck with the same place that made me comfortable. As for my decision most, if not all, was based on that my sister had breast cancer at 48. I always thought if it happened to me I would just take them off. I also had what I would say was a busy left boob. Cysts, fibroadenomas, etc. So when I found out I had cancer in my right breast, I just figured at some point the left would catch up. I had gone for my mammos/sonos even for a while annual breast mri until insurance did not think I was high risk anymore with my sister having had it. (I am 6yrs younger than my sister) Well at age 51 I was diagnosed. My surgeon left the decision up to me. She told me I could do a lumpectomy and radiation (chemo at that point was not known). I just wanted them off. If I would have chosen a lumpectomy my already tiny boobs would have been half gone and I did not want to go through the anxiety of increased surveillance. I'd always feel like the other shoe would be about to drop. I honestly still do to some extent. I felt like my boobs had betrayed me and that I was doing what I thought was the most I could do. My surgeon was ok with my decision and suggested I do implants or reconstructive surgery. I was not even thinking of that at that time. I ultimately wound up going direct to implants and after surgery and the OncotypeDx I found out no chemo.

I've never regretted my choice. Was a very personal decision to me as it is for everyone. All my genetic testing came back negative. So no BRCA or any other time of mutation found. Coincidence that both of us got cancer? Maybe. Maybe not. No one else in our family line do we know of that had breast cancer.

Glad you are doing well!

Mavericksmom

beach2beach, thank you! I agree with you 100% and wish I had been able to have both breasts removed! Leave it to me to pick the only cancer hospital in Philadelphia unwilling to remove both breasts! By the time I found out their policy, I had already transferred my records etc and was still in shock.

We have a lot in common, immediate family history. I was the first to be diagnosed, I was 49. My mother was diagnosed about two months later, she was 83. A year to the day I had my biopsy, my sister had one and was diagnosed with IDC, she was 59. Soon afterwards she found out she had non hodgkins lymphoma too. Sadly she passed from a third blood cancer she got from all the radiation treatments for the other two. She was 66. In Dec 2018 I was diagnosed with ILC. Four months later a second sister was diagnosed with IDC. So, mom and three of four daughters. No genetic defects. Why? Who knows. My mom and second sister could be explained by age, 83 and 72 at diagnosis. But me ( pre-menopausal) and my other sister who was 59????

The first year or so after my last surgery, mastectomy with DIEP reconstruction, I was paranoid. Now, helped by my fear of Covid (I work in a middle school), I honestly have no fear of getting cancer again, at least not breast cancer.

I REALLY wish I had a double mastectomy but no way am I having it done now. I already went through so much suffering from the mastectomy and reconstruction that the thought of a doctor doing surgery on me again puts me in full panic mode!

For what it’s worth, you definitely made the right call! Thank you again for telling me your reasons, I really appreciate it!

beach2beach

Hi,

It's almost the end of August here and I am hoping all our August 2017 surgery friends are doing well. Looks like it will be quite a while with the masks but I hope everyone has gotten mostly back to living life!

xo