Topic: Apparently I Am "Just Diagnosed." :(

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: Jan 13, 2021 01:34PM - edited Nov 22, 2022 10:23AM by lw422

Posted on: Jan 13, 2021 01:34PM - edited Nov 22, 2022 10:23AM by lw422

lw422 wrote:

Hello everyone. Here I am, terrified and confused like most of you were when you got "The News No One Wants To Hear." I had what appeared to be a light pink bruise on my right breast the week before Christmas and wasn't concerned. Watched it for a week or so to see if it would go away and decided to Google. Bad idea, but at least it prompted me to see my PCP right away. (Note that I have no peau-de-orange, no heat in the breast, no 1/3 of breast turning red, no lump, no hardness, no itching, no other apparent symptoms other than breast is slightly swollen and a light pink "bruise".)

My doctor took one look and said I needed to have a mammo/sono and I scheduled them as soon as I could. Luckily for me, I live 25 miles from MD Anderson in Houston, so that's where I spent my day yesterday. I had a diagnostic mammogram w/tomo, a sonogram, and two biopsies...needle biopsy to lymph node and core biopsy to the largest mass in my breast with clip placement. I will have followup MRI and skin punch biopsies next week (hopefully) and meet with my "team."

There are no results back from the core biopsy yet but the lymph node was positive for cancer so I'm pretty sure I know what the core biopsy will say. Naturally my biggest fear is IBC, so even though I'm holding it together so far, an IBC diagnosis will be devastating (not that any BC diagnosis isn't devastating, but IBC... UGH.)


Dx IBC, ER-/PR+, HER2-
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Jan 22, 2021 06:18PM minustwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 22, 2021 07:28PM blue22 wrote:

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

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal; Mastectomy; Mastectomy (Left) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2- Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Jan 22, 2021 07:37PM Astrid wrote:

Hi Blue,

That was me asking questions, not LW.Smile

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.🌺

"You cannot step into the same river twice, for other waters are continually flowing on." Heraclitus Dx 6/2002, IDC, Both breasts, 1cm, Stage IIB, Grade 2, 1/7 nodes, ER+/PR+, HER2-, Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2-, Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2-, Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy AC Radiation Therapy Whole breast: Breast, Chest wall
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Jan 22, 2021 07:47PM - edited Jan 22, 2021 07:47PM by lw422

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

Dx IBC, ER-/PR+, HER2-
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Jan 22, 2021 07:51PM lw422 wrote:

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.

Dx IBC, ER-/PR+, HER2-
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Jan 22, 2021 08:49PM blue22 wrote:

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...

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal; Mastectomy; Mastectomy (Left) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2- Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Jan 22, 2021 09:01PM blue22 wrote:

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.



Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy; Lumpectomy (Right); Lymph node removal; Mastectomy; Mastectomy (Left) Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2- Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/8/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Jan 22, 2021 09:45PM Astrid wrote:

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....NerdySillyHeartno....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)


"You cannot step into the same river twice, for other waters are continually flowing on." Heraclitus Dx 6/2002, IDC, Both breasts, 1cm, Stage IIB, Grade 2, 1/7 nodes, ER+/PR+, HER2-, Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2-, Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2-, Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right Chemotherapy AC Radiation Therapy Whole breast: Breast, Chest wall
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Jan 23, 2021 11:55AM lw422 wrote:

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.

Dx IBC, ER-/PR+, HER2-
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Jan 23, 2021 11:58AM lw422 wrote:

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.

Dx IBC, ER-/PR+, HER2-

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