ER-, PR-, Her2+ Roll call
Comments
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@beekaycro24 that can't be detected on an ultrasound... It's impossible to see; there must have been very few cells, and cells are microscopic, so they can't be seen in exams like MRI, ultrasound, etc. Only through microscopic analysis. Don't worry, it didn't spread quickly; they must have already been there. I don't believe you'll have to take medication for life. At this moment, I believe you no longer have cancer cells in your body, but you're still going to do radiation and Kadcyla, which would eliminate anything that might have remained.
But your attitude is admirable! There are many women living for many years even in stage 4, but that's not your case. I believe you are already cured and that now you're just completing the rest of the treatments to ensure that if any cell may have escaped, it will be destroyed. It's the same for all of us!
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Yes. That is the reason why it used to be so nasty. It grows almost as fast as a loaf of yeast bread. (exaggeration, but you get the drift)
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@beekaycro24 Yahoo for clean margins!!! Love your determination and perspective. Let us know what the language about extranodal extensions mean when you find out. I think it sounds like more good news.
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Uuurgggg so apparently my post surgery pathology report came out late last night, but because it came out late they didn’t discuss it in the board meeting (which is on Tuesdays). So I now have to wait until next Wednesday for the results 🫠
So frustrating 😡
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@jessybessy That is frustrating! I have access to my medical records via MyChart, online or through an app. Test results are automatically sent to MyChart as soon as they're completed and I can see them even before the doctor dodoes, which is why I'm always Googling…lol. I think if it was something very concerning, they would at least give you a heads up? Praying for calmness and good results for you!
Speaking of test results, my doctor messaged me through MyChart yesterday. He said the remaining tumor is out and two of three lymph nodes removed had trace amounts of cancer. Then said he's looking forward to seeing me at my follow-up appointment next week. I'm so happy I didn't get a phone call (which is what happens if it's something serious).
I hope everyone is continuing to do well!
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Thanks lovely. Yeah my husband said that - he was like look, if they were that concerned about it they would be fast tracking it and calling you, etc etc. So I guess the fact that they feel comfortable enough to table the discussion for next week is fairly comforting.
And yes had heard about MyChart etc, I think there is something similar at my hospital but I think they only upload blood results etc. To be honest, I don't want to be looking at results without a doctor taking me through it as I will just freak myself out even more lol.
Yay for your tumour being out! Were your lymph nodes macromets?
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Hey all. I've been MIA for a bit. My dad passed away 2/12 (which was mine and hubbies anniversary :( ) While no a surprise totally, it just happened a bit quicker than anticipated. He was such a sweet man and wonderful Dad. He was 88 as of Jan 11th. So he lived a good life. Hard worker and kind. He will be missed but so happy that he is with his Lord and Savior now and happy once again. He despised not being able to take care of himself. It's just such a bittersweet time for me right now. Both of my boys got to come home. Dad was so proud of them.
Trying to catch up on everyone!! @catarina_fm interesting you are admitted for radiation!! How many treatments do you receive? Glad it's going ok! My skin is still discolored, but I never blistered thank goodness. I honestly think aloe vera helped me the most. Just the stuff you use after a sunburn.
@jessybessy praying your results are awesome!!!
I had to delay my Phesgo last week and got it Thursday. I really think I have muscle aches and cramps as an SE. Anyone else notice this who get the shot in the thigh muscle?
I'm also having swelling in my surgical breast, which does have the pretty big seroma. I'm thinking of asking to go back to physical therapy for my lymph system.
On the port issue, the antibiotic seemed to clear up the neck/shoulder pain and swelling. MO said everything looks good. They flushed the port and did a blood draw. She filled the first tube of blood no problem, but it did seem to slow down. She had me deep breath. She said that happens sometimes if you are dehydrated and I did have a stomach bug the day before. No pain or swelling now so hope all is well with it. She calculated my time frame for Phesgo and it will go through mid May. She is scheduling a mammo at that time which is the first "test" since pathology. With the exception of the ultrasound done on the left breast and axillary area when I felt the seroma. I had hoped for a PET or at least a chest MRI. Just to make me feel better about spread.
Love and hugs to all and praying for everyone and whatever stage of your journey you are at!
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@grammie2 I am so sorry for your loss. My dad just turned 88 this week and has been hospitalized three times since November, it is so hard to see them get to this stage. Sending prayers for peace your way.
As for cramps, etc I have been having them from I guess the herceptin or perjeta. Out of the blue. In various parts of my body (mostly feet, ribs and legs) I am hoping they will subside before too long.
As for breast pain, I have been in PT because I have am extremely tender in my armpit, breast and under my breast. My radiation oncologist said she believes I have a nerve caught up in scar tissue. I am uncomfortable when I raise my arm all the way across to my nipple….its great. I hope this also goes away some day.
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Hello everyone!
@grammie2I'm so sorry for your loss, especially on your birthdays. Even when it's expected, it's always hard... I'm sure they had a fulfilling and happy life 😊
Yes, despite having a PCR, my case was quite advanced, and I had affected lymph nodes, so radiation was always the minimum I would have to do. The doctor explained that because I’m still young, it's a bit more concerning due to the probability of developing a secondary cancer in the irradiated area. That probability increases over the years. But the benefits outweigh the risks, so I went ahead with it, and I finished last Wednesday. Everything went well—I have slightly pink and sensitive skin, but no wounds at all. I think it all looks really good.
I didn’t have muscle pain with Phesgo (which I had alongside chemo), I just felt quite a bit of pain in my thigh from the injection, but only the first time. After that, I didn’t feel anything. With Herceptin, I had a runny nose the first time, but the second time, I had no side effects at all. However, I read that mild side effects, including pain, are common but tend to lessen over time as the body gets used to the treatment.
As for the surgery, I really have no complaints—it went very well, and the scar is barely visible now, which honestly surprises me. My only issue is that the operated breast looks perfect, lifted, but since nothing was done to the other one (which, being larger and heavier, naturally sags more), they look quite different. I’ll probably need another surgery, and it makes me sad because they could have done it on the same day, but I didn’t even have the chance to speak with the surgeon before the procedure.
A big hug to you all—keep in touch!
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@grammie2 SO very sorry for your loss.
@djschmidt1 I hope you get all of your "kinks" worked out and will be pain free!
Nothing new to report here, except I am SO ready for this drain to get out of my body.
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Thank you all for the words of comfort and love regarding Dad's passing. As I told my boys, this part of life sucks.
@djschmidt1 sorry you are having the nerve issues. That has to be painful and aggravating! I've had some pain near the surgical sites and feel those are due to the seroma and swelling. I wore my compression bra for two days and it def. helped. I need to be more faithful in wearing those. I think the swelling is the cause of my pain.
I think as far as the muscle cramps/soreness, I hadn't really put it together because of all of the crazy things chemo causes. But now it's just Phesgo, I am paying more attention. It is just weird crazy cramps in my legs, hands, abs and feet. And I feel like my leg muscles are achy. I am getting close to 60 so part of it could be age. But I swear it is worse the week or so after Phesgo. And last week I barely had any aches after missing my normal every 3 week dose.
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Hi all! I had my post-op follow-up appointment today. Everything is healing nicely. I still have to keep the drainage tube in for a few days more. My surgeon wants me to have two straight days of drainage at 30 ml or less. I'm SO close! I had 35 on Sunday and 32 yesterday. I'm hoping today and tomorrow's amounts are 30 or less as I have my first Kadcyla treatment then and can just go down one floor to the surgeon's office for removal. Keep your fingers crossed! I will not see my surgeon again for at least six months - yay! I have been referred to a radiologist and physical therapy…both standard. I found out the radiology group also have a location that's only 20 minutes from me, so I won't have to drive 1 1/2 hours each way once I start…double yay! Physical therapy is standard after node removal - I'm sure you all know this. I did ask my surgeon about the nodes. I was worried that the cancer had spread to my nodes so quickly from my ultrasound on 1/7 to my first surgery on 1/27. My surgeon quickly said no, it just wasn't picked up on the ultrasound. If it had been picked up, he would have done a sentinel biopsy and would have known to do an axillary lymph node dissection at the first surgery. That made me feel better. I was getting scared thinking it could spread that quickly. He also said that he only had to remove three nodes at my second surgery, and they interpret the pathology report stating they had a trace of cancer the same as a negative result. So, at this moment I'm pretty much cancer free, unless there are some little buggers floating around my body. A month of radiation and Kadcyla every three weeks for one year will (should) take care of them. I figured it up, it should be 17 or 18 treatments of Kadcyla. Oh! I am happy to report that I have peach fuzz on my head - WOOOOOOOHOOOOOO!! It's the little things, right?
@grammie2 - Your achy legs are more than likely peripheral neuropathy. I had it so bad after my last TCHP treatment. I felt like I had ran a marathon when in reality I just walked to the kitchen. I found some PT type exercises and stretches on YouTube that have helped tremendously. They are super easy and not time consuming at all. Below is one of my favorites - it's also one of the easiest, except for the towel grab. I have a hard time with that.
https://youtu.be/VJlKrfcy0PA?si=21MFzgxRwIiK7liY
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Hi all, catching up! Life has kept me busy and rehabbing from my graves flare up which left me quite deconditioned. Started working out, lifting light weights and just have to stick with it. Few days ago got yeast infection - fun times😆. My GYN says it happens more often when women start hitting perimenopause. I will be starting low dose estrogen vaginal cream after diflucan to help prevent these frequent yeast infections. My MO gave the blessing that it was ok to proceed. Anybody else on Estrogen?
@grammie2 so sorry for your loss. I hope peace and strength find it's way to you and your family.
@beekaycro24 I very much hated my drains post BMX.. I had to keep my left one in forever and it was so uncomfortable and 😖..ugh I feel for you. Hang in there! Peach fuzz - good for you! Happy for you!
@djschmidt1 sorry to hear about the armpit/chest pain. I had terrible pain and a feeling of tightness under armpit and pec muscle/rib cage after BMX. I found that I had developed possible cording and superficial thrombus over ribs (later was do freaking painful). I basically treated thrombus with a week of aspirin and it went away. I had a lot of PT to work on stretching out my very tight pec muscle and lymphedema massage (had 2 lymph nodes removed but still felt the swelling). Maybe because I'm petite? Who knows but it sucked for a while before it got better. I still sleep with my axilla pillow under left arm as I feel more comfortable in the morning re lymphedema than without. Whatever works, right?
@jessybessy hoping this journey brings u good news!
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@snm thanks for sharing your experience that sounds exactly like what I am dealing with. PT has helped some but hasn't touched the tenderness. I want to jump out of my skin when they try to massage it..nope, nope, nope. And I am not a low pain threshold person.
Sorry to hear about your lady parts issue. I wish you a swift recovery as those are uncomfortable.0 -
Hello lovely ladies. I am still in disbelief, but happy to share that I got a PCR!
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@jessybessy yay!! Praise the Lord!
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@jessybessy wahooooooooo!!!!
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SO happy for you!!!! @jessybessy
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@jessybessy that's so amazing! Way to stick with it!
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Hi ladies!!!
@jessybessy awesome news and for you too @beekaycro24. God is good!
Still trying to catch up on here! Hope everyone is having a great week so far!
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@grammie2 God IS good! Does your tenderness on your arm feel almost like a carpet burn? The back of my arm has felt that way since surgery, but has become better in that location but now I'm tender on the part of my arm facing more towards my body. I wonder if it's nerves waking up? I am still super numb on my cancer breast and arm pit area.
My first Kadcyla treatment has been put off for one week since I still have the drain in from my lumpectomy. My onc did not want to risk me getting an infection due to low platelets from the treatment (Kadcyla typically lowers them) which would also delay my radiation therapy. If my drain output is 30 or less today, then I can go have it removed tomorrow. Y'all send good vibes this way for that to happen! That would also give me almost a full week for the wound to close and begin healing.
Hope everyone has a good weekend!!
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Hi ladies!
@jessybessy you already know that I was super happy with your PCR 😊! It’s always great to know that chemotherapy killed all the cells, and now it’s just about doing the next treatments for some extra reassurance. Keep us updated!
@beekaycro24 even though there was no PCR in your case, you also no longer have cancer cells in your body, and that’s amazing! I think your drain should be removed soon—I’m hoping it’ll be tomorrow! I still have some numbness in the surgery area too, and after radiation, things feel "weird"—the skin has a strange texture and little sensitivity. How great that your hair is starting to grow back! Mine is just starting now as well, finally. How are your eyebrows and eyelashes? Mine are growing slowly, but they’re still not very noticeable.
@djschmidt1 I think your cramps are due to the perjeta because I haven’t had any pain with Herceptin (I am only having Herceptin, O don't know why), just a runny nose. Doesn’t that happen to you too? That sensitivity sounds annoying—I believe it will get better over time! I don’t have tenderness, but when I lift my arm, it feels like it pulls the upper part of my breast, and I get a strange sensation 😅
@snm good luck with your workouts! I’m also training at home, about 20 minutes with light weights for now. We need to try to keep it consistent! I think I’m in early menopause—I haven’t had my period since, and my doctor isn’t sure if it will come back. I’ve been having terrible hot flashes several times a day. I hope this reverses, but if not, I’ll have to see what I can do to improve the symptoms.
Hugs to all!
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@catarina_fm I still have only the one eyelash on my right eye and no sign of anything on my left. My left eyebrow still has the middle section completely missing and I noticed this morning that my right eyebrow has thinned tremendously. I'm so excited over my hair though. I've been going without my hair covers whenever it's warm enough outside (which luckily it has been this week). I was even able to ride around in my convertible yesterday with the top off. I have to wear a ball cap though so head and face won't get sunburned.
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@beekaycro24 Sending you healing drain vibes! I hope it can come out today!
I’m getting the nanoblading done on my brows this morning (round one). Wish me luck!
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@aborayis I wanna see…post a pic!
It looks like I'm on go for drain removal today…WOOT-WOOT!!
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Well Happy March people!! This is my one year anniversary. Diagnosed in March of 2024. Whew. Seems like forever ago and then seems like last week!!!
@beekaycro24 yay on getting your drain out!!! Praying now all of your next steps can start progressing!
@aborayis yes, please post a pic!! I'm going to the US Virgin Islands at the end of April. I was hoping my hair would be way longer/fuller and my lashes and brows back to normal. Everything is getting there but not normal at all. Anyone done false lashes?
How's everyone else doing? I have worn my compression bra almost all last week and can tell a big difference in the swelling and discomfort near the seroma and in my armpit. I'm sure the discomfort is from swelling. I have a follow up with my radiation team Tuesday. Curious if they will restart PT.
I only have two co-workers and one of them has to go for a biopsy for microcalcifications soon. I know my tests have said I have those too, but apparently they are only concerning if they form a weird pattern or are in clusters. Praying hers is benign and not an issue.
Hope everyone is having a fun weekend!!
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Congratulations to all the awesome milestones from drain removal, to 1yr anniversary, to new beautiful eyebrows to awesome trip to Virgin islands (lucky dog 😉) to getting one step closer to a new peaceful norm with stretching and exercise! Lots to be grateful for!
I saw a cool movie on post mastectomy tattoos - inspirational. I'll try to share link
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https://www.fullcircledoc.com/bloom
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The male tattoo artist in the video actually did my 3D nipple tattoos! Really kind and talented
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