Scared, waiting for my appointment, need support

SarahRoss · August 2013

So first of all, I feel like I have to say that I'm generally a hypochondriac. I also think that whatever "i have" is the worst and even more than that, whatever "it" is, will surely kill me. I hate being like this and I'm trying to change my outlook through counseling and meditation.

That being said, I truly hope I'm overreacting this time. About 3 weeks ago I had noticed a small amount of thick white discharge coming out of my left nipple, it only came out after I squeezed it. Of course I panicked and called my doctor who suggested I come in immediately due to an extensive family history of breast cancer. One problem: my health insurance doesn't kick in until 8/22 and anything I get checked out before then is considered a "pre existing condition" which would not be covered as a result. I decided to wait until insurance kicked in just in case it was something bad that would cost a lot of money. I also relaxed about it a little because I hasnt happened since then, although I made my appointment for 8/28 (the soonest available).

I was feeling/ doing pretty well until earlier this week when I noticed 2 very small red bumps on that same breast. One had a whitish center and was slightly red around it (possibly from my trying frantically to pop it) and the other one was smaller and just red. Ever since finding these

I've been living in hell. I just can't get dying out of my mind.

Fast forward to today, I was actually feeling quite better because the small red spot actually went away and I *thought* the later one was too. Well lo and behold, another red spot up above my areola. Still very small (smaller than and eraser) and not very raised, but new and evident. Commence soul crushing panic. Now I feel like I'm imaging my left breast is more red than the other but at other times they look the same. No lymph nodes are swollen and neither is my breast. No pain. I've been reduced to tears at least 5 times today and my poor husband doesn't know how to console me anymore. I could use some encouraging words while I'm waiting for my appointment, honestly anything would help. Has anyone experienced anything similar? Please help me:(

chrissyb · August 2013

Hi SarahRoss and welcome. First things first,........take a few very big deep breaths and let them out slowly....try to relax a little. Red bumps/lumps can be an allergic reaction to something as simple as your washing powder and most women over child bearing age can at times express some fluid from the nipple.

Keeping those two things in mind, there are also a hundred other things it could be other than breast cancer. I know it's worrying and a very scary thought but truly try not to walk the worry path until after you see your doc and find out a little more. Try not to squeeze, prod or poke your breast until then as you will only be irritating it more and make it harder for your doc to form a true opinion.

Try to stay busy enough that your mind does not wander back to your worry as that in itself will only make you feel worse than you do.

Hoping all is good and please let us know what your doc says.

Love n hugs. Chrissy

Lily55 · August 2013

Red bumps on areola can also be hormonal or related to heat so try and calm yourself - even if it is anything related to cancer two weeks wait will make no difference at all...... And your doctors are clearly on the ball......good luck.

SarahRoss · August 2013

Thank you for your kind words. These are things I already know but for some reason it feels so much better hearing them from someone else. Since my mother had breast cancer (BRCA II) and my father died of lung cancer, I've become obsessed with getting cancer and dying. I'm 27 and have so much living to do, the thought of not getting to live my life just consumes me. I've been working on this anxiety in counseling and it seems to be getting better, but it seems like every time there's something slightly off with my body it sends me into a state of panic. My husband and I are in Colorado on vacation and I'm really hoping I can stay positive and enjoy myself. Thanks again for your support </p>

lekker · August 2013

Your mother tested positive for a harmful BRCA2 mutation when she was diagnosed with breast cancer? Have you considered getting tested? I strongly recommend that you speak with a certified genetic counselor. If you are positive for a harmful mutation, the GC could explain your options going forward. If you are negative, it could relieve some of your anxiety.

SarahRoss · August 2013

I have thought about it, she was diagnosed in 2004. When I met with a genetic counselor she basically told me my option was to get a double mastectomy and oophorectomy if I was positive. I'm not quite ready for that because I'm only 27. I get regular screenings and a breast ultrasound every year. I think I'd like to be tested after I have children, but for now at this point in my life it would feel like a death sentence if I was positive. Also the testing is extremely expensive. Do you know it IBC is related to the BRCA II gene?

bluepearl · August 2013

Latest research I found SarahRoss is no, it doesn't seem to related to either BRAC 1 or 2. Your symptoms don't sound like a typical example of IBC either. The "pimple" sounds like an infection...the white stuff is pus or cystic material. It always pays to be pro-active with your health and knowing something may enable you to make decisions that will save your life and/or lessen your anxiety. Most of us with breast cancer know that the "not knowing" was the worst part. Once you know, you make plans. It sounds like the trauma of losing your parents to cancer have made you a "body scanner", which is understandable, but try not to live in fear. A positive gene result is NOT a death sentence. It is a risk factor. Most breast cancers are in women without these genes and have other risk factors that other people share and DON'T get breast cancer. Once you know your "fixable" risks, you can PLAN. Nothing is a guarantee, even having a BRAC 1 & 2 isn't a guarantee you'll get cancer and NOT having it, that you won't. Nuts, eh! ((((hugs)))) too young to be so scared!

SarahRoss · August 2013

I agree that my symptoms don't sound like typical IBC, that's the only thing keeping me sane at this point. Luckily I still have my amazing mother still around, she beat her cancer and has been cancer free ever since. I just need to find a balance between knowing risks and warning signs and being about to handle them rationally. In a way it's a good thing I'm hyper aware because if this does turn out to be something, I will have caught it early. Hopefully in time I can find a happy medium thank you for your kind words!

bluepearl · August 2013

Oh! So glad your Mom beat the beast!!!! I am hoping that this "thing" you have, you can laugh about later and move on to have your family etc. You can get tested afterwards and then, depending on results, make your decision.(it would be important for your children too) I agree that you be vigilant about your breasts but do not live in fear about them. Early breast cancer is often curable. IBC most often starts as pain, swelling and warm rash. I had a friend with that and they operated on her (mastectomy) the same day as diagnosis + rads/chemo and she is still here, 100% well......8 years. BTW, they have just announ ced that they have found, genetically, the origins and genomes of 30 most common cancers, including breast. THIS is HUGE. You are likely young enough to benefit from these gene-based treatments-to-come if your were to ever need them (and I am hoping NOT)...did you know that sisters are more at risk than mothers & daughters? I was surprised. The screenings and ultrasound are good ideas and anything that should happen, will be caught early....and early is GOOD. Be well, SarahRoss. Be happy too.♥

SarahRoss · August 2013

So here's an update. All of the original "spots" seemed to have healed except for the original, but it definitely looks like it has improved. However this morning when I woke up there is a red patch about the size of an eraser on the same breast. It isn't painful or raised, it just looks like the capillaries are more red. None of the "spots" seem to be connected. I am worrying myself sick! I thought I was in the clear until this new red circle appeared. My husband says you can barely notice it but I feel like he's just trying to make me feel better weds can't come soon enough

SarahRoss · September 2013

I am going CRAZY! I've had at least 2 more spots come and go the last week or two. By the time I saw my primary care, everything looked completely normal. The day after, another red spot popped up. It has since gone but now I'm convinced that my left breast is blotchier than the other. I'm so pale so they're both blotchy, I feel like I'm just searching for something to worry about. Honestly. My husband and mom can't see the redness I'm seeing, either that or they're just trying to calm me down. My breast specialist appointment is on 9/16 and she has had experience with IBC so we'll see what she says. I hate when people say "trust your gut" because when you're a hypochondriac, your gut tells you that everything is cancer and trying to kill you!!! lol. Anyway. Thanks for the support everyone

alicki · September 2013

Hello,

First of all relax, spots come and go all the time. Not everything is IBC and our bodies do weird things.

Here's an example: I have thick skin under areola, slight peau d orange and a slight breast enlargement (terrible pain now gone). I have been through every test under the sun (including TWO Mris six weeks apart) and we can't diagnose IBC. My biopsy result is being checked by 4 pathologists and im having another pathologist do a separate biopsy (no idea where to biopsy though). The surgeon kiddingly suggested to remove my

breast to have peace of mind (but in a nice way).

You re right, do check it out but give yourself a 50/50 chance and tell yourself it could be a million other things. Take one step at a time. It s hard. Some Days, I wanted to take sleeping tablets and sleep all day. But with the support and prayers of friends, you ll hold it together and discover how strong you are.

I'm still looking for answers too. Lupus? Or some other weird immune condition!?!

Keep us updated.

Take care,

Alicki

SarahRoss · September 2013

I'm honestly beginning to believe I'm seeing things. For the life of my I can't remember what my boobs looked like before I got so freakin obsessed. They're both slightly red when you look really really close, but when you take a step back they look 100% normal. Who the hell knows anymore. My mind is playing tricks on my, I've been so scared of breast cancer for so long. When I first read about IBC I began to think that regular breast cancer would be a walk in the park in comparison (a horrible way to think). I need to just stop looking for things to stress about and accept the fact that my breasts do in fact, look completely normal. Outside of the random red mark that pops up and goes away. *sigh*. It's going to be a long two weeks. At least I have some anti-anxiety meds to get me through, I'm dealing with a long history of medical phobias so this is not new to me. I thought I had developed some really great coping skills but this recent bout with what I thought was IBC is really sending me through the loop.

ballet12 · September 2013

Hi Sarah, given your family history, it is totally normal for you to be worried. You don't even need to label yourself a hypochondriac about this. Since you've got two more weeks until the appointment, is there any way you can try to distract yourself? Stress and anxiety can make people sick as well, and you are just too young for that. Now that you've got anti-anxiety meds, can you do some form of physical exercise to help relieve your mind of the stress? Swimming, running, walking? or Yoga or dance (I do the dance thing). Life's too short. After you see the breast specialist, make a plan for monitoring, so you can feel that you are being watched carefully. Then go back and reclaim your life. Enjoy the blessing that your Mom is here and she's doing well.

SarahRoss · September 2013

I actually do go to the gym 3-4 times a week and that helps. I know I have every reason to be concerned but my brain takes it WAY too far. When its literally all you think about 24/7, it's not normal. I'm going to see my psychiatrist next week to talk about possible SSRI's to deal with the obsessions. It's weird, I'm not really that worried about the regular breast cancer, just random diseases I learn about. Like if I feel a pain in my side it's automatically ovarian cancer. I get regular screenings (ultrasounds) to stay on top of monitoring my breasts. I definitely have a problem but I have a counselor and plan to deal with it. I will get my life back!

Beesie · September 2013

Sarah, have you seen a dermatologist? You have something going on but it really doesn't sound like it's IBC. You may get an answer more quickly - and get the condition resolved - by considering other possibilities and seeing a different type of doctor, such as a dermatologist.

SarahRoss · September 2013

I see a dermatologist for a full body scan once a year. I just saw mine in June. I just don't remember if my breasts always looked like this or I'm just hyper aware because of the discharge experienced. Also, the red marks are completely gone (for now) so I didn't have anything to show my primary care doctor. The "red blotchiness" I think I'm making up. If I didn't know better I'd post a pic to show y'all. My insurance isn't the best so I figure my mom is better spent on the breast specialist who I should be seeing regularly as it is. Thanks everyone for the advice and support, it's really helped me put things in perspective and feel a lot better!

Beesie · September 2013

Okay, so the skin condition on your breasts has cleared up. Has the discharge cleared up as well?

SarahRoss · September 2013

The discharge only happened once when I noticed a pure white spot on my nipple and squeezed it. Only a little came out and it was thick and from multple ducts. The other side looks about the same when you squeeze it except nothing quite comes out. My doctor tried to get it to happen again and only an extremely small amount came out, again pure white and thick. She wasn't concerned, the only reason she sent me to the specialist was for my family history. The spots were completely gone on weds when I went. Another one showed up on thursday and started the anxiety about IBC all over again. The spots are all gone now. I'm just terrified another will show up. I'm afraid to wear a bra, I'm not sure if that's causing it.

Beesie · September 2013

So no discharge. And no spots at this time.

Spots that come and go are not IBC.

It sounds like you may have some minor skin condition, a rash of some sort - that's really very common. If more spots show up, given that the last ones went away on their own, it's nothing to be terrified about.

So other than your family history, it sounds like you have no reason to worry about breast cancer. As others have suggested, I think you should seriously consider genetic testing. Since your mother was BRCA2 positive, if you test negative, then you are in the clear. So don't think of the testing just from the standpoint of what it might mean if you test positive, also consider what it would mean if you test negative. Then it could very well be that your breast cancer risk is just plain average. Wouldn't that be a relief?

Given that you have no symptoms any more, it seems that you would get more benefit from seeing a genetic counsellor rather than a breast specialist.

SarahRoss · September 2013

I'm working my way up to the idea in counseling. In my current mental state, a positive result would to more harm (to my mental health, and therefore, body) than good. And we all know the awful effects that stress has on the body. I'm working on getting the same screenings as if I were to test positive. Thank you all so much for your input and validations, I honestly feel 100X better just talking it out with y'all. It's so comforting to know that this community is here for support.

Scared, waiting for my appointment, need support

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