My first post-Diagnosed with Breast Cancer April 2023

Stormdiamonds
Stormdiamonds Member Posts: 3 Member
edited August 2023 in Breast Cancer #1

I have been through 3 scares, but this one was the "CHARM" Cancer broke through and not benign. I have peace of mind and not used to reaching out for support whenever I go through medical issues at all. But I promised my Oncologist to reach out to family, colleagues, and here. I am not sure what steps I need to take and what type of support will be needed as the road seems to be more foggy on the recovery side of a Double Masectomy? I appreciate any support in any area that will help guide me. The good news about the bad news is, it is Stage 1-Grade 2, I jumped off the table to hug my Doctor who was not sure how I would take the news...I thought, well, stage 2, 3 or 4 is worse, but this is the best of bad news! I am writing a bit about my busy journey. My surgery is on 8/31/2023.

Support-Words, aid in what to do, or even share your story?

Financially-whacking my poor credit card for mri's, and more....plus, I have insurance.(co-insurance is a kicker)

Recovery- how long, what to do, how to do it, (I know I will have Tyrannosaurus arms) Niece will be here to help. What to expect in the different stages on the recovery end of it.

Any other ideas?

I have paperwork, but right now it looks like a different language to me(maybe a denial sign)

Protein up 2 weeks before surgery-suggestions?

How long have most of you went back to work(remote working -as I can do that and not drive as my team works 3 hours away in another state.

Comments

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member
    #2

    @Stormdiamonds Thank you for posting here. I'm sad for the reason but welcome you into this amazing group of survivors. I want to say at the outset that each and every person here has a unique story and you will need to take in an overwhelming amount of information and make decisions that are best for you and your situation. That said, when I was having to decide between lumpectomy or mastectomy, it helped me to hear from people who made each of those choices. And then even after deciding to do bilateral mastectomy, I had to decide what I wanted for reconstruction.

    So, I'll tell you a bit about my journey so far. Feel free to ask questions. And hopefully others who chose differently will chime in as well.

    I have a terrible family history of breast and ovarian cancer that includes losing my sister to ovarian cancer (she was 46) and my mother to breast cancer 18 months apart. There is a BRCA gene mutation in my family but I did not have it. But still ended up being diagnosed with breast cancer in March at the age of 52. I'm thankful that we caught it early. Initially, I was told stage II by size but stage I by type since estrogen and progesterone receptor positive. The first choice I had to make was lumpectomy and six weeks of radiation or mastectomy and maybe radiation depending on pathology. It was an incredibly difficult decision for me but I chose bilateral mastectomy and my surgery was May 11th. In that surgery, they removed some of my lymph nodes and the Reconstruction Surgeon put in tissue expanders and I will be having DIEP reconstruction in a few months. Pathology came back with clear lymph nodes so I didn't have to do chemo or radiation and started Tamoxifen a month after surgery.

    I was out on disability for six weeks and went back to work about a month ago but I have yet to work a full 40 hours in a week. Partly it's because I still have so many appointments, OT, post-op, and partly because I'm dealing with crushing fatigue. Currently, we think it's from the Tamoxifen.

    I'm glad you are already working out someone to help take care of you and even more glad that you will be able to work from home when you go back to work. This is already pretty long so instead of rambling further, I'll reiterate, please feel free to ask questions!

  • Stormdiamonds
    Stormdiamonds Member Posts: 3 Member
    #3
    https://csn.cancer.org/discussion/comment/1707855#Comment_1707855

    Thank you so much! I had given up on any information or support from the ACS or any cancer groups...I have felt alone dog paddling out here and trying to figure it out with everyone else who has survived by asking questions, reading...but as for the network itself??? Still no one can help direct me. I have given up. Thanks to you, you have given me more insight as i am in the 90 percentile due to the history on my mother's side. All were not survivors. I have chosen to not do the lumpectomy due to my family and their survival rate. I am going all in and will have the DIEP. Thank God I don't have to have Chemo/Radiation at this point until they do the surgery...hopefully it has not gotten worse. Yes, I am lucky to have my niece who is willing to help me. I have no sense of direction of what to ask or anything...I guess I am going to wing it like the fog on the road and pray recovery is easier not knowing....Thanks once again for responding...I was not going to check as no one had said anything, but you gave me a little insight and hope. I will be praying for you and your next surgery to go well. :D

  • LovesPrimes
    LovesPrimes Member Posts: 109 Member
    #4

    So glad my response helped in some small way. I usually check the boards daily but will be traveling soon with little or no access to internet. I’ll be checking on you when I get back. Hugs!!

  • Maudia
    Maudia Member Posts: 3 Member
    #5

    I am hopeful that your doctor has an oncology team that will help you. I had DCIS in 2002 and felt so lucky to have caught it early. In 2022 I was again diagnosed with cancer, this time DCIS in left, Invasive Ductal Carcinoma in right. Left was not hormone receptive, right was 99% hormone receptor...go figure. I am 69 years old and my surgeon ordered a contrast enhanced mammogram prior to surgery, which found the more serious invasive cancer on the right. So I am eternally grateful that my surgeon was thorough. However, my faith in mammograms diminished quite a bit. So I opted for bilateral mastectomy without reconstruction. My sister helped me the first 2 weeks post surgery and though not a nurse, she was fantastic. My niece supported me the day of the surgery and I am grateful because I recall seeing my surgeon post op but can't remember a single thing she told me so my niece was a big help there. My husband was there, too.

    Since surgery I went on Letrozole from 11-22 to 5-23. I had insomnia, hot flashes, joint pains, dryness everywhere, and depression - all of which I attributed to Letrozole. My oncologist took me off it for 30 days to see if my side effects improved, which they did within days. So she switched me to Tamoxifen starting 6-1-23. At first I thought I was doing quite well on it, hot flashes but I've had those off/on since my hysterectomy. Then I started to have these unbelievable sweating issues, my t-shirt would be wet, my skin wet/clammy. Then insomnia which I am still trying to determine if it is a hot flash waking me up or just insomnia (leaning to insomnia). So I will be talking to my oncologist soon about options. She is very open-minded. If I have questions or concerns, I can call my navigator (on the team) and if she can't answer my questions, she gets them to my surgeon, oncologist, social worker - whoever can assist me with an answer. So again, I hope you have a team.

    Read to learn and ask questions, there are no dumb questions. Cancer is a complex disease and knowledge is very helpful in making the best decisions for YOU. Praying for you for best possible outcome.

  • Stormdiamonds
    Stormdiamonds Member Posts: 3 Member
    #6

    Thank you for sharing! I have great surgeons and a hospital. I have my niece and a few friends...which are unable to help much due to work and out of state. I am leaving it in the Lord's hands. :D I know my paperwork was just filled out and hopefully I recover soon and can get back on my feet.

  • holdmybeer
    holdmybeer Member Posts: 3 Member
    #7

    My advice is to go forward with the attitude that nothing will stop you and you can rock this disease. You have the support of your doctors, family, friends and everyone on this forum. Whatever you decide, decide you will come through with flying colors. Best wishes for a speedy and complete recovery .

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