Apparently I Am "Just Diagnosed." :(

MinusTwo

LW - Glad your PET is done. Really, don't panic about the PET results. There are often ambiguous findings, which is why some docs will never order that test at all. Finding something does NOT automatically mean cancer - or for that matter Stage 4. Nothing's automatic about this damn disease.

blue22

Hi LW,

Yes I did have DCIS in my right, and IBC in my left, but we did not know it was DCIS going into surgery, just abnormal cells (I can look up the exact terminology, don't remember it off the top of my head thanks to chemo brain...). I had a left mastectomy and lymph node dissection. Right side was only lumpectomy, no lymph nodes removed there. All my margins were clear.

I did have targeted therapy too - after surgery - one year of herceptin/perjetta. For part of that time I had Xeloda. Yes, I did have side effects, but honestly, you really just get through it all. It is not fun, but it is tolerable.

My medical team tends to not get into the nitty gritty details until it is time to deal with them. In other words, we didn't get into too much details of side effects and what to expect for treatment weeks or months off. It is much easier that way to take each treatment as it comes. That being said, I did have a general idea of what to expect. Once we were closer to treatment everything was covered in depth. My MO is amazing.

I highly recommend trying to focus on one treatment at a time Don't think about what is coming months from now, just what you have to do each day, or each week. It is manageable, and not as overwhelming that way. Honestly, the hardest part is psychological.

I'm also glad you are scheduled for the port - I loved having mine.

Hoping the best for the PET scan results. For me it was such a whirlwind and shock that I wasn't really thinking about them either. I think my mammogram/ultrasound was on a Thursday and the PET scan maybe the following Tuesday.

Hopefully the weather will cooperate and you can get outside this weekend? Taking walks etc is so important! Maybe you can do some shopping for head coverings or wigs, whatever you decide you want to do. Have fun with those. (I didn't really mind losing my hair... it is just hair, it grows back)

Take Care,

Blue

Anonymous

Hi Blue,

That was me asking questions, not LW.

I thought there might be some reasurrance there if not having double mx.

Of course you are right in not looking too far ahead and getting overwhelmed.

So glad you got through all your tx without too much trouble.

Astrid.🌺

LW422

Astrid, I'm certain you sound just like Crocodile Dundee, but in a higher pitch. Amirite???

LW422

Blue, I think we're having a rainy weekend but I'll try to do something fun. Did you have skin punch biopsies? I swear, those things have made the biggest mess of my poor boob. The holes they left are as big as BBs, and made the entire area bright red. I'm putting antibiotic cream on them.

I'm actually looking forward to getting started with chemo and to getting this show on the road. Now that I know what I'm facing I don't feel quite so terrified by the whole mess.

blue22

I didn't have problems with the punch biopsies that I remember... but the MRI guided biopsy (right breast) was NOT fun. They didn't give me enough lidocaine and while they were digging in there they hit a nerve or something and it hurt, and I moved, not good.

After one of the core biopsies (I had multiple) I started bleeding again and had blood all over the bathroom counter and floor (sounds worse than it was) and my daughter nearly passed out.

I had one punch biopsy in the IBC breast before diagnosis, and one after I finished chemo.

I've become so numb to all of this at this point. I think I've had every possible biopsy at this point... I feel like I should have one of those punch cards for every possible medication, biopsy type, scan type, surgery type etc!

My left breast was a mess after the multiple biopsies. But I didn't really care since I knew they were going to chop it off anyway. My poor right breast (the remaining one) has had the MRI guided biopsy, the lumpectomy, and then after all that another type of biopsy that is similar to how they do the MRI guided one. That breast is now funny looking and kind of sad looking too.

I'm so glad I am not attached to the appearance of my chest... I get kind of mad sometimes at how the media etc. make women so self conscious about their breasts. It is so detrimental...

blue22

Hi Astrid!

Sorry for not paying enough attention - was catching up right before making dinner and in a bit of a hurry.

So far, no lymphedema - although this is always on my mind.

The radiation really did a number on my mobility, but not until several months later and I was not expecting it. Suddenly it was as if my skin was glued to my ribs and my range of motion was significantly different between the two sides. I should have gone back to physical therapy after I healed from radiation but forgot, then Covid hit, and suddenly I found I had serious mobility issues. I went back to physical therapy, and that helped a lot, but I have to stretch every day, multiple times a day. I do find that when I do yoga or some other types of exercises I can have sudden pain in my back that seems to stem from the imbalance between the two sides.

Anonymous

Oh Blue!

What a prolonged and awful ride you have been on. I so hope everything works well and keeps the beast at bay. Also glad you improved your mobility at least a bit. Yes I'm sure the imbalance would bring issues to keep an eye on.

LW....whelllllll!!! Crocodile Dundee up an octave? I almost spat out my tea!🤣

Oh dear Lord I hope not!!

I'd rather sound like Mary Poppins....no....no....Benedict Cumberbatch if he was female. If you don't know who he is, I recommend downloading the Sherlock Holmes series with him in it. (I hope folks don't mind us bringing a little light relief to these truly awful dx's)

LW422

Bless you, Blue. You have really been through a lot of horror and I'm so sorry that you had to endure it. But on the other hand, I'm glad all the advances in care have made it possible for us all to have such care at this point.

Right now I need to thank heavens my left breast is symptom-free and pray that it stays that way. I still want a double mastectomy so we'll see how things progress.

Hope you're having a good weekend so far.

LW422

LOL, Astrid. I was trying to come up with a famous Aussie and suddenly Crocodile Dundee popped into my head. I'm sure no one objects to a little fun on these threads; we can't all be morose and playing funeral music in the background all the time. Have a great weekend.

Anonymous

How are you doing LW? How is your DH coping?

Thinking of you

LW422

Hiya, Astrid. Hub and I are doing OK. I have my moments but he is steady on the course; he's so positive that I can handle anything. We are a blended family with 5 kids; 3 his and 2 mine... and they are all very supportive and loving. I can't imagine facing this without each of them in my life. (All are grown and living in different parts of the state; one son on the west coast in Oregon.) I have loving support and it really helps.

How are you doing these days?

Anonymous

Hey there L Dub!

Well, we were fortunate our daughter came to stay for a few weeks over Christmas. She missed a covid related border closure in Sydney by only a few hours. So lovely to spend time with her.

It is really really hot today, so a bit of movie watching until the cool change methinks!

Having a staycation right now until the work/study year kicks back into full swing.

Booked a little beach stay down the coast mid feb.

Waiting for results from bone scan and dexa scan . Hopefully get both from GP (internist?) On Wednesday. Not expecting anything more sinister from bone scan than more evidence of osteoarthritis and maybe bursitis.

Dexa...a bit worried...I already have osteopenia so hoping it still is.

So very happy to hear you have such beautiful family support. Love gets us through eh?

Hoping your port op goes smoothly.

🙏🌺🙂

LW422

Sounds like a lovely visit with your daughter. I am sending good vibes for your scan results; the waiting is always hard. I'm anxious over my PET scan and wish I could relax for just a while. It's time for me to get a good result for a change.

Tomorrow's the brain MRI and somehow I'm not concerned about that. The tech may have trouble finding a brain in there, though.

Anonymous

ha!!!

Sorry ma'am. We tried, but could not locate it. Have you perhaps left it in your car? Or maybe your youth?

Anonymous

yes, no doubt. PET scan results. A big one for you. When will you get those?

LW422

Astrid--I don't know when I'll get the PET scan results; there's nothing in My Chart so I suppose that's a good thing. I'd be making myself crazy(er) trying to interpret terminology which would just upset me again. I had a meltdown last night and I'm trying to hold it together.

I had the brain MRI today. Thursday I have a full day... port pre-op consultation, blood work, another Covid test, EKG, echo-cardiogram. Port installation is Monday; consult with MO on Tuesday. It's show time, people.

Beesy_The_Other_One

LW—Give yourself some grace. This was hard for all of us but during a global pandemic, it quadruples the stress, in my opinion. You have friends who are rooting for you. Remember, you don’t have to be brave. You just have to show up. 😉

LW422

Beesy- I just feel so sad, scared and defeated. Where did my life go? I didn't know I had so many tears to shed.

Anonymous

😥💝💝💝🙏🌸

It is going to be ok LW. Just break it down into a few hours at a time. Whatever the news is, you will deaL with it in your own unique and impeccable style. Meltdowns, 2 steps back, 1 forward...whatever you are feeling..it is so good that you can express it and with your husband or on your own. There is room for all the feelings that hit you and letting them have voice is a precious gift.

Acceptance for what is can only come after all these feelins...grief, anger, frustration, pain sorrow...everything!

Whwn overwhelmed just bring it back to right now and breathing in and out.

Holding you in my thoughts and wishing peace and comfort to surround you like a protective coat.

MinusTwo

Really - once the plan is finalized and you get started, it's truly much easier. Good luck with the prep stuff.

LW422

Thanks everyone for the encouragement. I'm in a better frame of mind this morning; they called to tell me that my PET and brain MRI are both CLEAR!! I was so worried about some small lesions on my liver shown in the breast MRI, but the PET scan indicates they are nothing of concern. So according to the PET scan, my cancer is confined to right breast and the lymph node under my right arm; I feel like I won the lottery today!

They did add a vaginal ultrasound to my list of upcoming fun events, so something else to look forward to.

LW422

Thank you, Jana. I was really fretting about the PET results; what a huge relief. I think they are adding the ultrasound to my Thursday lineup, so that will be 6 appointments in one day.

Nice that I only have to make one trip to the medical center to get all those done, though.

Harley07

Great news!! Keeping you in my thoughts

MelissaDallas

Breathing a huge sigh of relief for you

Beesy_The_Other_One

LW, this is wonderful news! Rejoicing with you!

LW422

Thanks Harley, Melissa and Beesy! It's so nice to hear something positive for a change. You guys are the best!

Anonymous

I'm sharing that huge sigh of relief.

So, so happy for you with this news.

6 appointments? Pffft!

Brava LW. 💗🌸💗

LW422

Thanks, Astrid. Looks like they couldn't wedge the vaginal ultrasound into Thursday's schedule so it was bumped to Friday. My entire life is at MD Anderson these days.

Anonymous

your new job for sure.🌺