IBC - Worried and wondering...

scootermom · August 2007

Hello,
I am 50 years old and have been having problems with my left breast for several months.
Besides the fact that my breast is enlarged, a spot similar to a 'bug bite' popped up. A biopsy was done on this spot and the report was negative.
With the stabbing pain and itching, I visited a nurse practitioner. After she visited with the doctor, a diagnostic mammogram and sonogram were done. The technician says that their are cysts and the doctor will have to decide what to do next.
I called today because of the pain that I am experiencing, the nurse thought I might have an infection but nothing was prescribed. I'm beginning to wonder if anyone knows what's going on...any suggestions?
While I'm glad that nothing has shown up, the symptoms of the enlarged breast, stabbing pain, itching, the 'bug bite' (which was really one of the first symptoms...), and really no explanation has me wondering just how far do I go with this before I begin to push the issue.
The surgeon suggested for the surgery can't see me until October 9. I feel like I'm traveling though this scenario in a covered wagon. Bottom line, I think it's gone on way too long and drawn out.
No answers, symptoms continue...Haven't even seen the doctor during all of this and no one has looked at my left breast to see the difference in the two.
I thank you for listening and welcome any advice.

shrink · August 2007

Don't want to worry you, but then, you already are. You know your own body. My punch biopsy was neg. However, the diagnosis of IBC was made based on the sudden onset, a bruise, an enlarged breast, some redness and hot to the touch. These symptoms came and went for 6 weeks because I thought it was an injury. I didn't have pain or that orange skin feature. Anyway, time is of the essence if you do have IBC. It spreads quickly to other organs. I was lucky to have caught it prior to spread although my lymph nodes are "suspicious looking", the mass was 6 cm and I am at Stage III. I had a gyn appointment (no findings) in March and this all happened mid-April. My doctors are treating this very aggressively because it's an aggressive form of breast cancer. I saw the surgeon, radiologist and oncologist all in one week, took all the diagnostic tests and started treatment within two weeks. This is a rare form of bc and many docs don't have any experience with it. I'd suggest you push and push for an appointment this month. Maybe it's just an inflammation but you don't want to wait.

"Sometimes I think I understand everything. Then, I regain consciousness." (ashleighbrilliant.com)

scootermom · August 2007

Thanks for replying...

I feel that my situation is one of someone not really knowing what they are dealing with. Yes, the doctor did overrule the NP with the regular mammogram and call for the other tests. But, like I said, I haven't seen the actual doctor and when the nurse called yesterday and said that 'you need to see a surgeon, the doctor can't do anything for you.'

My first reaction was , the doctor maybe can't do anything for me but no one has looked at my breast which I think is really unusual for this situation. The only one who has seen it is the technologist at the mammography place because it was so big I had to hold it out of the way to take the right breast.
Seems as though the nurse thought it might be a staph infection ... I really don't think so ... even if it were they failed to prescribe anything for it ...

I have just about decided that this doctor is primarily a baby doctor. The recording says if you are pregnant we will get you an appointment in a few weeks. If you are a new patient, we are scheduling in February.

Thanks again for responding, I appreciate your time, and certainly your experiences and thoughts.

RobinTN · August 2007

Scooter mom
change doctors now! Get another bioposy quick.
I had a sudden onset and i mean sudden in a few hours in aug 04 woke up from a nap with a 103 temp my left breast was swollen hot red and sore.went to the er at the hospital i was working at the time,I am an RN.was admitted for 9 days,had 4 negative ultrasounds 2 negative mammo,was diagnosed with mastitis.placed on powerful antibiotics.saw the doc every 2 weeks was off work 6 weeks,went back to work didnt get any better.still swelled.no lumps couldnt feel any anyway.then i demaned a biopsy.went to the surg/onc the next week had a punch biopsy on tuesday morning.wed morning i was at work and the phone rang it was the doctor and it was cancer.Went to my onc who ordered more diagnostic tests and it was ibc stage 4 with mets to liver and nodes.Bang,had port placed,bang started chemo.Immediatly my breast started to shrink.Took from nov until may the next year on chemo to get it out of my liver.then had double mast,radiation,was cancer free for all of 4 months last year then it came back with a vingance had 12 spots in my liver.was given 2 months to live if the chemo didnt work.God has a plan for me,the chemo worked immediatly.Now I am ned.
I told you this to scare the crap out of you to do something dont put it off as long as I did.Remember IBC has a 1% survival rate,it is not like other cancers,it dosent grown in lumps but rather in sheets and it grows fast that is why it is so deadly usually by the time it is diagnosed it was to late.It was almost to late for me dont let it be so for you ok?
let us know what happens please.

shrink · August 2007

I hope you're wrong about the survival being 1%. I think the chances of getting IBC in the first place are something like 1 to 4%. My onc told me that with aggressive treatment today my changes were better than 50%. I'm stage III with some node involvement but no mets to other organs.

Thinking of all of you, Shrink.

RobinTN · August 2007

I hope and pray I am wrong to,but that is what I read on the internet when I was first diagnosed.at that point I stopped reading about it.Just couldnt take the odds at that time.IBC is very rare indeed.
Dont know why we here have been given the burden of it but i know I have.
I will be on maintaince herceptin for the rest of my life,and every 3 month scans to find any reaccurence at once.but then again I dont know how much more chemo I can go thru with.I have just decided to live my life for as long as I can and not look back.
I am glad you dont have any organ involvement.that is great.You should do just fine you were diagnosed early on?
take care and so nice to meet you gals.

shrink · August 2007

Hi Robin. I was diagnosed about 6 weeks after I noticed this thickening in my breast which I thought was an injury of some kind (sort of black and blue). It got bigger and smaller. The surgeon didn't think it was IBC because the skin biopsy was neg. However, the radiologist made the dx clinically by my report of how it seemed to appear over night. She thought there was reason to be optimistic if the disease were treated aggressively which is what you are doing too. I'd check with your docs about the odds because there are lots of survivors out there. You might want to check out http://www.ibcsupport.org/. There are lots of postings and some very good, up to date information on that site. In fact, at 8:30 EDT tonight, there is a web teleconference on the subject with one of the leading authorities on IBC. Go to the site and you will be directed on how to tune in with your computer. Hope this helps.

RobinTN · August 2007

Thanks Shrink I will check the site out.
I sure hope the odds are better than what I first thought.
I dont want to ever go thru this again.

RobinTN · August 2007

Shrink
i am so glad you sent me that link and I read it.IBC now has a 40% survival rate after 5 years with the new meds they have now.I cant believe it.you dont know what that does for my mental state.I have lived with the 1% rate for the past 3 years and have been planning my funeral.
It also says that at the 5 year mark the odds are in our favor that it wont come back.Whoppee....again thank you.Wish I had posted a long time ago and you found me.Saved me alot of worries.
take care

shrink · August 2007

Well, I'm glad too. I don't think I would do much if I believed that the survival rate was only 1 %.

Shrink

"Can God make mistakes? If so, it would exlain many otherwise very puzzling things." ashleighbrilliant.com

scootermom · August 2007

Robin,

Thanks for your comments and advice. Like I said earlier, I feel like I am traveling alone in the medical world.

The nurse on the phone who told me that it might be an infection also said that it could be cysts and that they possibly needed draining. I read with interest your comments about your breast shrinking following the chemo.

Of course, my main symptoms are the enlarged breast, itching, stabbing pain and what started all of this was the 'bug bite' that was biopsied. There has begun to be a pinkish area between the 'bug bite' biopsied area and the nipple. Not really red or infected, just faintly there.

What I want to know is...do you just ask if they are familiar with IBC or what? I know it's me...but I know some doctors don't like you diagnosing yourself. Perhaps I should find someone who specializes in IBC. I'm just afraid that if my breast is not inflammed, like as in red, that I still might not be going anywhere and that they are going to treat as infection when it possibly isn't. I still find it crazy that when the nurse said it 'might' be an infection, no antibiotics were given...no tests run to see, not come in and let us look, just send you to a surgeon in October....

Once again, thanks for your interest in me. Just went back and reread where you demanded a biopsy, going to see if they can speed things up a bit.

RobinTN · August 2007

Scooter,If i were you i would tell the doctor that you have been reading about IBC and you are worried and you would like to have a biopsy to rule it out.That shouldnt be a problem if he is any kind of dr.at all.If he refuses I would find another doctor quick.or depending on your insurance I would look for a surgical oncologist to perform a biopsy.Depends on if your ins.requires a referral.if that is the case then I would aggrivate your doc to death until i got a referral.It might just be an infection and then it might not be.
I feel stronger about asking for things now than i ever have.I am so fortunate to have a wonderful onc and have had other good docs thru this.Please let me know what happens.I have had you on my mind since i found your post and I am very interested in you.

scootermom · August 2007

Robin,

Thanks for your interest and concern.

I think I failed to mention that the doctor is a woman, so for me it is all the more crazy.

My husband was diagnosed with cancer last year and the surgeon that I have been referred to is the one who removed the tumor from my husband. His original appointment was set for almost two months after the scans came back. He really, really pressed the issue and had the appointment moved up, of course, it really kind of ruffled feathers, even a little bit with the doc and especially his office staff, who has a reputation of being down right rude. Everyone who sits in the waiting room comments about it. He's a great doctor and obviously overworked. Of course, my husband's situation with his cancer, is a prime example of not waiting.

With the situation we experienced with my husband, I'm wondering how it would be received...perhaps I should go to the 'head dog'. Seems as though they have lost a surgeon in the group and the remaining two are overloaded. This certainly doesn't help my situation.

Will be in touch, will investigate more tomorrow.

You know, with the doctor being a woman, she didn't mention any infection or fibrocystic breast disease or taking anything to try to alleviate anything just she can't do anything and go to a surgeon.

RobinTN · August 2007

please let me know what happens

scootermom · August 2007

I will, Robin, thanks again.

RobinTN · August 2007

Scootermom:havent heard from you in awhile.What is going on?what have you found out so far? I have though of you everday and looked for a reply.Hope all is well.

IBELIEVE · October 2007

Hello I am 29 year old mother of two girls 2 and 6 months IAM also nursing I noticed a red almost sunburn on the top of my left breast went to the Doctor she gave me antibiotics took for 10days red still there I called her back and they just did a mamogram what do I DO NEXT...I read about IBC on the web Iam so scared do I make an appointment with a surgeon...by the way I also have saline implants ..do i get an MRI the Doctor seems to be unaware of IBC

thanks

scootermom · October 2007

Hello everyone,

Haven't been on in quite a while, wasn't able to move my appointment up but did visit the surgeon today.

He was baffled at my situation and spent the majority of time trying to think of something to tell me.

The doctor did a through exam, couldn't feel any lumps and did note the cysts on my left breast. Thought that if a spider had bitten me that perhaps these were side effects from that that I was experiencing. I've been bitten by a brown recluse spider before and yes there are great and numerous side effects, just don't think that it is the case here. I was adamant about the stabbing pain and intense itching.

He was almost apologetic, he did look at my mammogram films and did note the multiple cysts, but didn't feel as though they were the culprit. He said he had no idea what was wrong and did note that the left breast was much larger than my right...he said that he was sorry he didn't have any answers, I was too. This has gone on for over a year.

Perhaps I should seek a second opinion, I've decided that maybe this is what needs to be done. No suggestion of a biopsy was even offered. I didn't ask if he knew anything about IBC, I'm wondering now if he did. I'm thinking tomorrow about calling the local cancer center to see if they treat any cases or if they are not privy to IBC.

I'll keep you posted....

scootermom · January 2009

Once again, I am back on here.

My breast that I have referenced before is still getting larger and much more bothersome.

Still no lumps are felt, I had my annual checkup two weeks ago. The doctor is sending me for another mammogram. In the lower left quadrant of the enlarged left breast, a bruise has developed and the veins have become prominent.

While I am glad that no cancer has been found...there is 'something just not right', even the doctor said so...so I am still hoping for some answers to this situation that is painful, with continued itching and stabbing pain. I just wish I had some answers.

ophelia007 · January 2009

i am frustrated by the fact that they continue to give you mammograms where they should be doing biopsies and resonance imaging, no? i'm sorry you are having to go through this. i think a second and third opinion might be helpful. i really hate when doctors don't listen to patients. we know our bodies! and it's obvious in your case that something is going on. thank you for the updates. i am eager to hear what they say.

IBC - Worried and wondering...

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