We are 214,045 members in 82 forums discussing 152,597 topics.

Help with Abbreviations

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

Log in to post a reply

Page 1 of 2 (36 results)

Posts 1 - 30 (36 total)

Log in to post a reply

Aug 10, 2018 01:28AM I_Spy 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
Log in to post a reply

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)
Log in to post a reply

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,

Log in to post a reply

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.

Log in to post a reply

Aug 10, 2018 01:20PM I_Spy 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
Log in to post a reply

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+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel)
Log in to post a reply

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.

Log in to post a reply

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!

Log in to post a reply

Aug 11, 2018 12:04PM I_Spy 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
Log in to post a reply

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+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel)
Log in to post a reply

Aug 13, 2018 03:42AM 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.

Log in to post a reply

Aug 13, 2018 03:51AM 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!

Log in to post a reply

Aug 13, 2018 11:42AM I_Spy 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
Log in to post a reply

Aug 13, 2018 12:03PM 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.

Dx 7/1999, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 0/4 nodes, ER+/PR+, HER2- Surgery 7/1/1999 Lumpectomy: Right Radiation Therapy 7/30/1999 Whole-breast: Breast Surgery 7/1/2000 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 5/5/2012 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 12/11/2014 Reconstruction (left); Reconstruction (right)
Log in to post a reply

Aug 13, 2018 04:21PM I_Spy 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
Log in to post a reply

Aug 13, 2018 04:44PM 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+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel)
Log in to post a reply

Aug 13, 2018 10:59PM - edited Aug 13, 2018 11:03PM 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

Log in to post a reply

Aug 14, 2018 01:01AM I_Spy 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
Log in to post a reply

Aug 15, 2018 03:14PM Pisces916 wrote:

Thank you for the link Ispy. It turns out sadly my insurance isn't accepted at UC Davis. I have been told that I will have a dermatologist do the punch biopsy and that they aren't able to refer me to a breast surgeon unless I was diagnosed with cancer. I have heard of false negatives with biopsies and am hoping the dermatologist is familiar with ibc and will do it properly. I have swollen lymph nodes and am wondering if it is safe to do a punch biopsy on the swollen lymph node under the arm? Lymph nodes are the size of a pea and if damaged can lead to lymphedema. I'm thinking it would be safer to do a fine needle biopsy. Can anyone share what type of biopsy they received on lymph node?

Log in to post a reply

Aug 15, 2018 04:00PM I_Spy wrote:

A punch biopsy, as far as I know, is only done on skin. The dermatologist is a skin expert -- so yes, they will do it right. Don't worry about that.

The lymph node would not be done by the dermatologist and would be farther along in the process I think.

It sucks that you can't go to UC Davis. Me either. Now I'm thinking you should call your insurance, because "you can't go to a breast surgeon unless you're diagnosed with cancer" is ridiculous. That is the person who does the diagnosing! It's like saying: "you can't go to a dentist unless you're diagnosed with a cavity." Or: "You can't go to an OB/GYN unless you're diagnosed with cervical cancer." What is wrong with these people?

I hope to all that is good that you have NO cancer anywhere in your body. But your symptoms are concerning and you need to see the correct specialist. The good news is that a dermatologist will be smart enough to see what is going on, do the punch biopsy, and then refer you wherever he/she feels like you should go. So when do you see the dermatologist?

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
Log in to post a reply

Aug 17, 2018 03:47PM Pisces916 wrote:

I totally agree Ipsy. My insurance has denied the punch biopsy so I requested a MRI. Thankfully they approved it. I am praying that the MRI rules out cancer. I'm guessing that a MRI might be the best way to diagnose or rule it out. I am wondering since ibc is rare if a radiologist will be able to see it on a MRI and/or if ibc appears like other cancers on a mri?

Please pardon my delayed response. I have found myself sinking into a depression and have had trouble sleeping and been having painful headaches that I think are from stress. I have not been diagnosed but nevertheless am terrified that it is a possibility. Any advice on how to cope is greatly appreciated.

Log in to post a reply

Aug 17, 2018 05:18PM I_Spy wrote:

Oh Pisces I hate that you're going through this. Your doctor and insurance are acting inexplicably, -- as in I just don't understand what is wrong with them.

Answer these questions for me:

1. What insurance do you have, and is it a PPO or HMO?

2. What happened to seeing the dermatologist?

3. What is a "diagnostic center" that you mentioned in the earlier posts?

4. Is your breast still so swollen you can't fit it in your bra? Has the swelling gotten better or worse? Is your breast very red? What does the skin look like?

5. You didn't see a family MD, just the PA, right? Can you get in to see the actual MD? Either way, what does the PA seem to think it is?

I have to go get an MRI of my back right now (if it's not one thing it's another), but I will check for your answers when I get back.

Please don't be depressed (well, okay, eat ice cream) -- get determined instead. This is just the price we pay for being alive: constant alertness, constant willingness to fight back.

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
Log in to post a reply

Aug 17, 2018 08:26PM I_Spy wrote:

Ok I'm home from the MRI.... where is Pisces... once you answer those questions I will have a whole heap of advice :)

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
Log in to post a reply

Aug 19, 2018 03:05AM Pisces916 wrote:

Hi Ispy. Pardon delay. I have HMO. My insurance denied the punch biopsy from the dermatologist and I don't know why. The diagnostic place is Sutter Diagnostic Hospital. My breast is the same, not anymore swollen and I had a bright pink patch of skin that has turned into a faded pink. The skin is smooth. There is no texture. I went to the ER the other day because I had an incredible painful headache with some numbing on my skin and I got to see an actual doctor. Woohoo! I had him a look at my swollen lymph nodes which were under my arm and have alarmed me the most because I read that it could indicate stage 4 cancer. The ER doctor told me that my lymph nodes were soft and movable and that when a person has cancer the lymph nodes are hard and immovable. This alleviated a lot of my stress. I later learned that I had a stress headache and that my shallow breathing which was from anxiety led to the tingling and numbness. I laugh now thinking how I worried myself sick and I am now trying to chill out and stick to comedies on Netflix instead of reading about cancer. From what I have been reading the breast MRI would be the best diagnostic tool. From there if they see anything suspicious on the MRI they will have an idea where to biopsy. So I am happy with having an MRI. How did your MRI go?

Log in to post a reply

Aug 19, 2018 11:12AM LoriCA wrote:

Pisces that's great news because if the swelIing is down and the red patch has faded you can be 99.9% certain it is not IBC. If it were IBC it would just continue to get worse. Hopefully the MRI will give you peace of mind and help determine what caused your symptoms.

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+ (IHC) Chemotherapy 9/26/2017 Taxol (paclitaxel) Targeted Therapy 2/6/2018 Perjeta (pertuzumab) Targeted Therapy 2/6/2018 Herceptin (trastuzumab) Chemotherapy 11/26/2018 Taxol (paclitaxel)
Log in to post a reply

Aug 19, 2018 11:30AM I_Spy wrote:

Hi Pisces! So glad to hear from you, and I hope your headache is feeling better. I'm so glad you got to see an actual doctor to feel your lymph nodes and tell you they were fine! Yes, we can worry ourselves into a panic attack sometimes.

It's funny because I think an MRI is more expensive than a bunch biopsy, so that is weird the insurance company is going that way. However, an MRI is MUCH less invasive than a biopsy, so that part is good!

The definitive diagnosis for IBC is a punch biopsy. That is the only way to see what is going on in the skin. But it never hurts to get an MRI, and it sounds like your symptoms are leveling out if not even improving a little! So yay for MRI!

Now that I know what Sutter is, I think I understand your earlier post. So here is the deal: Sounds like they referred you to a Sutter Diagnostic Imaging Center, which does Xrays, Mammograms, and MRI's and nothing else. So the imaging center would've been confused when you asked about a biopsy. Your nurse coordinator might've been willing to help, but didn't know where you needed a referral to (not reassuring, but okay I understand now). If asked in the future, you want to see a breast oncological surgeon; that is who does the punch biopsy, orders additional tests likes MRIs, and can diagnose breast cancer. Here is an example of a breast surgeon (we abbreviate that on this site as "bs"), and she is associated with Sutter Health and so probably takes your insurance: https://www.sutterhealth.org/find-doctor/dr-lisa-m...

I think you can get the MRI and by then your symptoms will have made themselves known for sure. If you need to see someone in the future, that is the type of person you want to see.

As for me, I hurt my back, and so I got an MRI of my low back on Friday. I've had many MRIs before (even a breast MRI), so I'm used to them. I love how they always say: "Are you claustrophobic?" And I'm like: "Not unless you put me in a small narrow confined space like a coffin and tell me I can't move," hahaha. This machine was really small, and I'm 5'11", so the tech was like: "I'm not sure if you'll fit, we'll have to try it," and I'm like great. My arms were resting against the inside the whole time! I'll get the results next week.

I'm not sure if you've had an MRI before, but the breast MRI was especially difficult for me, even though you go in feet first. Something to do with the position of your arms and not being able to move. If you need to, do what I do: clarify with the MRI tech ahead of time, and just say: "If I push the button and ask you to take me out of here, will you do it?" They will always say yes. It just helps to hear them say it! Then, realize that the MRI is doing NOTHING to you, and in fact is less damaging than an Xray. Sometimes it helps to pretend you're in a video game haha because of the sounds of the magnets adjusting in the machine. Other times I do yoga breathing and think about grocery lists, to-do lists, dreams and goals. I start out nervous and end up falling asleep!

Finally, realize that no one on here, even one who has "doctor" in their signature line, has seen your symptoms -- so they can't tell you what is going on with you (and there is a doctor here who is a retired radiologist; he's not a breast surgeon or an oncologist, so take his advice the same way you take mine: with a grain of salt). I think it is GREAT NEWS that your symptoms are leveling out or even improving, and I think that means there is nothing to worry about! After your MRI, if your symptoms haven't improved enough, I can help you get to see the right specialist (I've worked in insurance for years, plus I've had to navigate HMO's, PPO's, etc. for years as a patient).

In any event, regardless of whether you had an infection that is clearing up after the antibiotics (I know from experience it can take a while for the skin to recover after being very red) or we need to keep pursuing a diagnosis, it is important to watch Friends! That is my prescription, and I'm qualified to give it to you. Start at the beginning and bingewatch (if you get up to 20 times from beginning to end you might need to watch something else, but then.... no just start over). If things feel really desperate, go to youtube and search "Friends bloopers," especially "Friends bloopers pivot" to see my favorite blooper. Watching the actors dissolve into hysterics brightens even the worst mood!

And know that you have friends here who have been through every possible scenario, including being afraid and it turns out it was nothing. We will be here for you from beginning to end.

p.s. I lived in Davis when I was little and my mother worked in the library at UC Davis. I went to North Davis Elementary School for Kindergarten and First Grade! :)

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
Log in to post a reply

Aug 20, 2018 09:45PM Pisces916 wrote:

Hi Ispy thanks so much for your reply. It is nice to know that you worked in insurance and can navigate. Greatly appreciate your offer to help me with this. I get my MRI tomorrow and plan to take something for possible claustrophobia. I've read that the MRI is very sensitive to picking up anything suspicious and may even have false positives. I believe that if they see anything suspicious they would then follow up with a biopsy and the MRI image would help locate where to biopsy. Fingers crossed they find nothing at all and I can sigh a sign of relief and can stop worrying. lol This is my hope. I am happy to see that the pink spot has faded and things have not gotten worse and since my lymph nodes are not hard and do not indicate cancer I am able to keep somewhat sane and not worry so much. I think most of the worry was from my medical group delaying/denying tests. I had to push them to take me seriously and I showed up or called nearly everyday for a week to finally get them to order a MRI. Now that I know I will finally get an MRI the stress has diffused. Since then I have read what foods to eat to fight cancer and what foods to stay away from. I have changed my diet this last month. I read the two things cancer love is sugar and alcohol. I have been drinking apple cider vinegar in water and add lemon to water and I cut out alcohol and sugar which is tough because I have a sweet tooth. Also, I started taking vitamin C everyday. I think that no matter what the outcome, I have been scared straight into cleaning up my diet and have been exercising a bit more. I like your prescription of binge watching Friends! That's a great idea! Never thought to watch Friends bloopers but I am planning to do that tonight! I love that TV show. Hoping the cast gets back together and they make more friends episodes. Hope your back is feeling better and that you start healing up. I'm really grateful to have this forum and be able to connect with others. This has helped tremendously to have the support. Thanks again for you help. Very much appreciated!:)

Log in to post a reply

Aug 20, 2018 11:38PM I_Spy wrote:

Make sure to look up the Friends blooper with "pivot", where Ross, Rachel, and Chandler are trying to get the couch up the stairs -- and the actors can't stop laughing. So funny. Well we will be with you in your pocket tomorrow for your MRI!

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
Log in to post a reply

Aug 23, 2018 12:18AM I_Spy wrote:

Hi Pisces thinking of you.....how did your MRI go?

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
Log in to post a reply

Aug 23, 2018 01:56AM Pisces916 wrote:

Hi Ispy. The MRI went smoothly. I had something to help with the anxiety and then they had me face down and I put in some earplugs in and I was a bit drowsy so I was overall relaxed. I was told they will have results within the next 2-3 days. I made an appt with my PA and the soonest is Monday, so I have an appt then, but I think I might call the imaging place and try to get info on the MRI directly from them. I enjoyed watching Friends Bloopers last night. You're right the sofa scene "Pivot" was funny! I had a great laugh and it was a great way to relax. Thanks! I have my fingers crossed that they find nothing. I do know that MRI's have false positives so I am mentally prepared for that. Overall I am feeling better just knowing that I had the MRI. Truly appreciate all you advice and help Ispy. It was really helpful to have someone to confide in about all of this. As soon as I find out I will let ya know. I am definitely going to call them Friday. Hopefully the imaging place can tell me over the phone. I will know soon thank goodness.

Page 1 of 2 (36 results)