IBC after IDC??? or something else????

Kathie100

Good morning ladies, really torn about posting here but felt 'Who better to know but the ones that are fighting it.'. I am almost one year out since diagnosis of IDC no lymph node involvement (sentinel node dissection). For the last 4 months the same breast (left) has been really swollen and painful.  . Nipple also swollen and color of Arcola gone. I have what I describe as thick swollen ridges along the side and bottom of breast that run from the nipple outward toward outside edge of breast. The skin of the breast in the same location is really thick. About 2 months ago I noticed pain under arm like a dull ache. A couple days later found a lump that I'm guessing is an enlarged lymph node. About a week ago I noticed more little lumps and a slight red line going from under my arm to my back.. These aren't as large as the first one. The one that appeared first is about 3 inches away from the node they removed during lumpectomy.  today I noticed a small palpable lump I'm again assuming is a lymph node on the right side above my clavicle bone. My left breast is dark due to previous radiation so can't tell if its red or not it has a bruised look to it. I have sharp pains in the left breast, always in the same location (outer side) which is about 4 or 5 inches from lumpectomy scar. The whole breast is tender, even the bones underneath are tender. Ive seen my surgeon for the swelling and pain, they gave me cream, have not returned since other symptoms presented. I feel they blow me off as a complainer since I did have some side effects from chemo. I am stage one, grade one with oncotype 19. I am telling myself its probably nothing but before I call my oncologist back I wanted to know what you ladies think. I have read a lot of info on here and hate to bother you but I need some advise and support. Ive had a hard time with this whole cancer thing, can't seem to get 'back to normal', tired, joint pains, headaches, etc.  I can't imagine going thru some of the things I've read you have gone thru so I feel like I have no right to complain, just be strong and pull my big girl panties up and get back to business. Thanks for listening.

Kicks

A call to your Dr is in order.  Actually when it started progressing.  There are many possibilities of what is going on.  Yes, it is possible for IBC to develope after other BC.  IBC is rare itself (1% - 5% of all DXd BC) - those who develope it after another form of BC are much more rare.  A recurrance of IDC quite possible might be more likely, or something else totally unrelated to BC.

Contact your Dr.

NancyHB

Kathie,

I don't have IBC but did have IDC and, like you, had radiation (mine was Lefty, too).  It's been almost two years since I completed chemo and rads, and even now Lucy continues to change.  During a recent follow-up with my rads onc, I mentioned some concerns; like you, I have noticed that my left nipple and areola are swollen, yet almost colorless, and I have "ridging" and pain in my breast that aren't anywhere near the radiation and/or lumpectomy site.  The breast itself is also swollen and much bigger/heavier than her sister, too.  My doc has said all of these are an after-effect of the rads (I don't remember hearing about these changes, but it doesn't surprise me...nothing does anymore...)  The ridge running under my breast is fibrocystic; my whole boob is, basically, a painful mess.  I have severe pain several inches down from my SNB site; again, my doctor explains this is a result of the radiation.  I've had a couple of scans and xrays and everything comes back normal, so I try to "get on" with normal life, but sometimes it's really hard to do.

Given that you've already had cancer, it's certainly well within your rights to ask for more testing until you get an appropriate answer.  The truth is cancer is the "gift that keeps on giving" long after our treatment ends.  Hopefully (but unfortunately) these changes in your breast are the result of treatment, but keep seeking answers until you find out what you need to know.  Good luck; I hope for negative results for you!!

Kathie100

Thanks so much for your responses. I have a feeling its from Radiation, I had a terrible time with it. The swollen lymph nodes (I guess that's what they are) made me think differently. I guess I will make an apt and have it checked out I just hate the way they dismiss your concerns. Seems like after treatment they just move on.

Faith316

Get it checked.  You can read a little about my history in my signature below.  Bottom line is I had IDC and DCIS and then was dx with IBC while still in treatment for my first diagnosis!  They initially thought my symptoms might be radiation related.  Kept telling me ---- you have had so much chemo and radiation that there's no way you can have IBC now.  But, I had all the symptoms.  Hot, red, swollen breast.  Thickening.  Flattened nipple, Peau d'orange.  Ugly discoloration/rash. I insisted on a biopsy.  They did a punch and a wide excisional biopsy.  Guess what.  I was right.  I did have IBC.  My local dr was shocked that this could have happened.  Sent me to MD Anderson, they changed my chemo and I immediately began to see improvement.  When I had a uni-mx  six months later, there was no evidence of disease (NED).  I had a PET/CT about 3 weeks ago and I am still NED, Praise God!

I don't tell you this to scare you and it may be something different, but get it checked out.  And, if it does turn out to be IBC, don't assume the worst.  Like Kicks said above, IBC is rare.  To have it after having had a different type of breast cancer is extremely rare, but it did happen to me.  Best to get it checked and know for sure.

Please let us know what you find out and if I can answer any questions, I'd be happy to.  Good luck.

Kathie100

Faith316 thanks so much for sharing your story, I'm pretty 'dumb' when it comes to this cancer. I'm less than one year out and don't know what a lump feels like and don't know what exactly a swollen lymph node feels like. I didn't find my lump, never even felt for it, didn't have swollen lymph nodes. But I do know that I have some type of lumps under my arm and pain in the breast. My breast changes weekly as far as swelling, thickness and pain. I know its hard to understand and its hard to explain but I hate to go to my oncologist unless I can show them, with some understanding, that there is something going on. Again thanks for your response and help in understanding this.

Faith316

IBC doesn't usually form lumps; instead it grows in sheets which is why you get the thickening.  It also can't be picked up on a mammogram.  I had a mammogram when I had full-blown IBC that came back normal!

Keep us posted how you are doing.

Kicks

As Faith said -IBC is 'different'.  It does not 'show' in 'lumps' .  It forms in 'nests' or 'bands'.  I had my mammo in late June - nothing different.    Aug 8, I was DXd IBC. 

Talk to your Drs - IF they won't answer your questions - get 2nd  or 3rd (or more) opinionsK

Kathie100

Thank you for your information. I will probably call next week and see if I can't get in to see the Dr. I haven't told my family yet because I don't want to put them through the worry especially if its nothing. Have a great weekend. I live in Kentucky and the Derby is going on tomorrow, probably won't go but may go somewhere to watch 

Kicks

Kathie - Have a mint julep "with' me tomorrow.  Last time I was at Churchill was 1972 when Secratriat 'burned up' the track.  Now I just watch on TV - but from a relative's box.

cider8

Call Monday about feeling lumpy.  It's a tough time, for sure.  Tissue is still changing from rads and surgery: scar tissue forming.  The sharp pains could be nerve regeneration.  Some lumpiness could be scar tissue.  But it's best for your doc to see and palpate, document.  If it's normal have them tell you WHY it's normal.  Ask what would would be an abnormal concern to them, since this feels abnormal to you.  Trust your instinct and don't worry about 'bothering' them.  You are paying them to do their job!  You aren't asking for special favors.  My MO always tells me to call if I have any concerns or issues; your docs may feel the same but maybe aren't as good at communicating to you since you are a 'boring' case.  (Not to be flippant, but boring is best!  Seriously!). You are your best advocate and the docs work for YOU.  

So if all is well ask about some PT to work on the scar tissue with myofacial release or soft tissue mobilization.  Find a PT that has specific experience with BC patients.  I'm also liking acupuncture for some pain relief, relaxation; supposed to help with fatigue and building immune system but too soon for me to tell.