Wanting to talk to Infammatory Survivors

Hello Tammy, I also have inflammatoryBC, if you would like to chat sometime, please contact me. I am 32 and have had 2 chemo treatments. I am also looking to talk to survivors. JULIA

I just got on this message board so I'm really new at this. I too was diagnosed with IBC but only after they went in to do a partial mastectomy for a lump I had found. The surgeon did a mastectomy and lymph nodes on the right side and reduction on the left side. I had chemo and radiation second. I know that this is backward but seems to have worked so far. I am surviving. It has been one year tomorrow. You can talk to me anytime. I am going forward. I hope you are well.

bethd1946 said:

I just got on this message board so I'm really new at this. I too was diagnosed with IBC but only after they went in to do a partial mastectomy for a lump I had found. The surgeon did a mastectomy and lymph nodes on the right side and reduction on the left side. I had chemo and radiation second. I know that this is backward but seems to have worked so far. I am surviving. It has been one year tomorrow. You can talk to me anytime. I am going forward. I hope you are well.

I just found the web site and trying out this message board for the first time. I was also diagnosed with IBC after surgery because the 6.5 cm tumor was not seen on mammogram or ultrasound. I only showed microcalcifications on the mammogram. 14 out of 26 nodes were positive. I had no other symptoms such as the redness of the breast. I started chemo nine days after surgery followed by radiation that I have just completed. I did pretty good through the dose dense regimen of chemo and radiation wasn't too bad. My skin is healing at the moment. I am estrogen negative and her2neu postitive and was wondering about others in my situation. I am continuing the fight and feel pretty good at the moment and hope others are doing well also.

matthatter1127 said:

I was diagnosed with IBC in January. Have had two chemo treatments. The doctors always seem to start with percentages, but you can't listen to them. I'm older than you, but just as scared. I have a 16 year old son and want to stay around to see him grow up as well. I am looking for survivors. This is a rare form of cancer. My doctor only has one other patient with it and this woman has survived for 8 years after going through the regimen we are going through and then she had mastectomy and radiation therapy. We can only pray that we will be lucky like her. I am sure that overall physical health comes into play quite a bit.

If your doctor has only seen one l other patient with ibc, I suggest you go get another opinion from a doctor who is more well versed in dealing with this. You will need care from someone who is up on the latest with this form of cancer. Let me know how you are doing. I have ibc and an just finishing radiation. I did very well in chemo--that is, the cancer responded very well. Also, I had a modified radical mastectomy. Now I am about two weeks post radiation and am waiting to regain all of my energy. What a long, long road this has been.

Hi Tammy,
I was diagnosed at age 56 with IBC on Dec. 4th, 2004. The form I had was a tumor accompanied by a fever that ran from 99 - 104 degrees until surgery was performed. Everyone says mine is a negative case but I survived. I had a bad reaction to the one cycle of chemo I had. I was placed on Femara 2.5 mg --one pill a day and three weeks later I began the first of 30 high dose radiation treatments. A radical mastectomy was performed 8 weeks later where the breast, consumed by the tumor, 3 out of 5 lymph nodes removed and some pectoral muscle removed as well. My follow up is the Femara and I am currently coping with lymphedema and neuropathy. I have ben cancer-free for 3 years now. I am without medical coverage and am currently on disability. Fatique is a constant companion off and on because of the lymph. I know of an RN that has survived this form of cncer for over 7 years. It is a scary disease. Ask qustions and challenge everything. Knowledge is power and you need to become an active participant in your treatment. Feel free to contact me if you want to chat. If it matters -- I am single -- no childen.

pepclady said:

Hi, my name is Dawn. I was diagnosed with IBC two years ago in July. I had 8 treatments of chemo, mastectomy surgery at Thanksgiving, Tamoxifen for a year and a half, 33 radiation treatments and now I am taking Femara. I work full-time and I'm a full-time mom to six great kids. I'm fighting this with everything that's me, with the support of family and friends. I want to see my kids grow up, graduate, get married, have kids, etc. I'm not giving up without a fight. You can email me anytime. It would be great to speak to someone else who has had it. No one I know has had cancer, so they don't understand.

hi dawn.....my name is toni....i was diagnosed with ibc in may, 1999 after 6 months of itching, redness, heat, swelling and pain in my left breast......it was misdiagnosed as silicone mastitis because i had 24-yr old silicone implants....anyway.....when the implants were removed they found a 10cm mass and a walnut-sized lump under my arm where the lymph nodes had fused. saw several doctors in mississippi and prayed a lot.....ended up at m.d. anderson cancer center in houston, tx.....thank god....they were great.....i was in a clinical trial.....4 rounds of dose intense taxotere/adriamycin to try and shrink mass and prevent spread.....modified bilateral mastectomy....took much of chest wall/muscle and 24 lymph nodes (21 were malignant)....then had 6 rounds of cmf.....took gm-csf shots during chemo...then had 7 weeks and boost of radiation....then 5 years tamoxifen.....and since then have been on three different aromatase inhibs.....my prognosis was terrible..i learned how to read med records and pathology reports......but, like my dr. at m.d.a.c.c. told me.....somebody has to be that 2% that survives....only long term side effect of chemo is "chemo brain".....take adderall and it helps!....nerve damage from surgery left me with terrible chronic back pain....radiation shrunk my left side a lot and caused myfascial pain....and lymphedema(which is not that bad)....still don't have energy i used to....but when i eat well and exercise i feel better.....my current diagnoses are fibromyalgia, chronic fatigue syndrome, and chronic myofascial pain syndrome.....found a great pain specialist (physiatrist) and physical therapist who does myfascial release therapy....will be on maintenance pain meds forever, i guess....but finally have the dosage ok.....i can work and play with grandkids....a chiropractor helped also....with pain and lymphedema.......i still have to go to houston every 6 months.....but have pretty good prognosis now.....also, be careful about bone loss with tamoxifen/femara......i'm having problems with that now.....taking a nasal spray called micalcin and doing weights and pt...i do lots of vol. work with acs and that helps me....makes me feel like i'm doing something to help fight cancer........be glad to talk anytime about anything....toni