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Topic: for ibc is it best to do on red spot of breast?

Forum: Not Diagnosed but Worried —

Meet others worried about developing breast cancer for the first time. PLEASE DO NOT POST PICTURES OF YOUR SYMPTOMS. Comparing notes, symptoms, or characteristics is not helpful here, as only medical professionals can accurately evaluate and assess your individual situation.

Posted on: Aug 9, 2018 09:36PM

Pisces916 wrote:

I have had a red spot on my left breast for over a month and have taken antibiotics for 2 weeks with no response. Last week my lymph nodes under my arms have gotten very swollen and hurt! My left breast is so swollen I can no longer wear a bra. Both my mammogram and ultrasound show nothing. I plan to get a biopsy next. Is it a safe bet to biopsy the red spot or can the cancer lurk elsewhere

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Aug 10, 2018 01:28AM ispy wrote:

Hi Pisces I'm sure someone with more experience in IBC will jump in here. Have you seen a breast surgeon? Have they told you they plan to do a biopsy? If so, they probably have an idea where they want to biopsy. They will probably biopsy the red spot, since that is where the problem is. As far as I know they just take a little bit of skin right in the office, and it is not that painful. I hope it is not cancer, but if it is they would find it in the skin of the swollen breast.

Does that help? Did the doctor tell you they're doing a biopsy?

Dx 9/2/2014, DCIS, Right, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 9/2/2014 Lumpectomy: Right Dx 7/7/2015, LCIS, Left Surgery 7/7/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/9/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery
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Aug 10, 2018 06:25AM Sjacobs146 wrote:

My understanding is that IBC gets worse very rapidly (like in hours or days), so I wouldn't worry overmuch about that. I would go see a breast specialist if you haven't already. GPs don't know everything

Dx 8/26/2014, IDC, Right, 1cm, Stage IIA, Grade 2, 1/3 nodes, ER+/PR+, HER2- Surgery 9/22/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 10/23/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 1/25/2015 Breast Hormonal Therapy 4/16/2015 Arimidex (anastrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Aug 10, 2018 12:47PM Pisces916 wrote:

Thank you Ispy. I have only seen a Physician Assistant. I pushed for the biopsy because I displayed several signs for ibc which were: inverted nupple, ridges, swollen breast, swollen lymph nodes and the red spot that has not gone away with antibiotics. I should be scheduled for a biopsy within in the next couple of days, I have yet to see a doctor. I’m hoping it is a breast specialist who does the biopsy. I plan to ask the appointment coordinator if I’m seeing a specialist or is it another P.A. I’m glad to hear the biopsy won’t hurt. I am getting a skin punch biopsy which I’ve read is the best one to have for ibc,

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Aug 10, 2018 12:52PM Pisces916 wrote:

I hope you are right and this isn’t ibc. I have been keeping an eye on the red spot and even drew with a pen an outline around it. It hasnot grown any larger for the past month so my hope is that it is really just cellulitis and I just need a different antibiotic to fight it off. Thank you for your response. Will keep you updated on the biopsy.

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Aug 10, 2018 01:20PM ispy wrote:

I think you're correct to be concerned. Doctors understand "ruling things out". You just need IBC to be ruled out. If you use that language they generally respond well. I think either a breast surgeon or a dermatologist can do the punch biopsy. The PA for my plastic surgeon was great, and I would trust her with things. I've never met another PA I would trust to do a punch biopsy on possible IBC. You're the patient, so you're the one paying (even if it is your insurance company). Just be politely insistent: "I would prefer that a surgeon do the biopsy." If they try to explain how it is okay for the PA to do it, etc. etc., just say: "I understand. I would prefer that a surgeon do the biopsy." Don't apologize. It is your life.

I need a punch biopsy right now, and I didn't like the PA that offered to do it -- so I said no. The thing is, if they biopsy the wrong spot you'll get a false negative. If you're going to do this, get it done right.

Please make sure to update so we know how it's going!

Dx 9/2/2014, DCIS, Right, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 9/2/2014 Lumpectomy: Right Dx 7/7/2015, LCIS, Left Surgery 7/7/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/9/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery
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Aug 10, 2018 04:02PM LoriCA wrote:

I had three punch biopsies done in different locations to confirm my IBC, and they were done by a surgeon. IBC grows in sheets, not a lump, so it's not quite as easy for them to pinpoint exactly where to biopsy. If they strongly suspect IBC they want to confirm as quickly as possible.

I don't want to worry you unnecessarily, many people are aware that IBC gets worse very quickly and say that if it isn't any worse after a couple weeks don't worry, and usually that's fine because IBC is very rare so if redness or rash is the only symptom it's probably not IBC. Mine started as a very minor rash right along the edge of my bra that lasted for weeks & I thought it was just a sweat rash so I didn't worry. It wasn't until my breast swelled to twice it's size and all of the other signs presented literally overnight (orange peel, skin thickening, heat, swollen nodes under arm and above collar, and large purple "bruise" from neck to waist on that side) that it steadily got worse by the hour. If no response to antibiotics and your lymph nodes and breast are now swollen and painful, it's a good idea to get it checked out further for peace of mind if nothing else. Wishing you the best and that it's not IBC.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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Aug 11, 2018 02:50AM Pisces916 wrote:

Thank you for your reply LoriCa. I was wondering how the surgeon knew where to biopsy? Did they do an MRI first to determine the best spots to biopsy? Also was wondering if you had a skin punch biopsy? I read that is best to get this type of biopsy. I'm guessing they will do a biopsy on the red spot and maybe do my swollen lymph nodes under my arms. My red spot has not gotten larger but my lymph nodes have swollen to a size of a golf ball and appear dimpled. Appreciate all the information you can give me.

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Aug 11, 2018 02:59AM Pisces916 wrote:

Thank you fro your advic ispy. You are right there is a risk that I can get a false negative if not done in the right spot. I plan on calling my insurance company Monday to try to request a breast cancer specialist or surgeon to do the procedure. I will try to explain to them that this is a rare cancer and if not properly done it can give me a false negative. Hopefully, they will work with me on this. Fingers crossed. It's so nice to have this forum and get advice from people who understand. Thank you all so much for responding and advising me. Sending big hugs and positive thoughts to you all!

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Aug 11, 2018 12:04PM ispy wrote:

Pisces I wouldn't think your insurance company has anything to do with it, other than approving the referral, which it sounds like you already have. The P.A. that you saw -- was that in internal medicine/family practice? Where is the PA sending you for the biopsy? As of right now, what kind of clinic/office are you going to for the biopsy?

Dx 9/2/2014, DCIS, Right, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 9/2/2014 Lumpectomy: Right Dx 7/7/2015, LCIS, Left Surgery 7/7/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/9/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery
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Aug 11, 2018 01:54PM LoriCA wrote:

Pisces yes a skin punch biopsy is best for IBC because there is typically skin involvement (which causes the inflammation). IBC is a clinical diagnosis, the pathological diagnosis would still be IDC or ILC. My pathology report did state that the cancer was sheet-like, which further supported the IBC diagnosis.

As to how they determine the exact location in normal circumstances, I'm really not sure. My case was highly unusual with how quickly it spread and by the time they did the biopsy the primary tumor had started to ulcerate, so they could not do the biopsy where the redness originated. They did two in my right breast and one in my left because by then there were signs that it had already started spreading into my left breast. Please don't let that scare you, I've been told that no one ever saw IBC spread as quickly as mine did so I'm a highly unusual case. If it is IBC, according to my MO it can grow without any symptoms for years (and undetected on mammograms), it's not like they can or need to biopsy a specific lump to find it like with other BCs because it's likely that it has already infiltrated much of the skin of that breast. Hopefully someone else with "normal" IBC will chime in with their biopsy experience.

I'm always hesitant to talk about it here because 98% of the time a person's symptoms are NOT IBC and I never want someone to worry needlessly (and I am an example worse-case scenario). I only want to say that if it's not responding to the antibiotics and your symptoms are getting worse (swollen breast and lymph nodes, etc) you should definitely keep pushing to see what's causing it. Hopefully it is just something minor.

Lori

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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23 hours ago Pisces916 wrote:

Thank you Lori for sharing your story. I'm so sorry to hear it moved so quickly. I'm doing my best to keep calm and just try to get informed. Your story has helped me better understand ibc because I didn't realize that ibc infiltrated the skin like that. I first noticed the red spot July 18th and it has grown just slightly larger. It was at first a brighter pink but has since then dulled in color. My swollen lymph nodes that ache and the ridges that have appeared near the red spot has concerned me. It has not yet been a full month. Hoping I get the biopsy soon and pray that I don't have this and I can rule it out. Sending you big hugs and again thank you for sharing.

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23 hours ago Pisces916 wrote:

Hi Ispy. My PA is from a family practice office. I haven't been able to make an appointment yet. I was told to contact the office in next couple of days to schedule biopsy appointment. I plan to call tomorrow and find out what clinic I will be going to for the biopsy and will request a breast specialist. I also plan to call my insurance company and see what I can do to get a specialist to do the procedure. Fingers crossed I get a doctor. Thanks for checking in. I'll keep you posted once I get more information. Thanks everybody for you helpl!

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15 hours ago ispy wrote:

Hi Pisces!

Well, I can tell you 99% that as long as family practice refers you to a breast oncological surgeon, which they should, it is up to you who at that practice does the biopsy (whether a PA or a surgeon). The insurance company has no say in which provider at a particular practice does the biopsy. And family practice is going to refer you to a breast oncological surgeon of some type, or they might want to refer you to a dermatologist. If I were you I would go for the breast surgeon office. But again, as long as your family doctor refers you to the right place, your insurance company has nothing to do with it (I speak from experience in insurance and as a patient!). I just don't want you to confuse the issue or waste your time making calls to insurance. Just concentrate on getting the proper referral from your family practice office. Depending on your insurance, you might have to wait for okay to go see a specialist of any kind, but which provider you see at that office is up to you. Keep us posted!

Dx 9/2/2014, DCIS, Right, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 9/2/2014 Lumpectomy: Right Dx 7/7/2015, LCIS, Left Surgery 7/7/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/9/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery
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15 hours ago WinningSoFar wrote:

I've had at least six biopsies and the breast surgeon or the radiologist (usually the head of radiology because the breast surgeon requested him/her) did all the biopsies. I wasn't aware that PA's even did biopsies. Biopsies are tricky--I'd hold out for the surgeon or radiologist do it--and even they miss things occasionally.

Surgery 6/30/1999 Lumpectomy: Right Dx 7/1999, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Radiation Therapy 7/29/1999 Whole-breast: Breast Surgery 6/30/2000 Prophylactic ovary removal Dx 9/26/2011, IBC, Right, 4cm, Stage IV, Grade 3, 0/5 nodes, ER-/PR-, HER2- Targeted Therapy 10/31/2011 Avastin (bevacizumab) Surgery 5/4/2012 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Radiation Therapy 4/14/2013 External: Bone Chemotherapy 3/1/2014 Abraxane (albumin-bound or nab-paclitaxel) Surgery 12/10/2014 Reconstruction (left); Reconstruction (right)
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10 hours ago ispy wrote:

WinningSoFar she’s talking about a skin biopsy, called a punch biopsy, that can be done right in the office. It’s not the radiologist type of biopsy (ultrasound guided or stereotactic — I’ve had six of those too!) But im with you — aPA offered to do mine and I said no.

Dx 9/2/2014, DCIS, Right, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 9/2/2014 Lumpectomy: Right Dx 7/7/2015, LCIS, Left Surgery 7/7/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/9/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery
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10 hours ago LoriCA wrote:

There are several types of skin biopsies, the punch is most invasive because it uses a circular cutter that also takes out some of the tissue beneath the skin and it typically requires a stitch or two to close the hole. Very different from the kind of skin biopsy my husband had for his skin cancer when just a small piece of skin was shaved off.

IBC Stage IV de novo - presented in right breast, within days spread into left breast, skin, chest wall, metastasized into brachial plexus (lost complete use of right arm for several months), liver and throughout skeleton. Dx 9/8/2017, IBC, Both breasts, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2+ Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab)
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4 hours ago - edited 4 hours ago by Pisces916

Thank you everybody for your help. I went to the office to try to make the biopsy appointment and it turns out they dropped the ball. I was told they would send it Wed after my appt but instead when I came in person today to the office because they didn't answer any calls, I was given a number and told to call the diagnostic center. I called the diagnostic center and they faxed it as I was on the phone with the center. I'm very frustrated with the delays. Same thing happened when trying to schedule mammogram. I was told by diagnostic center they don't do skin punch biopsies and I need to be referred else where. I asked where and they said they didn't know. Talked to the appt coordinator and told her I need to be referred and she asked me if I knew where to refer myself because she doesn't know where and never heard of that biopsy. I was stunned and panicked. All of your responses are helping immensely. I am dealing with an office that is clueless. I was told to call another place. Called it and was told they don't do this either. Going back again tomorrow and requesting to speak to a doctor . I live near UC Davies Medical Center and will check to see if I can get referred to a specialist there. Fingers crossed! Thanks again for all your help and information

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2 hours ago ispy wrote:

OMG yes get thee to UC Davis. That's what you meant, right? Davis? As in Davis, CA? You might need to check with your insurance to make sure they're in your network. I hope they are. That is one of the best places you can be in California.

You want to go here: https://www.ucdmc.ucdavis.edu/cancer/about/index.h...

Check with your insurance that they are in network (or call UC Davis Comprehensive Cancer Center directly). Assuming they are, tell your clueless family practice that you need a referral to a BREAST SURGEON at UC Davis.

You'll get this back on track fast!

Dx 9/2/2014, DCIS, Right, <1cm, Stage 0, Grade 1, ER+/PR+ Surgery 9/2/2014 Lumpectomy: Right Dx 7/7/2015, LCIS, Left Surgery 7/7/2015 Prophylactic mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 10/9/2015 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Surgery

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