IBC after initial dx of IDC?
 

I was feeling so fortunate that i had a clean PET scan after learning about my recurrence was local. However I got really scared when i heard my surgeon telling his office staff to put" inflammatory recurrence" in the diagnose section for insurance authorization purpose. I didn't realize how terrible IBC is until i googled more info online. Now i am really scared.

As he explained, since it is in the lymphatic, it is the same as IBC. I will be on chemo next week, very likely this recurrence will have the same receptor as the old one. weThen surgery to remove expander and as much skin as possible. Like he said, the cancer cells creeps alongside in the lymphatic system and there might be more than what we can see now. So if i didn't have a mastectomy and had tissues in my breast, it might have grown into a lump rather than skin mets. My theory is that since there was no tissue, it grew under the skin.

So a local recurrence with skin mets like mine put in the IBC catagory? I am very confused. My surgeon said a local recurrence is still curable. But am i better off with a distant met from my primary dx or a local recurrence with IBC? I am not afraid of chemos or losing my half reconstructed breasts. I looked at some studies and the prognosis for IBC is still so bad.

Anyone else had the same issue? Thanks!

Re: IBC after initial dx of IDC?
 

You're definitely better with a local recurrence as you have than with distant mets. As far as it being considered IBC or skin mets, I find so much conflicting information on it. My skin mets appeared as a blotch on the cancer breast - there was no "heat" as is common with IBC. My oncologist told me it was skin mets and not IBC (they confirmed it with a skin biopsy). I suspect they'll know exactly what yours is once they remove the skin and do a pathology. Whatever it is, know that there are so many treatments you can do in order to knock it out.

Sorry - but you're stuck with us for a long time. :-)

Re: IBC after initial dx of IDC?
 

I agree with the skin mets. Don't let your mind go to a dark place.

However, I will make some comments but it is just me - a layman and NOT a doctor. This is only my opinion on the difference between skin mets and IBC.

One thing is that you don't have your real breast to judge but usually IBC is diagnosed from the get go because there is a true biological difference between IBC and IDC. There is a reason it behaves as it does - swollen, red, hot breast. Dimpling, orange peel skin, inverting nipple. Some "dots" or small pimples but maybe not everywhere.

Skin mets is more a recurrence. Like you said, where was the cancer going to go? It is a tumor or large pimple. If there is redness around it, it has a raised edge versus it being smooth between the red and normal colored skin. It has a more "lesion" looking appearance.

Besides some chemo and surgery, I don't know if your doctor mentioned radiation. I didn't read your signature to see if you had radiation already but if you did not, you should ask and have a consultation with a radiation oncologist.

I am so sorry that you have to go through this scare but a local recurrence is more than doable and survivable. Unfortunately, you will have to work harder (have more treatment) but I know you can do it.

Re: IBC after initial dx of IDC?
 

Yanyan, I'm sorry you have to go through this. As you see you have a great gift of knowledge here and many many support sisters. Gods blessings to you and I hope the treatment goes easy and well for you. Please post often! I'm praying for you sweet woman!

Re: IBC after initial dx of IDC?
 

Thanks everyone. I am starting chemo again hopefull next Thursday. I have 2 affected areas, one close to armpit and one around the mastectomy scar. The one near the mastectomy scar is red and bumpy; the one near armpit is like a rash with red dots. My surgeon thinks we will use chemo, surgery and radiation and none of these alone will be effective. I understand this is the "difficult to treat " local recurrence. Since radiation did damage to vessels, the chemo drug won't be delivered as efficiently as it is to other non radiated areas. My oncolgist explained that is why sometimes you see mets elsewhere shrinking but not the local mets in previously radiated area. My surgeon explained that in my case cancer spreads via dermo lymphatic systems so it can spread to all around my back. And those are hard to treat. I guess the good thing is taht PET is completely clean. It didn't detect the recurrent cancer either. Maybe it is because the dye didn't get to those radiated areas so well. My brains are just so fried now. Learning about Courtney's going to hospice makes my tears. Why does this diseases strike so many young women? I see women in their 30s like me, some with young kids fighting for lives. It really hurts !

Re: IBC after initial dx of IDC?
 

Yes it hurts, and it is scary. But you do not have mets and your cancer is being treated aggressively. Hard to treat doesn't mean it's impossible. It means that the doc needs to plan carefully, keep an eye on you and use every braincell he has to combat this cancer. And that's what is going to happen: you and your doctors will figure out the best way to deal with this.

I really like that the PET was clean.

Hugs

Jacqueline

Re: IBC after initial dx of IDC?
 

Re: IBC after initial dx of IDC?
 

YanYan, I too was diagnosed with skin mets, and my Dr. did not call it IBC b/c he said I did not initially present with it. I keep battling it, and it's doable. There are many drugs coming our way, there is no need to dispair. I wish I could take all the dispair (at times) I have felt over all these years back....it doesn't help anything, and all these years have gone by and I'm still here!

Sometimes the best we can do is enjoy what positive things we DO have and put one foot in front of the other and keep going. There is hope on the horizon.

Re: IBC after initial dx of IDC?
 

I thought about getting 2nd opinion but we are still waiting for the receptors status. My oncologist mentioned a whole bunch of chemo drugs and he did mention that adramycine does not work well for her2. He mentioned tykerb xeloda abraxane. I think they want to see my response on the chemo first but also explained the not so efficient result on irradiated skin due to poor blood supply.

A friend told me no energy should be wasted on negative thoughts. I think everyone agrees that the second time is harder. Now that I look back I think those 2 spots have been there for quite a while a few months at least. They were not obvious. I wish my surgeon or previous onco had told me the signs to watch for. I think many women are unware of this. Now I have a new surgeon and oncologyst and I have more confidence in those 2. The surgeon went on with biopsy despite a negative ultrasound. The oncologist spent almost 2 hours with me for consultation. Examed me from eye to toe. He goes out his way for patients .

Maybe they are my guard angels ...maybe this is just a bump to the road of NED and eventually we will all be there.

Thanks everyone for your support

Re: IBC after initial dx of IDC?
 

Hi YanYan,

I was first diagnosed in 2009 with HER+++, ER/PR-. I had mastectomy, ACTH chemo and radiation. While on Herceptin, I noticed a very flat, pink rash on my reconstructed breast. EVERY doctor ( onc, surgeon, dermatologist, plastic surgeon etc) said it's not cancer. Onc sent me to a dermatologist for creams, antibiotics etc. I alone kept asking for a biopsy, and that's when I got my recurrance. Needless to say I fired my oncologist and since Jan 2011 go to Memorial SLoan Kettering. They did NOT recommend doing any surgery to remove skin or the reconstruction. They put me on Xeloda and Tykerb, and within a couple of months the rash faded. I am still on the tykerb and herceptin doing ok. I also still do the Herceptin every 3 weeks.

Maybe it's good to get a second opinion..There certainly is hope.
Wishing you all the best to you

-Laura

Re: IBC after initial dx of IDC?
 

Thanks Laura! There seems to be a debate on how to treat isolated skin mets. I am glad to hear that tykerb and Xeolda are working for you. Is herceptin part of your treatment regime for the recurrence? I hope the chemo drug I am getting will be efficiently delivered to my radiated breast. Did the doctor at Sloan tell you why you are. Of getting the big chemo and why they don't recommend surgery? Thanks

Re: IBC after initial dx of IDC?
 

I am so sorry to hear of your recurrence.

I believe your oncologist is wrong on the adriamycin front. Typically, adriamycin IS effective for Her2 positive breast cancer. Some, like Dr. Slamon, do not recommend it for initial treatment because TCH has been shown to be as effective or almost as effective as AC followed by TCH without the toxicity. This is not to say that you should be on adriamycin now. I just wanted to clarify this point.

Re: IBC after initial dx of IDC?
 

I agree with Jellybean. Adriamycin actually improved the odds of Her2+ women prior to Herceptin being available. It works well on Her2+ women, especially if your cancer is also TopIIA positive as well (not a common test but about 1/3 of Her2+ women are TopIIA positive as well).

Re: IBC after initial dx of IDC?
 

I would like to add to the andrimycin debate - we believe it was completely ineffective for me. (sorry not andramycin specifically but anthracyclines) The cancer in my breast tissue and lymph nodes showed a genetic mutation which is believed to be resistant to anthracyclines - P53. Wouldn't it be great if we could have true sensitivity testing? I did get skin spread while on epirubicin, 5fu and cyclophosphamide - not diagnosed until I started taxotere and herceptin by which time I already had lung spread also. I had skin sparing mastectomy with tissue expanders - skin met was about an inch from my scar but close to where the initial larger tumor was. I had navelbine, herceptin and Everolimus for 7 months and was stable before progression in my lungs. I have now been on tykerb xeloda for 5 weeks and my skin met is all but gone - ct in 2 weeks to check lungs.
Just thought I would add my story - just because we are her 2+ - doesn't mean we all react to medications the same way. I wonder had I done the TCH regime if I would be stage 4 now? We will never know.
Yan yan - there is much hope for you - it sounds like it might be worth getting a second opinion. I haven't had radiation so don't have the issue with blood supply to the mets. I have a friend with a local recurrence in a reconstructed breast and she is having chemo before having the reconstructed breast removed - her lump is very large and she has a history of complications with surgeries.
Good luck.

Re: IBC after initial dx of IDC?
 

I think there are labs that does sensitivity testing. A friend of mine who had ovarian cancer recurrence had it tested. It costs about 6000 usd and is not usually covered by insurance. The test takes about 20 days and meanwhile she is on the same chemo as last time. I think my oncologist said adrymacine does not work very well with estrogen negative bc, maybe I heard him wrong but I do remember the drug starts with A. Time is so tight as you want to start treatment ASAP but also want to get the most efficient regime. There are different sayings about those tests and one debate is whether the drug acts differently in our body than in a lab environment. There were also reports that people were NED on a drug which showed no effect in a tumor sensitivity testing.

Re: IBC after initial dx of IDC?
 

Hi Ladies. I am glad to be back in the Her2+ gang. I feel fortunate that my reocurrence is still Her2 positive and that knowing so many of you here living life fully gives me an incredible sense of hope and encouragement !!! My oncologist will bring my case to the tumor board meeting tomorrow and let me know what drug they will use. He mentioned that we will probably use Abraxane, with herceptin or tykerb. I am excited to get this started ASAP. My oncologist has in the business for at least 20 years. I am surprised that he is bringing this case to the tumor board, my surgeon will do the same thing. I thought he would have the treatment right off his head. But like he said, "there will be more brains working on the same problem "- which is good for me. I will post more when i hear back what medicine i will be getting. I thought abraxane is only used for metastic BC. But knowing this drug out performs taxotere gives me hope.

Re: IBC after initial dx of IDC?
 

There is always hope Yanyan, Gods blessings to you. You are in my prayers.

Re: IBC after initial dx of IDC?
 

Dear her2 sisters
The past week has been busy trying to figure out treatment plans and seeing doctors. Thanks to all of you for sharing your treatment regime and response. I put my questions together and my oncologist listened. He will put me on tykerb and Xeolda. The decision was made last Tuesday and I am still waiting for insurance to approve tykerb.hopefully next week I can get started.

I asked about dose dense chemo since the local recurrence in skin demonstrates similarity as IBC that spreads via lymphatic systems. He explained dose dense is usually given at the initial diagnose. He also explained my recurrence is not considered IBC because my initial dx was IDC

He decided not to give me abraxane because I was already given taxotere and progressed. So the idea is to use new drug on me. He also said the the Xeolda and tykerb is a great combo. I have read many positive things about it clearing up skin mets. I hope this will work for me. I am also er/pr weakly positive so down the road I will be on hormone therapy. I disagree with this but it is not the prime concern right now.

I will have another mastectomy to remove expander and skin. So I will be flat for at least 2 years. Although skin sparing has been proven just as eff as the non skin sparing, tiny cance cells sometimes does hide in skin. My recurrence was exactly where the cancer was. Had I been given the option again I still would not know. It seems every approach has its benefit .

Radiation will be reserved for future but not now. I got a good dose
Of radiation so my radiation oncologist would like to save the weapon for later if I have a chest wall recurrence.

I hope no one has to go through what I have. Just wanna share my treatment plan with you all as I myself find knowing about other peoples treatment options really helped me!