Anxiously waiting...

Angel874 · December 2011

I found this wonderful forum a week ago and have been reading and digesting as much as I could while waiting for my mammogram and ultrasound today.

Brief intro: Started approximately 4-5 weeks ago with bruises on just my left breast. Didn't think too much about it. The pain started 3-4 weeks ago. Then about 2 weeks ago, swelling. Saw my nurse practitioner who immediately brought the doc in, said he didn't feel anything but let's do the tests to make sure. The NP is who mentioned IBC, but the doctor blew her off. I knew about IBC before this, as I do medical transcription, and know how dangerous it is. Today was the mammogram and ultrasound. The tech stated "There is definitely something different about the left breast." This was on mammogram, not even the ultrasound. I know that these tend to come back negative for IBC, so I have been debating about whether or not to just make an appt with a breast surgeon myself. I still have pain and swelling, but the bruises have now disappeared. No rash/discoloration and no nipple inversion. The nodes under the arm and upper chest area are also sore.

Do you think I'm jumping the gun by seeing the breast surgeon or am I just rushing things?

I want to thank you all in advance for taking the time to read this.

Angie

CLC · December 2011

I have no experience with IBC, but I wanted to offer this little bit of info... I had some microcalcifications and it was decided that they were not cancer and I should follow up in 6 months to see if there were changes.

I immediately made an appointment with a bs. He saw me and said, yes, we wait 6 months. It seemed like I might have been silly to go see him then. However, 6 months later, we found adh and he did an excision. Then a year later, we found dcis and he did the mastectomy.

All throughout, I was grateful that I already had a relationship established with the bs...

So...that was my experience with "jumping the gun," as it were...

If you will sleep better at night, then go see that bs. Personally, it sounds to me like it is warranted.

Best of luck to you...

Angel874 · December 2011

Thank you, CLC. I think I just might make the appt and get a load of this stress off of me. And yes, I'm not sleeping well at all!

ibcmets · December 2011

Angie,

I'm sorry you are going through this, especially when no one knows what it is yet. I have ibc and your symptoms seem different than mine (bug bite rash, dramatic swelling of R-breast, orange like dimpling, warm to the touch, inverted nipple & itching) I had classic symtoms. You may have some kind of infection but it is good to have someone check this out. I did not have bruising.

Hope they find out quickly whats up.

Terri

mrsnjband · December 2011

Angie, everyones sympton's may vary so I would error on the side of caution and go see a breast specialist. NJ

Angel874 · December 2011

Well, called today to the 2 nearest breast surgeons in my area and of course, they are closed today and Monday. Will now have to wait until Tuesday...

Happy New Year everyone! Thank you for your replies, it is wonderful to have someone who cares listen!

Nel138281 · December 2011

Angel874,

Tuesday seems like an eternity, but it will come quickly and nothing awful will happen in the meantime. Even with IBC, there is time. You don't want to wait months for an appt, or DX, but a few days or a week or so will be OK. In the process of transferring my care from a local and small hospital, into Boston it took about 2 weeks to get an appointment. My oncologist told me not to worry, and it took about another two weeks to get the rest of the tests in and a treatment plan in place. All the time my onc told me not to worry, we were moving, not dillydallying etc.

So breathe, find activitie to enjoy this weekend. It willbe ok and youu will get the info you need soon.

Gentle Hugs

Nel

ateepay · January 2012

Hi Angie,

You are doing the right thing being deligent about your own care. Take a breath of 2012 and hold on until Tuesday. Praying it is not IBC, but hoping they will RULE OUT IBC first.

Patti Bradfield

www.eraseibc.com

dogeyed · January 2012

Yah, I agree with all the others, go see a breast cancer doc, I'm glad you're planning to call one tomorrow. They should be able to get you in fairly quickly. Actually, your regular doc SHOULD have immediately picked up the phone and scheduled you to see one, since you had a suspicious-looking mammo, plus pain and swelling. That's what happened to me. I went to Urgent Care, they gave me some antibiotics in case it was some breast infection or mastitis, and they made an appointment for me to see a woman's doc nearby within just days. Saw the gynecologist doc, very good man, he took one look at my mammo and arranged the appointment with a cancer clinic in my town to see a breast surgeon just days later. All this happened within one week's time. One week or so later I was being infused with chemo.

I also agree with MrsNJBand, which I usually do since we share the same diagnosis, that just becuz your symptoms aren't "classic," doesn't mean anything. The pain and swelling in your breast is plenty good reason to see a breast cancer doc, not to mention the bruises you saw. I had one scar-like place show up on my boob overnight, then a second smaller one did, very mysterious how they just showed up out of nowhere. Reminds me of how yours disappeared out of nowhere. Since IBC is from the lymph vessels in the skin getting blocked up (I think I have that right), you're going to get some sort of discoloration, be it bruises, a scar, or overall appearance changes. In fact, my swollen boob had a general bruised color to it, it was darker than my other breast. So, it stands to reason your bruises were indeed signs that SOMEthing is wrong with at least your skin tissue, and let's hope it's not IBC, but rather one of the more minor things that can go wrong with the chest area. But speed in going at this thing improves success with treatment.

Let us know what happens! I hope any tests they do will come back quickly, but actually MOST of the time an experienced and dedicated breast cancer doc/surgeon is able to tell you have IBC just by a normal office exam... in other words, it's a clinical diagnosis. GG

ma111 · January 2012

Angie,

When you do go to the breast surgeon, make sure she teaches you how to check you nodes in the armpit for swelling. That is where I found my cancer. All of the films, CT, MRI, PET, etc only showed nodes. They thought I had lymphoma until the bx came back breast. It was one and a half years later that the rash and swelling showed it's ugly face. The nodes were soft and did not hurt. I found them when I was shaving. I had no pain or bruising, better to check and be safe.

Angel874 · January 2012

Well, still no answers. I called yesterday and apparently my report has not been officially read out yet. They are expecting it today. I did call 2 breast surgeons in the area and they are willing to make an appt as soon as I have the results in hand. The one surgeon's office said that if I do not get them today, that they will call and get them if I fax them a release. They also said a week or two is not going to hurt. So hopefully today is the day!

Once again, thank you everyone for all your advice. All of you have been through so much and how awesome is it that you so willingly share your stories? You all are angels!

Angel874 · January 2012

Mammo and ultrasound both negative. I now have an appt with the breast surgeon on Tuesday, 1/10/12. More waiting...

ibcmets · January 2012

Angel,

Glad the surgeon is seeing you. I would think the ultrasound would show skin thickening, but some ibc patients do not get diagnosed on mammo or ultrasound. Good job at being persistant.

Terri

dogeyed · January 2012

SOOOO GLAD you're going on to see the breast surgeon, not so long away now. What gets me is your mammo tech said something was amiss with your breast, and yet that doc with her says you're okay. SIGH. At least YOU had wisdom to get a breast surgeon involved in this. Also, you have uncomfortable lymphs going on which he may be able to feel, so that along with what the mammo tech said, PLUS your own account of pain and swelling, with bruising earlier on, that's enough for the breast surgeon to get a fix on understanding what the situation is.

I'll tell you, while I generally let stuff go and try to always move forward, and while I think you are probably just having mastitiis or infection or whatever, if it turns out something is rather wrong with you, I think I'd email that first doc and let him know what IS wrong.

Angel874 · January 2012

When I called the surgeon to make the appt, they also want me to bring the original films of both, not just the reports. The gal said that he likes to read them himself and make the call, not depend on what others see. I really hope it is something as simple as mastitis! The lymph swelling is getting worse and I don't know if I'm just getting paranoid at this point, but the one side of my breast looks to be a faint yellow. I have numbness in my hands that is constant, so it is difficult for me to feel any type of slight changes in skin texture as well as if there is warmth/cold. 120 hours to go...

dogeyed · January 2012

Angel, usually the office who has your records can put the pictures on a disc that you can pick up and take. But other times they'll already have the prints and will put them in a manilla envelope. And sometimes the office can send them all over to the new doc themselves, or at least the records and radiology report can be faxed. But you may still have to pick up the pictures. GG

CLC · January 2012

Angel...good luck tomorrow at the bs...Claire

BarbaraJo50 · January 2012

Angel, good luck tomorrow.

I am with you...waiting...will be meeting with breast surgeon tomorrow to r/o IBC.

I started a thread...IBC as secondary?

Angel874 · January 2012

Thank you...I'm nervous as all get out. I did call the radiologist's office and I have to pick up the films this morning before heading to the surgeon. After speaking with a good friend, she actually knows this surgeon very well, so I feel pretty good going in. She is actually going to go with me. Whew, 4 hours to go.

BarbaraJo50 · January 2012

Angel, thinking of you. How did it go today?

CLC · January 2012

Angel...how did it go? I hope well...thinking of you...Claire

Angel874 · January 2012

Sorry, internet was out! Drives me crazy as I live in the boonies. Anyway, he thinks it may be mastitis, so I am on antibiotics for 10 days and then recheck in 14 on 1/24. If this does not take care of it, then biopsy. He said that the swelling would not go up and down, that it would stay. I'm still swollen, but not twice the size like I was. Still have the pain, which radiates to under the arm and up towards the neck. The only thing worrying me, I might not have all the signs of IBC, but I don't have all the signs of mastitis either. So, I am just trying to think positive that he is right and pray that the antibiotics work. I would rather have a case of mastitis!

BarbaraJo50 · January 2012

Angel, glad to hear your news! I have good news too.

My biopsy came back negative. I had a CAT scan yesterday morning and that looks good too. I did not get the formal report yet but the nurse facilitator called and talked to the dr who was reading the CAT. She said that everything looked good, but showing fluid in my chest area. She was concerned however about a spot near, behind my liver. So I have to have another CAT scan with the yucky contrast to r/o anything. The oncologist and the nurse facilitator think that it is nothing because this radiologist wants "seconds" for almost everyone. So, no IBC. I feel like I dodged a bullet on this one!!!

PEACE Barbara

chester2010 · January 2012

Angel, glad to hear the good news and thanks for letting us know the out come. Make sure you follow up if things don't improve with the antibiotics though.

Barbara: I'm so pleased to hear that the biopsy was negative. Phew, now you can breathe again. I have been wondering about your biopsy results so thanks for letting us know. Good luck with your next tests, hopefully it is nothing.

CLC · January 2012

YEAH for all the good news, Angel and Barbara!

Hfitzpatrick1 · January 2012

I was misdiagnosed with mastitis when I felt a lump the size of a nickel. Doc gave me birth control....yep birth control which made my lump grow out of control. Needless to say one mammo, one ultra sound and a biopsy a month later I am stage IV with mets then partially diagnosed with ibc today. Been on taxol for two months with no change to breast so now starting the red devil. So if you have a red swollen breast and you are not lactating get a biopsy as soon as possible. Defiantly dont take birth control.

Angel874 · January 2012

I got my biopsy last week and am going in today for the results. I am stressing big time. My friend that was supposed to go with me somehow got our messages crossed, so now I am on my own today. He could feel the lymph nodes this time, but still no rash. He says he is still hopeful for infection, but if he was that hopeful, I think he would have put me back on antibiotics again. Wish me luck...prayers....

j3brown3 · January 2012

I'm thinking of you Angel... I am waiting for results of an MRI done last Thursday... I'm the only one feeling like this is urgent as the appearance of my breast didn't meet the "clinical diagnosis" appearance that the breast surgeons were looking for. I have aches/pains that come and go and still have pink bloodshot looking skin that covers the side of my breast. My original sore has healed over but still looks bruised. Waiting is very hard... hopefully your results are negative... otherwise, why would they make you wait so long for results??? That's what I'm thinking about the mri results. Maybe you should record the appt with a smart phone or tape recorder.... to be sure you hear everything... my friend told me that research has shown that patients hear only 30% of what the dr tells them... i guess the brain is busy sorting it all out! hugs, Jody

ibcmets · January 2012

Angel,

Wishing you the best with your biopsy results.

Jody

Also, sending prayers your way. Hope MRI comes out clean.

Terri

Angel874 · February 2012

Negative biopsy! But, I do have what the surgeon is calling a "benign tumor" that is now palpable, but very small, small enough that 3 docs in the past 2 months could not feel and was not picked up by mammo or ultrasound a little over a month ago. I was on many different hormones from age 26-28 for endometriosis, being put into menopause and such. Apparently this is what can happen. Just being on the hormones puts me at 2x the breast cancer risk than the average woman and now that I have a benign tumor that might be related to the drugs, I'm now at 4x the risk. The surgeon thinks it may be hitting a duct causing the pain and swelling. This is now going to be monitored with ultrasounds every month for the next 3 months, followup with surgeon in 3 months unless the ultrasound shows it to be growing/growing fast and then we will make the decision on whether or not to remove it.

He said he is hesitant to remove it at the size it is now because most women that have excisions, on subsequent mammograms you get false positives necessitating biopsy to clarify. So, he wants to monitor for now and if it gets bigger, then definitely remove it and I'll have to deal with the yearly mammograms/ultrasounds and possible biopsies. If it stays the same, he said my decision on if I want it out or not because of pain, swelling, etc.

I'm agreeing with him right now about the wait and see approach since we know from the biopsy that it is benign. I actually found out a gal that I work with (she lives in another state) has a benign tumor as well, for over 5 years now, that is now monitored every 6 months.

Jody, have you heard anything yet? That is a good idea about recording the appt. I actually have a medical background, am one of those that goes in with a list of questions and I make sure they answer them and that I understand what they mean. If they give me the brush off, I will tell them to "stop, look at me and listen" because either I feel they are not listening to what I am telling them or I do not understand what they are trying to say. I did that actually to a doctor that my husband saw 3 months ago, an ortho guy. He apparently felt he was done with the appt and went for the door and I said "STOP!" and went on to tell him that he needed to clarify a few things. Should have seen the look on his face, it was priceless.

I hate that they make us wait for results and such and want "clinical" evidence to be able to test, etc. Not everyone is the same, our bodies are not the same, even the same cancer does not present itself the same every single time.

Anxiously waiting...

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