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

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

Posted on: Jan 13, 2021 03:34PM - edited Mar 3, 2021 06:31PM 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 (whatever that means), 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.)

Here's a little blurb from My Chart sonogram test results:

Right breast:
There is right breast global skin thickening, correlating with mammography. A dominant area of right breast skin thickening is seen at 3 o'clock position and correlates with an area of erythema. Skin thickening measures 0.5 cm maximally. There is no sonographic correlation for mammographic asymmetry in the anterior central breast.

There are multiple (at least 5) subcentimeter masses in the upper outer quadrant. This appears to correlate with the mammographic finding of asymmetry in the lateral breast. The largest mass is irregular and hypoechoic with angular margins at 10 o'clock position, 12 cm from the nipple measuring 0.9 x 0.6 x 0.5 cm. This mass was targeted for core biopsy and clip placement today.

Right nodal basins:
There is one malignant-appearing right axillary level I lymph node measuring 1.9 x 1.3 x 1.2 cm with replacement of the fatty hilum. This correlates with the mammogram finding of an abnormal-appearing lymph node. This lymph node was targeted for fine-needle aspiration and clip placement.

There is no right axillary level II, axillary level III, or internal mammary lymphadenopathy. There is no suspicious-appearing lymph node in the right supraclavicular region.

ACR BI-RADS Category: 5: Highly suggestive of malignancy.
Skin punch biopsy is recommended for right breast erythema.
Breast MRI is recommended.

And the result of the needle biopsy of the lymph node:

Immediate AssessmentAdequate cellularity, favor malignant
Major ClassificationMALIGNANT
DiagnosisA. Lymph node, right axilla, fine needle aspiration:

METASTATIC HIGH GRADE CARCINOMA, CONSISTENT WITH BREAST PRIMARY


I hope that "metastatic" thing isn't as scary as it sounds. Singing

Since I don't have the details of what type of cancer I have yet, I'll just put this here and move to the appropriate section once I know for certain what I am facing. I have been reading this forum for about a month but had nothing to contribute except a bunch of angst-filled questions, so I mainly read to see if others had already asked them. Nice to meet you all and I wish the best for all of us.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 19, 2021 03:07PM Beesy_The_Other_One wrote:

lw, glad today is over for you. Tomorrow should be better because you'll be making progress toward treatment, and who knows, they might expedite your biopsy. 😊

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jan 19, 2021 03:12PM LW422 wrote:

Thanks, Beesy. I'm dying to take a nap but then I won't sleep tonight.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 19, 2021 04:16PM JavaJana wrote:

glad the ordeal is over for you lw! The mri sounds fun - not had one of those lol. I pray you get a good sleep tonight, and I know the team will have much more data for you tomorrow. Take care.

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Targeted Therapy 4/8/2020 Perjeta (pertuzumab) Hormonal Therapy 8/13/2020 Femara (letrozole)
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Jan 19, 2021 04:22PM JavaJana wrote:

Helen67 welcome to the Club, and prayers and best wishes for you and Jen as you await your results and plan.

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Targeted Therapy 4/8/2020 Perjeta (pertuzumab) Hormonal Therapy 8/13/2020 Femara (letrozole)
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Jan 19, 2021 04:48PM Beesy_The_Other_One wrote:

Helen67 and Jen (yes, you CAN do this),

We are always sorry when new friends land here, but this is a great community for support and learning. Helen, that's great your gynecologist is helping you find doctors. There's a great thread about DCIS, written by Beesie (not me, the original--I didn't realize there was another Beesy when I chose the name, so I added a "last name" to help ease confusion): Layperson's Guide to DCIS. You should read up before your appointment, because there's a wealth of information there! I guarantee you'll feel much more knowledgable when you meet the surgeon for the first time after reading it.

Jen, let us know what you hear on your biopsy. You're not alone.

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jan 19, 2021 05:22PM - edited Jan 19, 2021 05:38PM by Astrid

IW - Brava!!!

2 down , one to go for now.

Plus your navigational skills are getting a work out. Winking

Sounds pretty awful re MRI. Plenty of quality self-care required. Feet up, deep breath, a few minutes of inner 'forest bathing' (did you know some people pay a forest-bathing guide to take them on a slow forest walk?) I mean....Smilewe can do it for free with eyes closed, right?

All good blessings for your team meeting.

Hug

"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- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Jan 19, 2021 05:25PM Astrid wrote:

Jen, hi!

Thinking of you.

I hope your results meeting goes well.

Let us know.

Sending love and a little courage your way.

Astrid.Heart

"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- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Jan 19, 2021 05:43PM LW422 wrote:

Astrid, you have a way with words. :D Thanks for making me smile.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 19, 2021 05:56PM Astrid wrote:

Back at ya L-dub.


"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- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Jan 20, 2021 03:40PM LW422 wrote:

Today I received my official IBC diagnosis. So now I have a PET scan on Friday and a brain MRI on Monday. The hits just keep on comin'. I should have my chemo port within 2 weeks and then the real fun starts. Found out today that there is no chest wall involvement, which is a good thing.

Guess I'll move over to the IBC board but I might be the only person posting there, so maybe I'll just hang out around here. Wish me luck, y'all.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 04:05PM - edited Jan 20, 2021 04:07PM by Astrid

so sorry you had IBC cofirmed LW.

I can't imagine how you are feeling right now. Such a lot to take in and digest.

It is good that they are so thorough and having a team of knowledgable specialists is a great blessing.

Wonderful to read no chest wall involvement.

Did they have the punch biopsy results yet?

Getting the port is a day procedure and hopefully yours goes smoothly.

The PET is friendly compared to the MRI you had. Just a fair bit of waiting time involved on the day. Brain scan is also ok.

I know that isn't overly comforting for you but it becomes about the little things and treasuring them.

If you find yourself overwhelmed, it can be therapeutic to pull yourself back to here and now. You and your husband, right now, and precious time with him. Gratitude for all that is good in your life. It really helps, I promise.

Sending love and hugs.

Astrid.Hug


"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- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Jan 20, 2021 04:53PM LW422 wrote:

Hi there Astrid. I'm still hangin' in there; I guess the final Dx wasn't such a huge surprise to me. My doctors were very positive and reassuring so I feel OK for the moment. I'm nervous about the scans (PET and brain MRI), but all the tests have made me anxious so I just want to get them over with and get treatment started.

I haven't heard of the skin punch results at all; it was not mentioned today. The MO seemed to believe that I have an excellent chance of a "good result" since my IBC is confined to a relatively small area on my breast. I will have Taxol and AC chemo for 24 weeks.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 05:55PM ElaineTherese wrote:

((Hugs)) The tests and scans just go on, don't they? I'm with Astrid; the PET scan is way more peaceful than an MRI.

I did AC X 4 and Taxol X 12. It's doable, but AC gave me chemo brain. I had to write everything down! Taxol was better for my cognition, but it did give me diarrhea, which was manageable, thanks to Imodium. (I did get to know where every bathroom was in every grocery store in town, though.)

You might want to ask about getting a heart scan before beginning AC so you have a baseline (in a small percentage of breast cancer patients, AC causes heart damage).

Be kind to yourself.

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
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Jan 20, 2021 05:58PM Beesy_The_Other_One wrote:

LW422,

I'm sorry to hear about the IBC diagnosis, but you're in the right place (and I promise you that you'll learn your way around). Regarding the port, the man who does most all of them at MD Anderson (Dr. Ervin Brown) holds the world record for number of port placements. He's a hoot, but does a great job.

You've been diagnosed so quickly--that's good news. Of all types of breast cancer, time is really of the essence with IBC, and you've had a whirlwind diagnosis. You're in great hands.

1997: Phyllodes, R breast. 2018: IDC, L breast. TCHP, BMX, Radiation, Nerlynx. Dx 8/20/2018, IDC, Left, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
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Jan 20, 2021 06:04PM LW422 wrote:

Thanks, ElaineTherese. I was wondering why my MO scheduled an EKG for next week; I guess that heart thing is the reason. He said I'll have 12 weeks of Taxol (once/wk) and then AC once every 3 weeks for 4 times... so a total of 24 weeks. Sounds like my dosage is similar to yours. I hope I can tolerate both of those with few SEs.

Ugh, diarrhea. I have a "nervous stomach" so ever since I started down this road I have been the Queen of Bathroom Emergencies. I hope that will calm down soon.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 06:10PM JavaJana wrote:

🙏🙏🙏 and hugs. You can do this, I promise this phase is seriously the worst part. Chemo sucks, but it will be in the past at some point before you know it. Look into taking glutamine powder if your Onc is ok with it. I feel it helped me tremendously with minimal diarrhea and zero mouth sores. Based on the recommendation from someone on this forum, I used Naked brand I got off Amazon. A scoop once a day was enough to make a difference for me. I did not take it until a week or so after my first chemo, and the rest were 100% better so that's why I'm confident it helped. It is just an amino acid very common in our diet, so it really can't hurt. Love, prayers and hugs

Xgeva 9/2/2020. History: 2 Borderline Serous Ovarian Carcinoma TAH/BSO, 0/15 nodes - 2/18/20. Benign Papilloma/ADH Left breast, excisional biopsy 10/11/2016 Dx 10/1/2019, IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2+ (IHC) Dx 10/23/2019, LCIS/DCIS, Right, 0/1 nodes Surgery 11/19/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right Dx 3/25/2020, IDC, Stage IV, metastasized to bone, 0/2 nodes Chemotherapy 4/8/2020 Taxotere (docetaxel) Targeted Therapy 4/8/2020 Herceptin (trastuzumab) Targeted Therapy 4/8/2020 Perjeta (pertuzumab) Hormonal Therapy 8/13/2020 Femara (letrozole)
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Jan 20, 2021 06:40PM LW422 wrote:

Hiya, Beesy. Yep, my worst fears have been confirmed but I'm strangely calm with it so far. The oncology team were all very positive, particularly about the relatively small area of "IBC" on my breast that hasn't really changed much in 4 weeks. I look forward to meeting Dr. Brown and getting the show on the road!!

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 06:48PM LW422 wrote:

Hey Jana. I'll take those prayers and those hugs, thanks!! I'll ask the doc about the glutamine powder. I will be scouring the forum for chemo tips now that I know what I'll be getting. I have a busy 2 weeks ahead and I'll be glad to have this part in my rearview mirror.

The surgical oncologist wasn't very enthusiastic about my wanting the double mastectomy. She is saying that they prefer to give the best "chance of healing quickly" to the cancerous breast then take the other one off later. I don't quite understand the logic so I will be pushing for a better answer. I'd just rather not have to go back into surgery a second time with all the expense and healing time... again. I'm sure I'll have to go with their recommendation but I sure don't want to.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 07:51PM Astrid wrote:

LW

Maybe faster recovery means faster time getting on to chemo and prevention?


"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- (FISH) Dx 7/2003, IDC, Left, 1cm, Stage IIB, Grade 2, ER+/PR+, HER2- (FISH) Dx 6/2012, ILC, Right, 1cm, Stage IIB, Grade 2, ER+/PR-, HER2- (IHC) Radiation Therapy Whole-breast: Breast, Chest wall Chemotherapy AC Surgery Lymph node removal: Left, Right, Underarm/Axillary; Mastectomy: Left, Right
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Jan 20, 2021 07:58PM sbelizabeth wrote:

Ask your oncologist about taking loratidine (Claritin) for a few days before and after your Neulasta shot. It seriously prevents the bone pain that's so common. Some oncologists know about it, others don't.

I took glutamine and B-complex vitamins to help prevent neuropathy and although I have some in my feet, it's not severe. Again, ask your oncologist.

Some people swear by icing their hands and feet, and sipping on icy drinks, during chemo. It's supposed to help prevent neuropathy and mouth sores.

Exercise. Every day. Even if you just feel like lying around and watching re-runs of Downton Abbey, get out and walk, ride your bike, stroll, meander, whatever. It truly makes a difference.

Check out "Cleaning for a Reason." This organization provides house cleaning for patients going through chemo. It's not available everywhere but if you're in the area, it's a nice experience to not clean your own house.

Do you want a wig, caps, scarves, commando? Think about how you'd like to manage being bald. People typically lose their hair 2 weeks after the first chemo infusion, and it's demoralizing to have hair falling out and lying around everywhere. You can quietly get your head shaved at home or make a party of it.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 20, 2021 08:05PM wrenn wrote:

I'm so sorry your fears were confirmed. Such a scary time but sounds like you will be kept busy and they are really taking action. Your team sounds great.

I agree with above regarding healing. I was told that they didn't like to start chemo any later than 4 weeks post surgery and with complications from a hematoma breaking through my incision it was over 90 days before I was able to have chemo. They want you healed because chemo decreases immune function making it slower to heal.

That said many people heal quickly from a double mastectomy if you aren't having reconstruction. Apart from my complications (caused by terrible surgeon, obesity, age and other conditions) I was surprised by how pain free my mastectomies were. I used plain tylenol day 2 and nothing after that. So, I think that a discussion with the surgeon who should be able to judge what is best for YOU while listening to what you want.

Be good to yourself.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jan 20, 2021 08:07PM - edited Jan 20, 2021 08:09PM by LW422

Hey Astrid and Wrenn. The standard treatment for IBC starts with chemo, then surgery, then radiation. So I assume the surgeon thinks one mastectomy will heal faster than a double, and I'm not sure why. She said the area of "IBC" on my breast is small so there won't be any issue with needing a skin graft or anything. I'm sure they want to get the radiation started ASAP after the surgery heals to clean up any random cancer cells.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 08:17PM LW422 wrote:

SBElizabeth--my MO didn't mention Neulasta; does everyone get that? I did ask about icing my hands and feet and he said there was no "science" to back that up. (sheesh) So I'm thinking he and I might knock heads at some point but we'll see. Thanks for all the tips; I need all the info I can gather at this point.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 08:23PM wrenn wrote:

I didn't know that about the standard treatment. I think it is amazing that I am learning it from a newbie. :-) yay. In that case I would push for what you want. My surgeon said she was relieved that I knew exactly what I wanted. Hopefully your onc will get easier to deal with.

I have heard that Alpha Lipoic Acid helps with hand and foot neuropathy but your team will know best if that is a good idea.

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Jan 20, 2021 08:58PM LW422 wrote:

Wrenn--IBC is one of the most aggressive and fastest growing types of BC, so I guess they want to kill as much of it as possible (and shrink the tumor if there is one) before surgery.

Thanks for the tips; y'all are giving me so many great suggestions. I have so much to learn.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 09:58PM MinusTwo wrote:

LW - Chiming in to emphasize what some others have said.

Yup - you're probably right about the IBC threads. I'll miss you if you move.

Heart test - get an echocardiogram. Acriamycin can damage the heart. I had an Echo every month - 6 weeks during both chemos and also during the year for Herceptin.

If you're going to start chemo the day after your port is installed, tell them to leave the "dangles". That way the infusion center won't have to push for access shortly after port installation. And I assume it will be a "power port". That way they an use for everything - chemo, blood draws, contrast for CT, etc. And yes I liked the PET best of all the exams. But you have to be absolutely still for 40 minutes before the test starts. That's the only time I took 5 mg Xanax because I couldn't sit still.

Neulasta will likely be given depending on your blood work - which you'll have before every infusion. I had it 24 hours after every chemo. And yes - Claritin for some reason helps with bone pain. Not the "D", just the original. You can take the day or two before chemo and several days after.

I can't remember if I posted the chemo link, but I'll send it again.

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 20, 2021 10:01PM MinusTwo wrote:

LW - here are the two links.

Getting through chemo
https://community.breastcancer.org/forum/69/topics...


Getting ready for surgery
https://community.breastcancer.org/forum/91/topics...



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 20, 2021 10:11PM MinusTwo wrote:

LW - please post the link here when you decide where to migrate.

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 20, 2021 10:37PM - edited Jan 20, 2021 10:38PM by LW422

Hi MinusTwo. Thanks for all the help. I don't know why I said "EKG"; I'm have an echocardiogram. I'm stumbling over my own words this week. My MO didn't mention Neulasta; I guess he's saving a few surprises for our next meeting on Feb. 2.

I'm not sure when the port will be installed. I'm seeing appointments pop up like weeds in My Chart. I'm not afraid of the actual PET test; I'm afraid of what it could find. Eeek, I can't deal with any more bad news.

Thanks for the chemo links. I guess I'll buy a few things suggested "just in case." I ordered a large tote bag from Land's End to drag all my necessities to treatment. It's a whole new world!!

I'm not sure where I'll land on the forum. I'll just keep posting here till I have been "staged," and I suppose after the body scans I will know if I'm 3 or 4. I'll probably hang in the chemo threads soon to commiserate since I assume I'll be starting in early February.

Dx 1/12/2021, IDC, Right, 1cm, Grade 3, ER-/PR+, HER2- Dx 1/20/2021, IBC, Right, Stage IIIC Chemotherapy 2/8/2021 Taxol (paclitaxel)
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Jan 20, 2021 10:42PM MinusTwo wrote:

PET tracks 'sugar', so be sure you check if they'll allow you to eat the night before. I wasn't even allowed to read while the contract 'set', because movement means energy is being burned when you turn the pages of a book. PET tracks those cells sparking. I really like the PET, but many doc's don't use them because apparently there can be false positives.

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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