Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Welcome BayouQueen and eksmama01. The ladies here are very welcoming and a great source of support and information.
Wishing you both all the best
Update on dil1 - her biopsy was normal but they said she is high risk normal so they are sending her to a breast surgeon July 11 who they said will either decide to surgically remove the high risk area or keep monitoring with mammograms.
Any insight? What she should ask etc.
Update on me - called the pulmonologist today as I haven’t heard anything. They said they don’t give results over the phone. Make an appointment. Which I did. I said - well what is your procedure if something was abnormal etc. she said most likely the dr. would call. So I’m picturing wasting my time and a copay but might need this dr. In the future.
Need a blood test this week as I forgot my pcp visit next week.
My l leg is bothering me. Visions of a blood clot dance in my head sigh,
Ds3 going to Disney with a gf tomm and staying at Dolphin. He just got back from Mexico. Crazy!
GAGWTA

 

[Grace&Carolinesmom]

lmp----Thanks for updating

Can't say I have ever heard of a biopsy being high risk normal? Does she have any genetic mutations that I forgot?

Ugh----sometimes doctors rules are so exhausting. Yup. Fine. Make the appt, pay the copay, sit and wait twiddling your thumbs in his office. Agreeing to dance does often pave the way to a better relationship when needed down the road. Good luck!! Could your leg just be a nerve thing or lymphatic issue??

 

[CaleCakes]

Checking in as it's been a while. Coming up on 1 year since my last chemo treatment, celebrating quietly to myself as I don't want family and friends to know I still think about it. I know that sounds odd, but it's just how I've been this whole time. The "I've got this" on the outside but kinda freaked on the inside.

Some disappointing news to report, my mother felt a lump a few months back and despite a mammogram that came back normal, she still felt it so I made her an appointment with my surgeon who did a biopsy. Results as suspected, IDC. Terrible of me but I can't remember if it's HER2 + or -. I think +. Anyways, she had a lumpectomy and 1 node had an enclosed cell, so she will be having radiation. We go in the morning to see our oncologists. Not exactly what something I want I common with anyone nevermind my parent. She was very dramatic at first, found herself down a Google rabbit hole despite my warnings, but she is doing better now that there is a plan. I didn't have radiation so I am relying on research to help educate her. I just feel bad she has to go there every day for probably 5 weeks and it's about 40 mins each way. Oddly enough, it's my dad and I that are BRCA1+ not my mom. I pray everyday I didn't pass this on to my kids.

LMP- about your dil1, sorry if I missed it, but did she have genetic testing? Normal high risk maybe because she has the mutation but her tissue is normal right now. Also sorry to hear about your troubles. As said, the appointment may be a waste but worth it to build a relationship.

Welcome eksmama01 and BayouQueen. Although not a cool club to be in, this is a great group to find support and bounce questions off of, or even if your just up in the middle of the night like me.

 

[BayouQueen]

Thank you @luvmarypoppins and @CaleCakes for the kind welcome. I'm here 11 years post-diagnosis, so maybe not up to date with current treatments and things. But BC is, sadly, always at the back of the mind.

@CaleCakes , that's sad news about your mom. Not something we want to share. As you said, this is the club nobody wants to join, but so many have done so. You will be a comfort to your mom. Not the shared experience we want, but brings us closer nonetheless.

@luvmarypoppins , never heard of "high risk normal," but sounds like it leads to a referral to the breast surgeon for assessment, so that's certainly a good thing. It's nice to have more professional eyes watching out for us.

Again, many thanks for the welcome and wishing the best for all who have unfortunately faced "The Big C."

 

[Grace&Carolinesmom]

Checking in as it's been a while. Coming up on 1 year since my last chemo treatment, celebrating quietly to myself as I don't want family and friends to know I still think about it. I know that sounds odd, but it's just how I've been this whole time. The "I've got this" on the outside but kinda freaked on the inside.

Some disappointing news to report, my mother felt a lump a few months back and despite a mammogram that came back normal, she still felt it so I made her an appointment with my surgeon who did a biopsy. Results as suspected, IDC. Terrible of me but I can't remember if it's HER2 + or -. I think +. Anyways, she had a lumpectomy and 1 node had an enclosed cell, so she will be having radiation. We go in the morning to see our oncologists. Not exactly what something I want I common with anyone nevermind my parent. She was very dramatic at first, found herself down a Google rabbit hole despite my warnings, but she is doing better now that there is a plan. I didn't have radiation so I am relying on research to help educate her. I just feel bad she has to go there every day for probably 5 weeks and it's about 40 mins each way. Oddly enough, it's my dad and I that are BRCA1+ not my mom. I pray everyday I didn't pass this on to my kids.

I completely understand your freaking out on the inside. I had a week of that before my mammogram last week, worried what it might find. Luckily the results were normal. Next freak out is scheduled for December, lol. I may have a mini-freak after the 4th as I have blood tests and an appt scheduled with my oncologist for a check up.

Your mom is lucky that she had you to push the issue and get the biopsy. My advice to her for the radiation is to follow the advice and make sure she slathers on the creme/ointment twice a day. Radiation doesn't "feel" like anything during treatments but her skin will definitely show the side effects. Also, no underwire bras. I wore bras from Shefit for 2 months at least and never had the complications that can come from pressure points on the radiated skin.

 

[Hisgirl]

Hey yall ~ I just got a diagnosis.

IDC grade 1.

I'm researching out the wazoo to learn so when I go to the breast surgeon on Thursday (5 days from now).

Honestly, it feels like my breast betrayed me and I want them both off. I'm researching the DIEP reconstruction.

Scared, wantiing it done and over and want to start healing and getting stronger.

I have a grand baby coming in 3 and a half months.

 

[Grace&Carolinesmom]

Hey yall ~ I just got a diagnosis.

IDC grade 1.

I'm researching out the wazoo to learn so when I go to the breast surgeon on Thursday (5 days from now).

Honestly, it feels like my breast betrayed me and I want them both off. I'm researching the DIEP reconstruction.

Scared, wantiing it done and over and want to start healing and getting stronger.

I have a grand baby coming in 3 and a half months.

Welcome to the club that no one wants to join!! Sad to hear but glad you found our thread

I know how you feel about hating your breasts right now but your feelings may change. I felt that way for about 6 months but slowly came to accept them and move on. I was diagnosed (exactly 2 years ago yesterday) with triple negative breast cancer very early stage and my genetic testing was a variation of unknown significance for the ATM gene. After many months of researching and talking with several doctors, I decided to keep my breasts for now. If I have a local recurrence, I will then do a full mastectomy and possible DIEP reconstruction. I had both chemo and radiation after my lumpectomy.

Talk to your oncologist, a breast specialist, your surgeon, and any other doctors who can give you information to make a decision that makes you feel comfortable with your body and your health going forward. It's your body and your decision and don't let any one pressure you one way or another.

Congrats on the impending arrival of your grandbaby!!

 

[CaleCakes]

Hey yall ~ I just got a diagnosis.

IDC grade 1.

I'm researching out the wazoo to learn so when I go to the breast surgeon on Thursday (5 days from now).

Honestly, it feels like my breast betrayed me and I want them both off. I'm researching the DIEP reconstruction.

Scared, wantiing it done and over and want to start healing and getting stronger.

I have a grand baby coming in 3 and a half months.

Hi Hisgirl, welcome. As Grace&Carolinesmom said its the club that no one wants to join. I hope you find peace in knowing that we are a supportive bunch always here to lend an ear.
I was diagnosed with TNBC in November 2021, and tested positive for BRCA1. After a lumpectomy and 16 round of chemotherapy I had a bilateral mastectomy and DIEP in July 2022. I hear what you mean about feeling your body betrayed you. I remember thinking when I was first diagnosed that the very things that fed my children for the first year of their lives was now trying to kill me. It was a lot to wrap my head around but I trusted my research, doctors, and my mind and made the decision that was right for me. If I can help answer and question about DIEP or anything really I'd be happy to help. Feel free to PM if you feel more comfortable that way.

Be strong and keep looking forward to the arrival of your new grand baby.

 

[CaleCakes]

I completely understand your freaking out on the inside. I had a week of that before my mammogram last week, worried what it might find. Luckily the results were normal. Next freak out is scheduled for December, lol. I may have a mini-freak after the 4th as I have blood tests and an appt scheduled with my oncologist for a check up.

Your mom is lucky that she had you to push the issue and get the biopsy. My advice to her for the radiation is to follow the advice and make sure she slathers on the creme/ointment twice a day. Radiation doesn't "feel" like anything during treatments but her skin will definitely show the side effects. Also, no underwire bras. I wore bras from Shefit for 2 months at least and never had the complications that can come from pressure points on the radiated skin.

Do you recommend any particular cream or ointment? The sheet the doc gave her said aquaphor or eucerin. I use aquaphor for my lips but wouldn't it be kinda gooey in large quantities? Also, the sheet said to wear a tee shirt under her bra for treatment. Does that sound familiar?
Little personal freak out sessions are probably part of the package. Do you think? I saw my lab results and that CA-15 marker was slightly elevated from Feb. I'm trying not to read into it.

 

[Grace&Carolinesmom]

Do you recommend any particular cream or ointment? The sheet the doc gave her said aquaphor or eucerin. I use aquaphor for my lips but wouldn't it be kinda gooey in large quantities? Also, the sheet said to wear a tee shirt under her bra for treatment. Does that sound familiar?
Little personal freak out sessions are probably part of the package. Do you think? I saw my lab results and that CA-15 marker was slightly elevated from Feb. I'm trying not to read into it.

Yes, Aquaphor is very goopy, lol. I used Aquaphor before bed and wore an older tshirt so that the ointment wouldn't stain anything nice or get all over the sheets. After my morning shower, I would use Cerave cream (it's in a tub and really thick) and I would kinda let it soak in before putting on my bra. It's also important that she use a super gentle moisturizing soap. I used the Dove moisturizing unscented bar soap.

My doctor/nurses did not mention wearing a tshirt under my bra. I was told to wear a bra with no underwire. Not sure how large her breasts are and if she usually wears an underwire?? If she normally wears an underwire, have her get a few athletic style bras. I bought bras from a website called Shefit. They work great. I wore them every day through radiation and for at least a month to 6 weeks afterwards until my doctor gave me the OK to go back to underwires.

I agree, personal freak outs are definitely part of the whole cancer package. Any new pain or weirdness makes my mind go to that dark place....and before every mammogram, MRI, and blood test I have cycles of anxiety until I am told all is good.

 

[Pea-n-Me]

Welcome @Hisgirl! You sound strong and positive, like you know what you want. Good for you. So many of us struggle with decisions about surgeries and other things. I had three choices that I had to decide on. For me I think the important thing was realizing that the type of surgery I had wouldn’t determine my outcome, and that was kind of a sober thought. (I preferred the thought of, ”Just cut them off and I’ll be fine!”; but sadly, not how it works. ) I was also working and had two young kids, with limited sick time (knowing my treatment would take up the better part of a year even without reconstruction surgery), so that influenced my decisions, too. It all worked out. Good luck on Thursday. We’re here.

@eksmama01 How are you doing?

@lovemarypoppins, I, too, am not sure what high risk normal means, but I was faced with that situation once, post-treatment, where they were going to do an “excisional biopsy” where they put an wire in the spot and take out the whole area even though the needle biopsy was negative. They were worried it could be a false-negative because the needle only takes out a small amount of tissue even when they do it in different spots. Anyway, I got in for the procedure at the hospital, and the radiologist there could not find the spot. At all. It was gone. He said had he seen the original spot he would’ve sent me home that day and said to just follow up, saying it was likely because I was in the midst of my menstrual cycle and there was fluid present in my breasts that day, apparently. So I tried afterward not to book my mammograms on days that I was menstruating! Because that caused me several weeks of additional stress when I should’ve been relieved, just a month or two after going through chemo and radiation and all that. My SIL right now is dealing w something they’re watching and even though it’s nice and round and unlikely to be cancer according to her health team, she’s sweating it. Many of us have been there before our actual disease so we know it can be worrisome. @snappy used to always recommend here looking at the BIRAD score, which helps determine HOW worried they are about a particular spot. Maybe she will stop by at some point.

@Grace&Carolinesmom and @CaleCakes you both sound well. to @BayouQueen!

CaleCakes I’m sorry to hear about your Mom. I used just Aquaphor for my radiation, but I did wind up with third degree burns, so it was pretty uncomfortable for a while. I’ve been through worse, though, is how I thought of it. I wore a sports bra, too. The weirdest thing I thought was not shaving my underarms or using deodorant. (I think I bought that one you can use if I recall.) It was a pain going there every day, but my kids used to come (during summer vacation, and such great snacks there!) and one day staff made me bring my new puppy too! I really liked the staff and my radiation oncologist.

I agree, I have my mammograms coming up and I don’t like to think about it much.

 

[luvmarypoppins]

Hisgirl - Welcome but sorry you have to be here. Everyone here is always very kind and helpful.
Thinking of all those going through testing. I know I put tests out of my mind until I have to deal with them.
Update on dil. - She saw the breast surgeon today. She recommended surgery to remove the rest of the area since there are cells around the microcalcifications that show tissue changes and could contain cancer cells, even though its rare. So she is going to have surgery August 2nd.
Tomm. I see the pulmonologist. My Pcp looked at the CT scan report and she thinks they noted its shrinking but the mass is still there. We will see what he says tomm.
GAGWTA

 

[snappy]

Hisgirl - Welcome but sorry you have to be here. Everyone here is always very kind and helpful.
Thinking of all those going through testing. I know I put tests out of my mind until I have to deal with them.
Update on dil. - She saw the breast surgeon today. She recommended surgery to remove the rest of the area since there are cells around the microcalcifications that show tissue changes and could contain cancer cells, even though its rare. So she is going to have surgery August 2nd.
Tomm. I see the pulmonologist. My Pcp looked at the CT scan report and she thinks they noted its shrinking but the mass is still there. We will see what he says tomm.
GAGWTA

I hope you get good news tomorrow. Come back and update us when you can, please.

 

[snappy]

Hey yall ~ I just got a diagnosis.

IDC grade 1.

I'm researching out the wazoo to learn so when I go to the breast surgeon on Thursday (5 days from now).

Honestly, it feels like my breast betrayed me and I want them both off. I'm researching the DIEP reconstruction.

Scared, wantiing it done and over and want to start healing and getting stronger.

I have a grand baby coming in 3 and a half months.

Sorry you joined the club, but glad you found us here. Hope the visit with her your breast surgeon went well. I had a very tiny area of IDC IN 2004, but DCIS throughout my left breast so needed a mastectomy. Did the reconstruction 2 years later. Had the flap but it wasn’t a DIEP, so the tissue that was used from my tummy had a vein and an artery to attach under my armpit for blood flow. It was very successful in my book. No one was doing DIEP then in my area. If you have reconstruction at the same time as the mastectomy you will have a much smaller scar if any. My breast surgeon advised me to wait 2 years. If you want to PM me please feel free.

 

[snappy]

Welcome @Hisgirl! You sound strong and positive, like you know what you want. Good for you. So many of us struggle with decisions about surgeries and other things. I had three choices that I had to decide on. For me I think the important thing was realizing that the type of surgery I had wouldn’t determine my outcome, and that was kind of a sober thought. (I preferred the thought of, ”Just cut them off and I’ll be fine!”; but sadly, not how it works. ) I was also working and had two young kids, with limited sick time (knowing my treatment would take up the better part of a year even without reconstruction surgery), so that influenced my decisions, too. It all worked out. Good luck on Thursday. We’re here.

@eksmama01 How are you doing?

@lovemarypoppins, I, too, am not sure what high risk normal means, but I was faced with that situation once, post-treatment, where they were going to do an “excisional biopsy” where they put an wire in the spot and take out the whole area even though the needle biopsy was negative. They were worried it could be a false-negative because the needle only takes out a small amount of tissue even when they do it in different spots. Anyway, I got in for the procedure at the hospital, and the radiologist there could not find the spot. At all. It was gone. He said had he seen the original spot he would’ve sent me home that day and said to just follow up, saying it was likely because I was in the midst of my menstrual cycle and there was fluid present in my breasts that day, apparently. So I tried afterward not to book my mammograms on days that I was menstruating! Because that caused me several weeks of additional stress when I should’ve been relieved, just a month or two after going through chemo and radiation and all that. My SIL right now is dealing w something they’re watching and even though it’s nice and round and unlikely to be cancer according to her health team, she’s sweating it. Many of us have been there before our actual disease so we know it can be worrisome. @snappy used to always recommend here looking at the BIRAD score, which helps determine HOW worried they are about a particular spot. Maybe she will stop by at some point.

@Grace&Carolinesmom and @CaleCakes you both sound well. to @BayouQueen!

CaleCakes I’m sorry to hear about your Mom. I used just Aquaphor for my radiation, but I did wind up with third degree burns, so it was pretty uncomfortable for a while. I’ve been through worse, though, is how I thought of it. I wore a sports bra, too. The weirdest thing I thought was not shaving my underarms or using deodorant. (I think I bought that one you can use if I recall.) It was a pain going there every day, but my kids used to come (during summer vacation, and such great snacks there!) and one day staff made me bring my new puppy too! I really liked the staff and my radiation oncologist.

I agree, I have my mammograms coming up and I don’t like to think about it much.

As far as the BIRAD score, mine was a 4 out 5 and that signaled a higher suspicion of cancer than a 3, so a stereotactic needle biopsy was ordered. I had many calcifications, and they presented all over the breast as they were in the ductal system (DCIS). Literally all over the breast but especially in the upper left quadrant and right under the nipple. It was challenging for the radiologist to biopsy because some areas were really close under the skin. My sister had a diagnostic mammogram a few weeks /months after mine as she too had calcifications but hers was BIRAD 3 and a surgical biopsy was ordered. Luckily her areas of concern were benign which happens from what I remember about 80 % of the time, fortunately.

My mom was diagnosed with DCIS 4 years after me in 2008 and also had a mastectomy, left breast but no IDC component. And she did fine with all of it, no chemo no rads, no complications or recurrence and lived to the ripe old age of 92.

 

[Pea-n-Me]

Hisgirl - Welcome but sorry you have to be here. Everyone here is always very kind and helpful.
Thinking of all those going through testing. I know I put tests out of my mind until I have to deal with them.
Update on dil. - She saw the breast surgeon today. She recommended surgery to remove the rest of the area since there are cells around the microcalcifications that show tissue changes and could contain cancer cells, even though its rare. So she is going to have surgery August 2nd.
Tomm. I see the pulmonologist. My Pcp looked at the CT scan report and she thinks they noted its shrinking but the mass is still there. We will see what he says tomm.
GAGWTA

Good luck at your pulmonary appt tomorrow, lmp. And good for your DIL.

 

[Pea-n-Me]

Nice to see you @snappy!

 

[Hisgirl]

Back from the breast surgeon and the plastic surgeon. I brought a good friend with me and it went well. First visit, he said HR and PR positive but still waiting on the final test. Grade 1, stage 1. Said I was a candidate for lumpectomy and radiation but I said I preferred to say bye bye to the girls, they served me well, fed my babies, who are now 34 and 36. I met with plastic surgeon to discuss the goldilocks reconstruction.

It's where they take skin that would have been used to cover the chest on a double mastectomy but do some magical folds here and there and voila, you end up with a 'breast mound' that honestly looks amazing...sporty boobs!

I am awaiting a date now.

 

[snappy]

Goldilocks reconstruction. it sounds amazing. I am going to research this. It is amazing how far reconstruction has come in 20 years. Thanks for the update.

 

[Pea-n-Me]

Back from the breast surgeon and the plastic surgeon. I brought a good friend with me and it went well. First visit, he said HR and PR positive but still waiting on the final test. Grade 1, stage 1. Said I was a candidate for lumpectomy and radiation but I said I preferred to say bye bye to the girls, they served me well, fed my babies, who are now 34 and 36. I met with plastic surgeon to discuss the goldilocks reconstruction.

It's where they take skin that would have been used to cover the chest on a double mastectomy but do some magical folds here and there and voila, you end up with a 'breast mound' that honestly looks amazing...sporty boobs!

I am awaiting a date now.

Nice to have that decision made!