Update in Original Post -BTDT Breast Cancer Edition

[zukeypur]

Thank you for sharing. I'm in the high-risk club. I also have very dense (teeny tiny) breasts. My first mammogram was quite eventful, progressing to a biopsy and a lumpectomy. I had ductile hyperplasia and ended up on tamoxifen for 5 years. I get a yearly mammogram but have deferred the MRI for this year because it is SO. STRESSFUL. You've got me rethinking that now. Prior to this year, I alternated between a 3D mammogram and MRI every 6 months.

My maternal aunt was diagnosed with DCIS about 6 months after my lumpectomy. There is no genetic correlation as far as we know (I've had a cancer panel because of breast hyperplasia and other histories of multiple cancers in my family).

Here are a few thoughts from my experience....

If you ever have to have a biopsy, make sure they give you lidocaine BEFORE they put you in the vice. I watched all of the lidocaine just run onto the floor, and then the biopsy hurt like hell. I feel like this should have been obvious to the physician, but the nurse said "oh, this is how we do all of them"

For those with tiny breasts: a lumpectomy can result in the loss of a significant amount of breast tissue. While mine was only a "lump" it was easily about 25% of my small breasts. Not a huge deal, but I wish I had been more prepared. It's been 6.5 years, and it's still a bit jarring to look at it sometimes. It's easily 1-1.5 cup sizes smaller than the other one.

Tamoxifen side effects can be severe, but I actually felt better on tamoxifen than after I finished. I asked my oncologist if I could get back on it (she said no). I have always had hormone-triggered migraines, and they decreased significantly while I was on tamoxifen. They've come back with a vengeance the past year. Other than that, I didn't really have any significant issues with the tamoxifen.

[essnce629]

Tamoxifen side effects can be severe, but I actually felt better on tamoxifen than after I finished. I asked my oncologist if I could get back on it (she said no). I have always had hormone-triggered migraines, and they decreased significantly while I was on tamoxifen. They've come back with a vengeance the past year. Other than that, I didn't really have any significant issues with the tamoxifen.

This is exactly my friend's experience. She also had horrible migraines that weren't controlled with meds and as soon as she started the tamoxifen they immediately went away. She says she's felt the best she has in years and also asked if she could stay on it indefinitely. So far she's only a year out from starting it, plus a double mastectomy and reconstruction, but hopefully by the time she finishes it after 5 years she'll be old enough to be past natural menopause and her periods and hormonal migraines won't come back. She just turned 50. Her mom had breast cancer at the same young age so she was high risk and already getting regular breast MRIs which caught it super early.

I'm also one with small dense breasts plus a lot of cysts. They also said I should have a 3D mammogram every time. I'm only 41 but have had several mammograms plus ultrasounds for all the cysts plus a biopsy for one solid lump that was benign. My issue right now is figuring out if I should go in every time I feel a new lump that is most likely a cyst? I had a mammogram and ultrasound in May for 2 lumps that were cysts and now have new lumps that are probably cysts plus the other 2 cysts are still there! And then I'm forgetting which ones are new and which ones have already been looked at!

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[zukeypur]

I'm also one with small dense breasts plus a lot of cysts. They also said I should have a 3D mammogram every time. I'm only 41 but have had several mammograms plus ultrasounds for all the cysts plus a biopsy for one solid lump that was benign. My issue right now is figuring out if I should go in every time I feel a new lump that is most likely a cyst? I had a mammogram and ultrasound in May for 2 lumps that were cysts and now have new lumps that are probably cysts plus the other 2 cysts are still there! And then I'm forgetting which ones are new and which ones have already been looked at!

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I have noticed that I am getting painful nodules that might coincide with my cycle. I have a mirena, so I really have no idea when I ovulate. I happened to have one when I went in for my last exam with the breast surgeon, and she didn't think it was concerning. If I notice something now, I monitor it for a couple of weeks to see if it persists or goes away. So far, they have all gone away after a week or two.

[essnce629]

I have noticed that I am getting painful nodules that might coincide with my cycle. I have a mirena, so I really have no idea when I ovulate. I happened to have one when I went in for my last exam with the breast surgeon, and she didn't think it was concerning. If I notice something now, I monitor it for a couple of weeks to see if it persists or goes away. So far, they have all gone away after a week or two.

The issue is mine don't really go away for a really long time. Like the 2 that were checked out in May are still there and I had found them a few months prior. When I was there in May they said I could come back in and get them drained if they ever get too big or bother me, but they really don't cause any issues. They're about the size of champagne grapes, but not painful or anything.

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[KpbS]

Indianamom2 thank you for sharing and I hope all continues to go well!

[Indianamom2]

"Tamoxifen side effects can be severe, but I actually felt better on tamoxifen than after I finished. I asked my oncologist if I could get back on it (she said no). I have always had hormone-triggered migraines, and they decreased significantly while I was on tamoxifen. They've come back with a vengeance the past year. Other than that, I didn't really have any significant issues with the tamoxifen."

I hope this is my experience (well not the migraines coming back with a vengeance - I've finally found a combo that works for me!) I had a partial hysterectomy two+ years ago (still have the ovaries) so I have no idea when menopause will hit for me. My mom also had a hysterectomy so no help there either. I'll be curious to see if the Tamoxifen ends up being not so bad. My mom took it with very few side effects for 5 years, so I'm hopeful.

"For those with tiny breasts: a lumpectomy can result in the loss of a significant amount of breast tissue. While mine was only a "lump" it was easily about 25% of my small breasts. Not a huge deal, but I wish I had been more prepared. It's been 6.5 years, and it's still a bit jarring to look at it sometimes. It's easily 1-1.5 cup sizes smaller than the other one."

This is what I think would be my scenario if I opted for the lumpectomy. i have a couple separate spots (at least they think they are separate) and one is extremely close to the nipple, so I know it has to go. Paired with the right breast that is full of cysts, I could see a long and frustrating future of biopsies and worry, so I opted for the double mastectomy with reconstruction. At least what I end up with will be as matched as the plastic surgeon can make them this way.

[LD92599]

I just want to update my saga in this thread - I ended up having my exchange surgery on 12/16 - to implants. Last week on 1/3 at the end of the day I started with chills. 1/4 I woke up, feeling clammy but no fever (3 separate types of thermometers). Noticed the left breast was red. VERY red. But not hot. Called the plastic surgeon and they said to come in. Started antibiotics later that day. The next day, Thursday...I called their office the second they opened and asked to come in again - it red and my left side hurt when I'd put my arm down against my torso. My regular PS was in on Thursday and she said after the fact...when she saw me, she just knew something was wrong. She could see it in my face/eyes because I'm very go with the flow, I don't complain and I was IN.PAIN. She drained quite a bit of fluid and booked me for the OR for Friday AM and we would make a game time decision Friday AM. Well.....I lost the implant. I now have a huge indent on the left side....along w/ an implant on the right side. We have a cruise in 8 weeks and crap, what do I wear!!?!?!?!? I won't have a prosthetic in time. Once I'm healed, I need to get to Nordstrom for bras etc......not sure what the next step will be, I just need to heal and lose weight to feel better.

Well 2023 is off to a great start (oh, and the entire family had Covid over Christmas).

[echoesofspring]

oh LD92599 I'm so sorry! That sounds really painful and disappointing after all you've been through with treatment and recovering from surgery. Lots of

[georgiegirl]

Wow. That sounds awful. I’m so sorry.

[Kindra178]

I am so sorry about this most recent update. Hopefully you begin to feel better.


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