New- DX on 7/19/21

Waves2Stars

I went to Soma, a lingerie store, to be properly fitted for a bra. I used to be the size I am now, but was considerably smaller the last five years. I was on testosterone pellets for mood and menstrual control for 9 months, and my breasts had atrophied quite a bit. I had some dimpling on the inside of my larger breast, but I assumed it was because it was a sad bag at this point! Started putting on weight this year, so wanted new bras. When my breasts were in their correct position, I noticed how full that area looked compare to the rest of the breast. I felt a lump. I even think the sales person was looking right at it. I bought one bra, had one ordered. Saw my period was due in a week. Tried to ignore it until then. It was still there after my period.

My expensive bra arrived by mail. I thought if I opened it before seeing the dr I would be jinxed with cancer. I got in that day to primary care. She said the dimpling was no big deal until she felt the lump. She said right there it was cancer. Went right after for ultrasound and mammogram. They said it was cancer. Had core needle biopsy two days later. The staff gave me the cancer look when they saw what they were dealing with in the ultrasound guided biopsy. I kept hoping it was necrosis. Monday, four days later, my dr gave me office dx, referrals, etc. Wednesday I met my surgeon and got info and time table. Blood draws for genetics. The next morning I left with my family for a ten day road trip. We didn't tell our kids because we didn't want to taint the trip. During the day I'm fine. At night I've silently howled and cried. I wake up angry every morning, well before 5. I'm 47, haven't drank since I was a teen, never smoke, eat pretty well, exercise, use organic when I can, no one in my family has cancer. I can't believe this is happening.

Salamandra

I'm sorry this is happening. No one earns their cancer, it's just bad stuff that happens sometimes.

I hope that the cancer you've got is treatable and that the treatment goes smooth and sticks! Do you know the details of it yet? All cancer feels like it turns your life upside down, but if we're lucky it's more temporary than not. But good health is always temporary in the scheme of things.

Sit out from parts of the vacation if you need to. Your experience matters too. Get the support you can. Hang in there!

Waves2Stars

Hey, we just drove thru the Bronx yesterday, on our way back to PA! All us summer travelers made the toll roads a joy, lol!

The info I have so far looks like yours, only the mass is 1.8 cm. I don’t have HER2 back, yet.

The thing I worry the most about is Tamoxifen. I have a hard time mentally and with my joints being low in hormones. Also the INSOMNIA! I’m afraid my memory will be crap and I’ll be a raging she wolf again! Like how quickly does this hit you? Do your hormones slowly go away over a month, or is it in days? Do you get migraines? My testosterone treatment put me into fake menopause for a couple months, and I had excruciating jaw and joint pain, woke up every 45 minutes. How was it for you? How old are you

wondering44

Hi Waves2Stars!

You are not alone. The challenge you have if front of you today is a lot for you to manage.

I got the dx two days in July before my 45th birthday. I have a great life. I run a successful business. I am one year from graduating from law school (studied just for the degree on my wall). I have an amazing spouse who is supportive. My children are out of the house which makes life a whirlwind of fun. I just did my 3rd jump (skydive) right before I found my lump. I don't smoke. I don't drink. I run twenty-plus miles per week. I do have a Reeses Peanut Butter Cup addiction that I had to give up due to the dx.

I have found a new perspective on life since the dx. It has calmed me and given me reason to smile every day that I wake up. I hear stress is not good for a healthy body. I try to stay calm and positive each day to help get my body right to fight the cancer.

The Tamoxifen read up is terrifying. However, it is a game changer for many women. The MO is a great person to discuss your concerns with. Find other women who have taken the hormone therapy. Each person is different and has a different take on it. It may help to get a perspective on it that you are comfortable with.

The shock that comes with the dx does change with time. Take care of yourself. Get your support crew going to get you through the hard days. Hang in there. You can get through this.

Esther01

Hi Waves2Stars,

I'm so sorry you find yourself here. This forum is the most encouraging, uplifting, supportive place for what you are going through right now. My lump was found the same way in December at age 49. No history of cancer in the family. I was terrified. I had several lymph nodes involved. Right after diagnosis, I went on a vacation with my family, too. My brain was in shock, but walking and looking at the flowers or even just sitting outside and listening to the birds soothed me. I prayed like never before and basically threw myself into the lap of God asking Him to strengthen me for whatever treatment I was going to need. At night I had to listen to ocean waves ("crickets at the ocean" on Youtube is one of my favorites) to quiet my terrified brain. I came home with a lot more peace and a firm resolve to kick cancer to the curb and out of my body.

One thing I am SO glad I did right away... I found a great integrative doctor (IMD) to work alongside my oncology team. While they focused just on my standard of care treatment (most often, chemo, surgery, radiation, hormonal therapy), she got right to work fixing my diet, boosting my immune system, correcting my vitamin imbalances (cancer pts always seem to have LOW Vitamin D and iodine) and beefing up my (clearly poor) cellular health to maximize my chances for survival and make my body as HOSTILE to cancer as possible. What a learning experience in just 6 months. I am way healthier now than before my diagnosis. I finally understand cellular health which I had pretty much ignored.

I know what you mean about tamoxifen. I hated taking it after I read the side effects. Surprisingly, my IMD isn't worried about my taking it and I have no insomnia, joint pain or brain issues from it. I have taken it since Dec. 2020, with only a short break when I had irregular bleeding which turned out to be from high estrogen and low progesterone. I am back on tam now, and taking Prometrium (natural progesterone) to help clear out the irregular bleeding and bring my hormones back into balance.

I don't get insomnia from tam. I use 1-2 mg of melatonin about 20 minutes before bed. I drink a ton of water (half my body weight in lbs in oz, so 110 lb = 55 oz/day) and am eating totally clean now, low carbs, no sugar and very little processed food. I am taking systemic enzymes which is great for joints. Message me if you'd like some info on that. S.E.s break down fibrin, reduce inflammation while you sleep, and even help uncloak the fibrin surrounding the cancer cells and carry away cellular debris.

My IMD says blood type A's need digestive enzymes with every meal. She says type As tend to have less enzymes to help us digest our food and take nutrients from it. This is an important component of recovery and there are tons on the market. I use OrthoDigestzyme from Ortho Molecular with every meal.

I forgot to mention! My M.O. put me on hormonal therapy first (tam + zolodex) for five months, not surgery first. After 5 months of that and a way better diet, plenty of water and the right amounts of vitamins/minerals, the tumor shrank quite a bit and I was ready for surgery which was last month. Next week I start radiation but I'm already prepared with some great strategies for beefing up my immune system from the radiation.

Probably a lot of overwhelming info- I mention all this because while bc is a scary diagnosis, there is a lot that is still under your control. I am praying and pulling for you. I was so upset too at this diagnosis! I am a full time caregiver for a family member and couldn't believe this was happening and that I didn't catch it sooner. I now see it as a special part of my new life because now I am caring for my body more than ever before and my whole family is getting healthier alongside me.

Glad you're posting. Reach out anytime, {hugs to you}

Blessings,

Esther

Esther01

Wondering, your advice is right on!! Congratulations on being in your last year of law school! We share the Reese's peanut butter cup addiction. I haven't had one in a long time..

Blessings, each,

Esther

wondering44

Esther01,

Great advice! I too started taking vitamin D and iodine. My spouse found an eIodine practitioner for me to work with. My GYN started me on vitamin D. She also started me on melatonin and magnesium for sleep support. It is amazing!

I do miss those Reeses…

Keeping you guys in my thoughts for a good recovery,

Kati

Waves2Stars

My old gyn, who rxed me testosterone pellets, had me on ADK, DIM, and iodine, wanted me to try melatonin, too. Now I’m starting to think he knew there was an elevated risk of BC with testosterone…..

Waves2Stars

Thank y’all for all the good information and support. It’s very, very sad to see the relatively younger ages we are getting cancer. My primary care said the rates of breast cancer diagnosis are now close to 1 in 4! I worry for the younger girls growing up. I really am the healthiest person in my extended family, and still. I will keep you ladies’ perspectives in mind

Salamandra

The thing with the tamoxifen is that it's kind of like the pill. Everyone has different responses to different variations of it, and there's no way to know but to try.

You might well be lucky and have no real side effects from day one!

If you do have side effects, you have options:

- give it time and treatment. A lot of the early side effects will dissipate as you adapt, either with or without treatment. I had terrible heartburn. I had to be on super strength Prilosec for a while, but it eased the symptoms and eventually I didn't even need it any more.

- try different brands. Like the pill, some women do better on one while other women do better on another. There is a liquid version too

- try different times of day or configurations for taking it. Some women do better with 2x10 rather than 1x20

- try a lower dose. Some women are able to build up from 5mg to 20. Some women stay at 5 or 10 - this is not backed by evidence yet but it's not contradicted by evidence either and a lot of docs will accept it if the alternative is none at all

- try toremifene (that's what I did - none of the above worked for the fatigue side effect for me and my doc agreed to let me try this other SERM. It is working great for me - barely perceptible side effects, if at all)

- try an AI with ovarian suppression. Although it sounds more drastic, there are premenopausal women who actually do better with this than with the SERM class.

- go off the hormone treatment. This is the most patently risky, but at the end of the day it is right for some of us. The benefit of the hormone treatment is always uncertain - you might not have any cancer cells floating at all, or conversely, they might not be responsive to it. If you've ruled out every way to manage hormone treatment without undue impact on quality of life, it can be sensible to stop it. TBH I would do this in consultation with a therapist/psych possibly in addition to the oncologist, because it can *feel* a bit crazy. But I really think it always needs to be on the table and it can be an extremely reasonable decision.

Basically, yes, it's a drug, yes it has side effects. We hear more about bad side effects here because that's human nature, but many women tolerate it just fine, some with tweaks some without. Finding out what works for you will be part of the life-turning-upside-down process. If you are lucky it will be short. If you are not lucky it will be longer. But it will not go on forever!

Waves2Stars

The BCP analogy is great! Could be true for any medication, but especially ones that add, subtract or sub hormones! I’m going to commit to trying it out knowing I can ask for different brands or formulations. I never knew how bad I wanted to be alive before this week.