I'm curious as to what type of surgery you did have ... a lumpectomy perhaps ?? You didn't mention what type of breast cancer or if there was any lymph node involvement. These would be very important points in choosing not to do Chrmotherapy. Also I don't "get" the bilat. mastectomy to be done later this year .... why then and not now ??? Thanks....
I have ibc and have several tumors which have mets to skin surface. Lumpectomy is definitely out of the question! Yes, initial lymph node biopsy was positive. The whole thing about not having surgery now is to see that the herceptin stops tumors growth as well as shrink tumors, which will pave the way for a cleaner surgery later on and the possibility of not having exterior beam radiation! Once this is accomplished I can also possibly have the implants inserted sooner. I do not believe in chemotherapy for a multitude of reasons, one being that it has only been proven to be successful in less than 15% of those who receive it (even with the newer drugs). More often than not it does no good and the bottom line is that quality of life and longevity of life is not necessarily improved. With targeted therapy such as Herceptin, only bad cells are affected and not otherwise healthy cells and organs. I still have severe side effects but are manageable. Believe me, I have done my share of research as I am sure everyone else has, and this was the toughest personal decision I have yet to make!
Best of luck on this journey!
I don't know anything about Herceptin, and my bc was HERneg and Estrogen positive, But my oncologist told me that in the past, when people who had IBC and only had surgery, they all died not that long after.
also, that with IBC it is especially important to use the trimodal treatment of chemo, surgery and radiation with chemo first. (on top of that hormone treatment and/or Hercepin.)
Like, with me, and I had IBC, I had a modified radical mastectomy, and all my lymph-nodes removed because all three sentinel nodes were positive plus about ten more. And then I had full radiation on top of that and to the axially area as well.
So, what do I know but I am just telling you what I had and what my doctors (surgeon, oncologist and radiologist told me.) I must say the chemo did not work very well on the lymph nodes but significantly shrunk the large tumor on the right side.
Nobody was ever concerned about the other side and bilateral mastectomy was never brought up, and neither was reconstruction at that point and time and which was about 14 months ago.
Most oncologists will recommend chemo--that is what they are taught and told to tell patients, believe it or not! They are taught to treat the symptoms and not the cause! Their opinions are given strictly on the information they have at hand--and not what is factual. They give you their best "guesstimate" within the guidelines they are handed. This is why it is so important to research as much as possible before giving in to treatment. Since your bc was HERneg, you are not a candidate for Herceptin which is probably why your doctors did not mention this to you. Herceptin is effective for only those who are HER2neu+ and ER/PR+. Also, I find it downright unconscionable that not one doctor mentioned reconstruction to you. There is a law in effect which states for the most part that any women who undergoes mastectomy MUST be afforded coverage for reconstructive/implant surgery! So if you have/had health insurance, then you are covered.
I personally know many women who have been diagnosed with this terrible disease, and each one had to make the same difficult decisions.
I only wish you the very best.
Im no expert either but I also have IBC and am learning as I go. I was diagnosed in 7/08 with stage IV IBC in my right breast. Im HER2 - & ER/PR+. So I also am not a candidate for Herceptin. I had a biopsy done on Lymph nodes which were positive and nodules on my lungs showed up on PET scan , which were biopsied and positive. So 08/08 I started chemo.Taxol & Avastin with cycles of 3 weeks on/1 week off.I did about 3 cycles and was rescanned and had good results on tumors(multicentric) in right breast.And my lung nodules had deminished and were no longer able to be seen.We then took a break from chemo and did Mod. Rad. Mastectomy on right breast, because the inflammatory effects on the breast were so severe that I had developed an opening next to my nipple that would not heal. 6/12 lymph nodes were still full of cancer. So I guess the chemo did not do well on the lymph nodes. After recovering from surgery, we have resumed the 3 cycles of chemo I had left. I also want to point out that I was also am not a candidate for reconstruction , which I think is the case alot with IBC because they had to take so much tissue and skin.I imagine if I wanted I could look into it down the road, I know by law it will be paid for, but it would mean extensive work to reconstruct my chest and right now Im focusing on fighting this very aggressive beast.So I now have 2 chemo treatments left and I'll be done with chemo and have already met with radiology oncologist to start planning radiation.Radiation is almost always nessasary for Ibc to keep it from reaccuring in the chest wall and arm pit area, and the skin in that area.I will have about 30 radiation treatments over 6 week time period. Also because of the hormone status I will probibly go on hormone treatment down the road.My treatment as with Katarina777 is the typical way they treat IBC. Keep in touch , I am definatly interested to see how you treatment works, and if there could be other ways just as effective to treat IBC.As far as my oncologist though, he is definatly much more knowledgable than me on all of thse things and I do trust that he is treating me based on extensive research.Good luck to you,Melissa
Melissa, thank you for your comment. I feel connected if you know what I mean. XXXKat
A little about me:
53 years young-
Nipple retraction, growing sore near nipple area, pain in breast.
August, 2008: Mammogram, xrays, blood workup ordered by my internist. Referred to W&I Breast Health Center for further eval.
10/10/08: Core biopsy of right breast. T4 N1 Mx
Bone scan and bone density: unremarkable, normal.
10/20/08: Breast MRI – confirmed 3 large tumors and several smaller.
10/27/08- CT Scan (abdomen, thoriax, pelvis)
11/7/08: MRI - abdomen: 4.3x4.3x5.1 cm and 7x7x10 mm hepatic masses;
now confirmed Stage 4
11/08/08: Tumor Markers: CEA = 60.2 CA 15-3 = 122
11/08/08: Mugo testing: heart is healthy
11/10/08: Meeting with onco and surgeon: Recommended usual protocol of chemo, mastectomy, etc.
11/20/08: Add'l meeting with onco and surgeon. I informed them I would not do chemo, but would however receive Herceptin alone every three weeks and take Arimidex daily.
12/01/08: Started Herceptin treatment and continue every three weeks.
12/08/08: Started daily Arimidex.
03/03/09: CT scan: All tumors diminished in size approx. 22%.
Tumor Markers: CEA = 41.2 CA 15-3 = 79
My mother was diagnosed with BC (stage III) late last month and is hesitant to start chemotherapy. We haven't received her second biopsy back yet, but I was wondering how the no chemotherapy worked for you. Is the cancer gone?
Hi Cameyk. I too was diagnosed with stage 3 grade 1 bc in Oct 2013 and I did do chemo and rads. I have no regrets doing chemo. I truly believed it helped me because it shrunk my tumor. My doctor told me that not doing chemo was not a good choice. I hope BettyP02911 is well. Would love to see her post something but I'm not going to hold my breath. All the best to your mom. She will be fine :)