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Topic: Clinically diagnosed but symptoms are going away!

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Feb 2, 2020 08:40AM

JaimeMickie wrote:

Hi everyone,

I had my appt with the dermatologist on Wednesday as my PCP recommended. They did a skin punch biopsy 2-3mm. A couple hours after that I started draining this clear/straw liquid. I had to change my bandaid twice because it saturated through that! Of course after my punch biopsy, I got a call from the second opinion place (Dana Farber) who wanted to see me on Friday. I went to the appt but because of all the fluid that drained out my breast isn't as swollen, barely red, and the skin isn't as thick. I had so many pictures I showed her and of the fluid dripping out. She has never seen lymph fluid come from a punch biopsy site before. The IBC specialist said clinically she is leaning more towards yes it is IBC than no it isn't. Scheduled a mammogram and ultrasound that day. Ultrasound showed prodominent lymph nodes in axillary but all where within the 3mm or 3cm mark that they do with the biggest being 2.3. The said both ultrasound and mammogram are negative. She wants to wait until the skin punch biopsy comes back to see what it says and if negative she wants to do her own that is much larger and in different areas because of how it grows.

Symptoms still: slight redness (hard to see it all because of the bandaid irritation being red from when I was draining), off and on dull ache in breast and armpit, collar bone pain, and I can feel pressure in my neck. Not sure if that's just stress though.

Side note: I'm 23 weeks pregnant, so I can't get the MRI with the dye, or PET scan.

I'm petrified that the skin biopsy will come back negative and that I do truly have IBC. Then I'm also petrified that we do chemo, mastectomy, radiation, based off clinical symptoms I had when I really didn't have IBC. Especially because this will be during my pregnancy and the baby will be born between 32 and 34 weeks.

HELP!

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Feb 2, 2020 10:23AM windingshores wrote:

Just wondering what you mean by "predominant lymph nodes"? Have you gotten any results back from the punch biopsy?

I had a cancer scare during pregnancy which turned out negative. Hope the same is true for you.

Dx 2/2015, DCIS/ILC/IDC, Right, 1cm, Stage IA, Grade 3, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery Lymph node removal; Mastectomy: Right Surgery Mastectomy: Left; Prophylactic mastectomy: Left Hormonal Therapy
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Feb 2, 2020 10:31AM JaimeMickie wrote:

My error. I just reread the ultrasound report. It says "Asymmetry within the lower breast mid to posterior depth, and slightly outer breast middle depth. There is also prominent right axillary lymph nodes. Additional spot compression images show that the asymmetries do not persist, consistent with benign superimposition of breast parenchyma."


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Feb 2, 2020 11:23PM MinusTwo wrote:

Jaimie - sorry for the waiting game. It makes it harder. You can have an ultrasound. They show much more than the mammo. Hmm - in your last post you're quoting an ULS report, but I thought spot compressions are from mammos?

Just wanted to say I went through chemo with a young woman who was pregnant. I don't remember what cocktail she had, but was definite that the infusions would work & not harm the baby.

Try not to get ahead of yourself. As you know, stress & anxiety are NOT good for the baby. I'm not sure if docs would give anti-anxiety meds to PG women, but you can certainly practice deep breathing & yoga and take lots of walks.

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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Feb 4, 2020 06:16PM JaimeMickie wrote:

Thanks for responding! For some reason the ultrasound and the mammogram report are one one document. They did call me back in the room for a specific compression image on one section.

My symptoms have slowly started to return after leaking all that fluid at the punch biopsy site. The IBC specialist NP at the hospital said if it was IBC that the symptoms would return within the week. Just still waiting for the biopsy results. Tomorrow is finally day 7 so hopefully they will be in.

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Feb 4, 2020 10:30PM blue22 wrote:

Hi Jamie,

I really hope it turns out to not be IBC. How soon will you have results of your punch biopsy? What about other biopsies - do you have any type of lump or have they suggested doing a biopsy of the prominent lymph node? What are you IBC symptoms?

You should look on the bright side - that is awesome you are able to go to an IBC specialist, not many people with IBC have that option.

Try to not stress too much - I know that is hard, but remember if you do have IBC you are in the hands of experts. Stressing will only make everything worse for you and your baby.

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/7/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Feb 5, 2020 05:49AM JaimeMickie wrote:

Thank you for responding!

The skin punch biopsy results should be in today-Saturday. Today makes day 7 so I’m hoping they come back today. The IBC specialist has already told me she thinks the skin punch was too small to really get the diagnosis of IBC. It was 2-3mm done by the dermatologist. When it was done I started leaking a lot of lymph fluid and it basically “deflated” my right breast back to normal. The symptoms are starting to come back. I see localized swelling that is now causing a clearly noticeable ridge from normal skin to the thickened skin full of lymph fluid.

No lumps, no masses. I’m the lymph nodes under the right arm are all within normal size limit. 1.3 cm or mm (I can’t remember) was the biggest and it’s below 3 so the radiologist doing the ultrasound wasn’t concerned.

My symptoms are: slight redness, slight enlarged right breast, skin thickening, you can see the ridge where the fluid is being trapped compared to the normal thickness skin, and my right collar bone now my whole right shoulder hurts. Hurts more at the end of the day after using it all day.

The specialist said IBC is a clinical diagnosis and sometimes the skin punch biopsy comes back negative when in fact you do have it. Depending on where the punch is and the way the cancer grows they may miss it. If so, how would they be able to determine the hormone response? I have another appt with Dana Farber tomorrow (Thursday).

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Feb 5, 2020 12:28PM vlnrph wrote:

Wow girl you are having quite a time! Scroll down the list of topics here and you will see a forum devoted to IBC. I don’t know how active it is so you may want to send out a few private messages in order to get some quick responses. It’s a good thing you are aware of your body and had photos to show the specialist.

Hormonal receptors can only be detected if the pathologist has a proper sample with which to work. Breast cancer is probably not a thing that derms see very often - I can understand why the Dana Farber doctor would want to send additional tissue to their lab for testing.

As far as the pregnancy goes, no one wants to deliver a premie at 7 months however neonatology is very advanced these days and they can prep you, give the baby lung surfactant to assist breathing, etc. Much better than when my now 32 yr old architect was born 8 weeks early...

IDC too! 🎻💊👪🐩 🇫🇮 🌹🦋 Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
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Feb 7, 2020 01:26AM blue22 wrote:

Hi Jamie,

Any updates? Have you heard back regarding the punch biopsy?

I hope you have good news!

Dx 1/2019, IBC, Left, 6cm+, Stage IIIB, Grade 3, ER+/PR+, HER2- (FISH) Chemotherapy 2/14/2019 Abraxane (albumin-bound or nab-paclitaxel), Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxol (paclitaxel) Surgery 7/29/2019 Lumpectomy: Right; Lymph node removal: Underarm/Axillary; Mastectomy: Left Dx 7/30/2019, IDC/IBC, Left, 6cm+, Stage IIIC, Grade 3, 4/14 nodes, ER+/PR+, HER2+ (IHC) Dx 8/2019, DCIS, Right, <1cm, Stage 0, ER+/PR+ Radiation Therapy 10/7/2019 Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Chemotherapy Xeloda (capecitabine)
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Feb 9, 2020 09:47AM JaimeMickie wrote:

Not yet! The dermatology office called me on Friday and said they have a back up at the lab so she is hoping to call on Tuesday because she’s off on Monday. I’m going to call them on Monday, I’m not waiting! Dana Farber did their own skin punch biopsy I think she said 6-8mm. They did that on Thursday and will have the results on Monday if negative or positive but might not know the hormone receptors until Tuesday-Wednesday if positive.

Symptoms still haven’t really reappeared. Dana Farber has now changed for a high suspicion to a low suspicion. Thankfully!!! But just waiting for the results to celebrate.

Thanks for checking in!

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