Worried (not diagnosed, need answers)

Anonymous · June 2013

Hi to all,

To make a long story short, around April 9 I began having some itching and swelling in the right breast. It worsened over the period from then until now. It began with itchiness, then swelling, then pain (in that order); the areola and nipple look swollen and the skin changes were: what seemed like "pitting" or small areas of enlargement where the pores are, as well as some slight pinkness to the skin, and dryness, or what has seemed like dryness (flakiness). The left breast felt smoother, less rough. The right breast has been hurting non-stop since that time. It is a needle-type pain and on a scale of 1-10 is a 10 at this point and has been for awhile now.

I went to the Dr. (an Ob/Gyn) who, when asked about the possibility of IBC, said he didn't think it was IBC but he didn't seem certain, and he ordered diagnostic testing; I am in waiting right now for those tests, but they are 2-1/2 weeks out from now.

Since that time, the left breast has now taken on some ominous changes. It has developed a lot of sensitivity, pain like the right breast, and the same swelling and pain underneath the armpit, as well as inversion of the nipple. It is also warmer than the right breast.

- How common is IBC in both breasts?

- Is 2 -1/2 weeks too long to wait, with the symptoms I just mentioned?

- Where else can I seek care in the meantime?

I am new to these boards and need answers fast.

I am so worried and scared. I have a son who is only 16. I am 39. I also have pain in my neck and spine area but had been chalking that up to pain from a bad car accident that I was involved in 5 years ago.

I need all the help I can get now. Thanks in advance,

~sg

Anonymous · June 2013

Your name caught my eye (I'm from Gig Harbor)

I don't have any experience with IBC...but from what I've come across on these boards is that I would insist on a skin biopsy. I seem to recall that IBC is VERY difficult to diagnose , many doctors are not familiar with it and have never seen it personally, and it can present itself in various ways.

I think a skin biopsy is the only way to know for sure. I've read about too many women that were too timid to demand additional tests in fear of "offending" the doc. You have to be your own advocate.

Hopefully somebody with more knowledge on IBS will come along.

Anonymous · June 2013

Hi Susan and thanks for replying. I hope too that some others will come along and reply.

Nice to meet a fellow Washingtonian

A skin biopsy - is that the same as a punch biopsy?

Thanks again for the quick reply!!!

Anonymous · June 2013

Yes, I believe it's the same thing. Had one done on my leg for a suspicious mole.

And rereading your post..personally, I think waiting 2 1/2 weeks is long, but unfortunately standard. It wouldn't hurt to call and explain your pain level and ask to be called if any cancellations or if they could somehow fit you in...you know "the squeaky wheel" thing?

ibcmets · June 2013

Sg,

I have ibc and had about a month wait for my obgyn appt. The following week I was sent for ultrasound and mammo which diagnosed ibc and referred to a surgeon to do the biopsy. The ultrasound should tell more than the mammo & of course the biopsy will confirm diagnosis.

I'm glad your doctor ordered testing. It does seem like you have a lot of the same symptoms I had; but I did not have any pain, just itching, redness, hardness of tissue & what looked like a spider bite.

Hope you find out soon. I did not know anything about ibc when I went through diagnosis. I hope this is just an infection for you.

Terri

Anonymous · June 2013

ibc mets & bon:

I've seen both of your posts around before I joined this site and have to say both of you are strong, intelligent and informative women. Thank you both for your insightful posts! And thank you both for replying to my post.

With the newest symptoms I have, I am very frightened that it is IBC.

I tried to push that fear aside (I just don't want to hear the words) and on Friday had my husband try to make an appointment at Swedish Medical Center for their imaging and hopefully an opinion with an onc, but they said (according to my husband who relayed that to me) that I'd be "better off waiting" for the appointment at radiology on July 5th than to make a new appointment as they said I would be looking at at least another 2 week wait.

My husband is dead-set that nothing is wrong with me; he is irritated every time I bring up the word 'cancer.' I'm not sure how to talk him into seeing that this is something serious.

Bon and IBCMets, you are Stage IV? Is there much hope with Stage IV? Can those that are Stage IV live a normal life? (The information I've been given from several sources says that Stage IV IBC patients typically live only a year or two after diagnosis )

I feel if I get diagnosed with IBC, it may well be stage IV because it's been 12 weeks and counting already, and no one wants to take a second look at me, they keep pushing me off to someone else.

If I do get diagnosed Stage IV, what kind of life am I looking at...? I guess I may have phrased that clumsily but I've been up all night and worried out of my mind. Bon and IBCMets, and anyone else, I'd love to hear more, anything else you might think of to add about what kind of life to expect if I do have IBC and how to make the best of right now especially? Help... Also how do I stop panicking? I guess I really need help with that part right now! I'm so scared I'll never see another worry-free day again... that I'll be leaving my son behind if I do have IBC.

How do you guys do this? You are all so wonderful, brave and strong. I have never seen braver and stronger than you guys (gals!) and applaud you for doing what you do for those of us who may be new to this... thank you sincerely.

~sg

ibcmets · June 2013

Sg,

I know your feelings of worry and panick. I did not hit the panic stage until after I had seen the radiologist. I also had to wait a week or two for mammo & ultrasound, but all testing after that was done very quickly, even biopsy.

I did not know anything about ibc, so I did not have the panic as you have because I just thought I had a bug bite or infection. To try to avoid the panic, do not assume anything at this point, just be persistant in seeing the radiologist and doing a biopsy. You will still be taking care of yourself by getting checked and not assuming the worst scenario.

If you have a breast center near you, call to see if you can get in earlier to a radiologist.

Don't think about being stage IV or any bad scenario at this point. If you are, you will deal with it then.

Let us know about your results and if you have ibc, we will help you deal with it then. Standard treatment is chemo first, surgery & radiation but we are treated on an individual basis due to age, hormonal status (estrogen) and herceptin status. I've been stable even with stage IV on Femara and Zometa for the bones. All my treatment worked very well for me.

Sending you healthy blessings.

Terri

Anonymous · June 2013

Bon,

WOW!!!! The wealth of information you took time to post is just amazing. What an incredible woman you are!!! Thank you so much for helping me...

I think I've heard an IBC fighter mention that everyone around her was moving slowly; she was the only one pushing for treatment (as I am) and that it felt as tho' her house were burning down around her and that everyone else was calmly going on about their business... I really relate to how she described this waiting process when you suspect its IBC (which I obviously do, not only because of the local symptoms I'm having but some issues seem metastatic. Everyone in my immediate family and even the medics and dr's I've talked to have said they're sure it's nothing serious. I am hoping with all my heart that I'm wrong on all of this!!! What can I say, I'm human and I usually want to be right... but not this time. I feel it tho'... a woman knows when something is wrong. And I've never felt this wrong before. Ever. In my life... (And by the way I'm a TBI -traumatic brain injury survivor- in an accident I should have died in or so said the 3 emergency roon doctors... I'm 5 years out from that now but they say my disabilities will remain lifelong. Before that, I was a reporter and freelance writer who got fed up with my career and decided to go into law enforcement and jumped in headfirst to become a cop; went into the academy, etc, then had my accident. Doctors have said I'll never work again and it took me 1-1/2 years to learn to read again (I was a writer, so quite ironic...). For the past 5 years I've been learning to cope with that. Now this... Sometimes I really wonder if God does give us only the burdens we can carry?...) But back to my point...even then I knew I was going to be okay. I don't feel right about this at all, though, and my instincts are usually pretty sharp. I also know my body pretty well.

Bon,

I looked up Dr. Julie Gralow on the web and I like her already; at least what I can tell from what's available on her webpage! She seems positive and upbeat and willing to ready her patients for a fight to live it seems? Tell me I'm far off. Do you know anyone from these forums (or elsewhere) that had IBC and went to her with any success? Please tell me what you know... I am so interested in this doctor and have written her info and contact number in my iPhone notes so that I can make an appointment with her, and I will call her today. Thank you SO MUCH for the information on Dr. Julie Gralow. I'm already impressed but would love to know more about her success rates....etc....?

Also, is Washington a fairly decent state to be diagnosed with IBC in?... I know there are better facilities in Philadelphia (I think?) - Fox Chase? And in Texas, MD Anderson. Would it be sufficient to get treatment here in my home state, or would the odds be against me if I did that...?

3 things I really don't want:

- to be confined to a hospital right away and/or for a long time (i want to be home during treatment)

- to travel far away to somewhere unfamiliar and stay in unfamiliar surroundings which i think would add to my stress levels

- to compromise my health by making the wrong choices.

Any input here would be great... thanks in advance.

Also:

To update everyone, I have my pain management clinic appointment tomorrow at 7:30 a.m. I've never been to a pain clinic and I do not know what to expect. Does anyone have any idea of procedures, etc., that I should expect? Also, do I tell them about my breast problem (I don't know if they can advise or impart any expertise in that matter?)...? I will be checking online tonight to see if I get any responses, I hope someone will let me know what to expect.

And I thought my Mamm/US was scheduled for July 5. It's MONDAY JULY 1 at 2:15 PM. Will all who believe on here in ANY capacity please say a prayer for me? I'm so scared about my Monday appointment and whether or not I'll have to hear "those words." What should I expect on Ultrasound day? My breast is a 10 on a pain scale 1-10. Is a MAMM a really good idea considering the level of pain I'm in? I've heard they hurt even normal, painfree breasts. Can I ask them not to do that, and do only the Ultrasound since the U/S detects IBC better than a mammogram can anyway?...

Also:

Will they be biopsying anything that day? Poking needles into my breasts? What kind of pain should I expect? I'm terrified about the pain too.

Okay, Bon and IBCMets (and anyone else, feel free!) I would love your input and any calming words. (I'm an emotional wreck right now). Bon, IBCMets, you both have been so wonderful and kind-hearted, knowledgeable and generous with your knowledge. Thank you both. Thank you Bon for sharing so much of your personal journey with me. I found it very helpful. All the detail you went into answering my questions was so VERY MUCH appreciated.

You're right, Bon, there's nothing worse than not getting answers when you desperately need them.

Thanks to you both (and Susan!) I've gotten wonderful, insightful and engaging responses as well as thoughtful and kind words. It's people like you who make the world a brighter place to be. I would love to know your thoughts on how I should prepare for the upcoming "apocolypse" (pain dr. which is not too bad I hope) and Diagnosis Day (D-Day) on Monday.

I hope you all have a wonderful evening.

{edited to add, you are all so brave, and are an inspiration to me! all of you!}

~sg

Anonymous · June 2013

PS.

Bon... I LOVE your organizing ideas, thanks so much for sharing with me, and I WILL use them! Thank you for sharing so much of your knowledge ...

I wish for the best, happiest, and longest life for you (((((Bon))))) and (((((Terri))))) and every other IBC survivor on here!

Anonymous · July 2013

((((((Bon)))))),

I won't have time to write too much as I'm just about to turn in to get some sleep (I've been up all night driving myself crazy with worry) because my appointment is today, but I just wanted to write a thank-you for the warm welcome, and for all the WONDERFUL information you've posted!!! You've done such a wonderful job of welcoming me aboard here and with such valuable information. I am happy to call you a friend! Thank you very much for everything. I am really worried about my appointment tomorrow and not sure how to get through it!!!

Are mammo's extremely painful?

I do have Xanax. I am worked up about the appointment. The pain doctors wouldn't prescribe any pain medication until they have my records and it's up to me to get those records to them in the meantime... so would you recommend taking a Xanax before the appointment... ? And what kind of pain level should I expect, and will they give me anything for pain? I sure hope so as I've been in pain for weeks!

Hugs, my friend. Thank you for being here for me.

~sg

Anonymous · July 2013

Bon,

Forgot to ask one other thing... sorry this is so soon before my appointment, it's okay if you can't answer it right away... but I've heard a Fine Needle biopsy is the wrong way to go with cancer, as it multiplies the cancer cells or something like that?....

If they try to do a Fine Needle Biopsy what do I do? Should I not accept it and then go to a breast onc?

Love and Hugs to you Bon!

christmasgirl1960 · July 2013

Seattlegurl, I am saying prayers for you and hope you get only good news. I will be thinking about you all day. Please let us know how it goes.

Anonymous · July 2013

Thank you christmasgirl!

2 hours to go yet 'til my appointment... the waiting alone is nearly driving me up the wall, nevermind worrying over the pain of the mammo, and what they're going to say.

So your words have helped and thank you ((((christmas)))) for the hopes, thoughts & prayers. They are very much appreciated!

~sg

Anonymous · July 2013

Crossing my fingers for you seattlegurrl and sending positive vibes from Gig Harbor.

Anonymous · July 2013

Thank you (((((Susan))))) Big Hugs from just across the Narrows!

((((Bon)))) thank you again for such a detailed reply. I have been to the radiologist today; the pain with the mammogram wasn't so bad like you said...more uncomfortable than anything but not painful (even with my painful breast!) I was sweating that... but it turned out okay. I hope someone else who is reading this but considering NOT having a mammo due to pain changes their mind after reading this, because it wasn't really bad at all and not near what I made it out to be in my mind.

Thank you Bon, for all of the great information.... I am still digesting it all. It's been such a long, long day. When I went to the radiologist I asked him to look at the changes I saw; he said (as did my OB/Gyn) that he's seen IBC and that he didn't think it looked like IBC. He showed me the mammo and showed it looked normal. Then they did the ultrasound which was over before I knew it. He didn't seem overly concerned it was IBC; but when I asked if my scans were 100% normal, he answered no, they were not 100% normal and my doctor would have to read the results to me.

Then, right after the US/Mammo, my OB/Gyn's office called (maybe not even an hour later) requesting an appointment with me for Wednesday at 3:45 pm.

This is where I'm getting worried sick. Does everyone that has a diagnostic mammo get called back so soon? Or are the only ones who get called back to their Doctors found to have something amiss, such as cancer? I really don't know how to make heads or tails of the situation right now. Help!

I go in tomorrow afternoon for that follow-up after the Mammo.

1. Does anyone know if this is a "bad" sign?

2. Please tell me what to expect? I'm a nervous wreck ...what else is new right, I know... *sigh*

HUGS to all my friends and sisters on here, I think you guys are just wonderful. Thank you for being so patient with me and all of my questions! Hope everyone has a good day today.

But if anyone could answer this question, I'd really appreciate the feedback.

~sg

Anonymous · July 2013

What a crazy roller coaster ride you are on! So the mammo was showed no concerns, but the ultrasound does? So "not normal" doesn't necessarily mean cancer.

My doc made an appt to see me to read the results 2 days after my ultrasound (and biopsy) That was before she even knew what the results would be.

So I wouldn't necessarily take that as an ominous sign that something is "wrong".

Still crossing my fingers for you.

Gypsywinter · July 2013

@Bon,
I have read your posts with much interest, as I'm now waiting for my pathology results from my surgical biopsy and skin punch last Tuesday.

Last July 2012 I was diagnosed with early stage invasive lobular carcinoma of my left breast. I had a lumpectomy, then the onco-type test that showed no need for chemo. I had 7 weeks of rad treatments and finished up 10 days before Xmas. In January had a f/u mammo, was normal. Towards the end of March I started having pain in the left breast, some swelling, changes to the texture of my nipple and areola, becoming larger and thickening. Also some redness and warm to the touch, at times hot. At the beginning of June I was hospitalized for a night and day because of acute pain in my left breast and just underneath it. My oncologist, pooed-pooed anything could be wrong...was just due to rad damage. Thankfully I was only a week away from my next f/u mammo....well...right then and there as I waited for the results, I was called in by the radiologist...results were 'abnormal/suspicious'. He sat me down, explained what he was seeing on the films...too much calcification and I think he said 'linear', he didn't like the looks of it. He recommended to my breast surgeon...the surgical biopsy and skin punch. My surgeon also ordered the tumor blood-marker test, that came up clear. A bone scan, no cancer, but some irregularity to some top ribs, that they'll watch, then a MRI that found no evidence of cancer. A few days before my surgical biopsy, thought I'd look around to find out more about this type of biopsy and somehow fell upon the subject of IBC. I have to say scared the hell out of me. Please, O! Please don't let it be that! I'd rather a recurrence of the ILC. Of course, recurrence means mastectomy this time, but I will opt for a double.

My daughter is an RN, who accompanied me to the hospital for the surgical biopsy, I said nothing to her about my worry about possible IBC. The surgical biopsy itself took 2 hours and my surgeon said he removed tissue the size of a 1/2 dollar. After he left, my daughter and I were talking and is when I mentioned my worry about IBC. Is when she told me that my surgeon spoke to her while I was in recovery and told her that I was presenting symptoms of IBC...but that he was pretty sure it was rad damage. Honestly, I don't think my daughter was going to mention the IBC thing to me, if I hadn't brought it up. This caused me more worry...why did my surgeon even bring that up in conversation with my daughter, if he was so sure it was rad damage? When he spoke to me in recovery, not once did he mention IBC to me. So, of course I've been sitting on pins & needles for the past week waiting for the pathology results. I have 7 stitches in the nipple area and on the other side one stitch for the skin punch. My nipple area has stayed in pain since. The pain much the same as before the surgery. Tomorrow I have the stitches out and hopefully will get my pathology results as well.

I am in awe in all that you wrote in this thread, so informative and how much I admire your courage and tenacity you possess. If this should be my DX, I can only hope that I will model you in the same vein. Thank you for all that you wrote, it has helped me more than you can know.

BTW...I was also diagnosed with endometrial cancer in May of 2011. So the last 2 years have been bit of a bumpy ride for me and my loved ones....but I've managed to hang in there. I will hope this time it's just rad damage. If my dx is IBC, I'm sure I'll be revisiting this particular forum again.

Gypsywinter · July 2013

Good Morning Bon!

After my lumpectomy, my left breast was very noticably smaller than my right. It was back in March that I noticed I was then filling that bra cup as well..I could tell it was swollen, that along with the redness and the intermittent stabbing pain began. Somedays worse than others, somedays nothing...still the swelling was there, redness and warm/hot to the touch. I was told this can happen after rad treatments, even many years down the line. I think what bothered me the most was the increase in size of the nipple and areola, the hardening/thickening and coloring it would take on. Some days normal (pink), other days red and still other days turning a cream color, almost white.

I've taken so much ibuprofen since March (works best for me for most conditions anyway), still in recent months and even now hasn't settled down inflammation. The pain I have is not intolerable, it's just mostly always there. If this problem is due to rad damage....I hope this doesn't last forever, but I'll deal with that. Far better to deal with than a recurrence or IBC in my estimation.

I was getting chest scan, abdomen and pelvic ctscans 3 times a year, as ordered by my gyne oncologist as f/u for the endometrial cancer. Since the rad treatments that has been reduced to twice a year. And no, my breast cancer is separate from the endometrial. My mother and her sister both died from breast cancer. Honestly, I wasn't all that surprised by the breast cancer dx...didn't like it, but not surprised. Because of that family history my breast oncologist ordered the BRCA test last August. That wasn't so much for my sake, I already had the dx, but rather for the sake of my 2 daughters. Thankfully I don't carry the mutated gene to pass on. Still my daughters are at higher risk because of maternal family history. I'm 66 yrs old and both of my daughters are in their 40's. I have 2 younger sisters who my oncologist said I should try to encourage to also take the BRCA test. Just because I don't carry the mutated gene, doesn't mean they don't. I gave them the pamphlets and spoke to them about it, but they both said they didn't want to know. Sad in a way, they too have daughters. But that is a personal choice and I can respect that.

Thank you for replying, it's very much appreciated. I do hope your daughter is well now and I still think you are an awesome woman, in that you take the time to write, to support, share your experiences and give very informative information about IBC.

I think what scares me the most...is from watching my mom in her end days, she suffered so. 4 years ago I had to do the same thing again, helpless to ease the suffering...my husband of 43 years died from colon cancer. I can't lie, it does scare me...not the death part, but the process preceding. But I guess it's all part of life and just glad I'm still here and that courageous women like you are still here as well. Bon, I wish you all the very best possible and that your higher power recognizes how important women like you are so important to women like myself. Mostly my motto for myself is...I'll cross each bridge as I get to it. I do my best to practice that.

Giant cyber hugs sent your way!

Anonymous · July 2013

How are you doing Seattlegurl??

Anonymous · July 2013

Hi guys and thanks for asking about me! I so appreciate the prayers and support I've gained here so far (and new friends!)

(((((((Bon)))))))) your story about your daughter just touched my heart! I'm so happy your her mom, she does have such a wonderful mother. I think in truth if it were my son I'd do the same thing, I love him so much. Thank you for sharing such a beautiful story.

At this point, I'm scratching my head for answers.

I went to the Mammo/US both. They said everything was clear, no signs of cancer anywhere... they showed me the normal breast tissue from the Mammo and also said there were some fatty deposits (?) but that's normal, they said. I spoke to one GP who did a breast exam - the third exam I've had so far! And all in less than in a month! And she (and the OB/GYN and radiologist all said there were no clinical signs of IBC. The GP said that there would be more skin symptoms with IBC, as did the OB/Gyn and even the radiologist. She said also, "Is there a chance that breast cancer could escape the Mammo/US, yes there is...and it has happened," but she said it was not likely and that she thought I had fibrocystic breasts. So she asked about the pain, if it was more painful toward menstruation, etc., and I have had that, so I said yes, but told her this is a very different kind of pain. It's more of a stabbing/shooting pain. Does anyone here have fibrocystic breasts and also have shooting/sharp pains??? And only in one breast??? I'm more confused than ever. She did mention an MRI down the line... possibly...

But then I talked to my OB/GYN (they are supposed to be coordinating together whether I have an MRI or not) and he thought it best to start me on low-dose birth-control pills. I wouldn't mind... if it will help??? But he won't be in again until after next week. (He called yesterday with the news, and also asked how my breast pain was and when I said it was still bad, I think that's when he mentioned the low-dose BC.)

Does anyone know if it will help?

But IBC is still very much in the forefront of my mind as I saw on Oprah.com that you cannot detect it with Ultrasound or Mammo... I don't know about MRI, except on Wikipedia I read it's mainly used in under-30 women and I am 39.

So there's no redness or anything to the breast, sometimes what I think is a slight pinkness appears and then goes away... but the breast (right side) hurts severely. One thing my GP noticed is that during the exam, when she touched my back (which was injured in the car accident) I had a very strong pain reaction... and I had told her that it hurts even to touch my skin since my car accident (which it does - some type of neuropathic pain I guess?) She said she thinks I may be experiencing pain differently than most people (and I presume because of the level of pain I'm in elsewhere after my accident that may be true)... but in the breast as well? She said she thinks it is possible. (Edited to clarify that she does think it's possible its fibrocystic breast pain but that the way my brain (which was injured in the car accident with my TBI) sends pain signals is now sending heightened pain when things hurt, and she said, maybe because of that, I'm experiencing more pain with this possible (?) fibrocystic breast than the average woman would.) I hope all that makes sense. But does one experience swelling with a fibrocystic breast as well? I can't seem to find too much information on how fibrocystic changes affect a person... frustrating... if anyone here has ever had that problem, I would love some input on whether or not any changes I'm experiencing could happen with fibrocystic breast disease.

Help. I really do not know how to proceed next. Should I be very worried it's IBC at this point, get checked further? (They do not have an area to biopsy because there's no redness - at least not yet)...

Or should I go with my OB/Gyn's answer which is birth control pills (albeit a low dose)?

Help. I wish there was a Help emoticon, lol.

~sg

PS.

Thanks again (((((EVERYONE)))))) for all of your words of care, concern and your prayers. It means so much to me. I feel like I'm still fighting something right now, I am just praying it's not the worst. And I'm a worrier, so that sure doesn't help! I'm just glad I don't bite my nails, I'd have none right now!

Worried (not diagnosed, need answers)

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