IBC DIAGNOSED, LETS SHARE OUR STORIES!
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CT scan results are in, and I need a PET scan ASAP as some enlarged lymph nodes showed up in my chest, as well as that pesky lung lesion still being there. This means the cancer may have come back.
Tom has taken the night off to be with me, and we would appreciate your prayers.
Bette
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Bette: Praying hard that the cancer has not come back.
Hugs,
Monika
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Bette, I am praying for every day!!!
Monika, I was diagnosed just a few days before you... I was getting TCH, but I had a bad reaction to the T, so I'm getting AC now, and will restart H after I'm done. I hope things go well for you!! Much Love to you all!! jessica
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Thanks Jessica. I hope everything goes well for you too.
Hope everyone had a good weekend. I had fun at the wedding I went to on Saturday. Now it is time for chemo #3 tomorrow, ugh!
Hugs,
Monika
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Monika and Jessica, hope all is going well with chemo!
I am having a rough night. Full of fear about what the PET scan could show. Tom is a work, so I am alone. He will be home in the morning and I intend to hold on to him really tight.
Bette
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Bette:
If I lived near you I would come over and give you all the support you need while Tom is at work.
Sending you big hugs! Laura
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Laura, thanks
Tom got home from work at 9 AM, and after holding and hugging for awhile, he had to go to sleep. He will be up this afternoon, and then we will share a meal and some time before he goes back to work. I know that nurses have to work at night, but getting used to the night shift is harder on me than I thought. I have trouble sleeping when he is not here, but in the daytime, I am wide awake and want to talk, while he has to get some rest.
One thing I did last night was start a website on CaringBridge.org. I will use it to update family and friends with any new developments. I think I will enjoy the journal feature. It is sort of like a blog.
Bette
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Let's help one of the good guys win for once!! Will you help a bc sister by voting today? I know it's off the topic... I hope it's okay to post... but this will only take a sec... voting ends at 5p.. vote as often as you can! TY
http://www.aeroforceone.com/index.cfm/pk/view/cd/NAA/cdid/1177058/pid/1175576
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Today was a day for crying. I guess I had to get it out of my system. On one hand I know that God has everything under control, but on the other hand, I am so afraid of the cancer coming back and having to go through treatment again. I got so sick from chemo the last time and had to be in the hospital multiple times.
PET scan is at 11:45 AM tomorrow. Would appreciate your prays and good wishes.
BEtte
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Prayers for you Bette. Will be thinking of you tomorrow.
Hugs,
Lexi
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Bette, hope your scan went well today. Praying for great results!
Monika
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The scan went well. Report on Wednesday.
I am very tired, but cannot fall asleep.
Bette
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Bette:
Just thinking about you. Keeping my fingers cross for good news on Wednesday.
Hugs
Laura
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Bettelou
I will keep you close in prayers and praying for great news.
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Laura and FlaLady, thanks. I will keep the BCO community posted. Hoping for sleep tonight. Tom is here with me so that will help a lot. Resting in the peace of God.
Bette
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PET scan showed three areas of possible cancer. A biopsy is next on my schedule. If it is stage IV disease, the treatment may be hormonal or chemotherapy. I have to stop taking Femara due to side effects.
Right now, I am at DD's home in Baltimore, resting up for a day at the Avon Foundation Breast Center at Johns Hopkins tomorrow. Emotionally I feel numb. I am making an effort to praise God for all the good things in my life, including Tom, family and friends.
Bette
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Positive and encouraging visit to Johns Hopkins today. Things are not as bad as I imagined. I still may be able to get reconstruction in six months. My mammo was clear!
We are staying in Baltimore one more day as the biiopsy may be scheduled tomorrow.
Bette
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I am a 59 year old always healthy woman, diagnosed with IBC last October. The only noticible symptom I had was a nipple inversion...I was stupid enough to ignore it for several months then I noticed the right breast was getting larger. My breast never got discolored or anything, though I noticed the thickness after I was diagnosed. I never had a discharge or anything. I finally got the nerve to google " breast infection" and it rolled out IBC. Clicked into that and knew that's what I had. I called my GYN the next day ....he sent me straight to the Women's Clinic. I knew this disease was misdiagnosed alot and I was ready to argue or get to the nearest large cancer center, but I was told by the nurse practitioner that day she believed I had IBC and the biopsy came back positive the next day. The fact I was diagnosed accurately and quickly told me I was in good hands right here in my city.
I went through all the scans and thank God no mets.
My oncologist started my chemo as soon as my medi-port was in about a week later... the A/C cocktail (adrimyacin/cytoxin ) I had 4 very very rough rounds of the A/C....a treatment every two weeks and I was on a 48 hour drip. The tumor was completely gone by the 3rd treatment! Then after that I had 4 rounds of Taxol. My chemo lasted from Nov/2008 - April/2009. Next, I had my right breast removed in May along with 10 lymph nodes.
The nodes did test positive for cells but it was sort of expected. The good news is my surgeon sent the breast to pathology of course and he calls back up to the operating roon wanting to know where the tumor was supposed to be. My surgeon literally went to pathology to show him.
They downgraded me from Stage 4 to Stage 3. I am now taking 34 radiation treatments and will be going on the Tamoxifen soon. Reconstruction is also on the table!
IBC does NOT mean a death sentence ! Treatment has come a long way and women are surviving IBC as well as any other BC. My Doctors are extremely pleased with the way my body responded to treatment. I was speechless after the diagnosis but I managed to vow this was not going to kill me!
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Hello Bette, sorry I didn't check in sooner, how did your PET go?? My prayers are with you!! Much love, jessica
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Jennifer, your story inspires my, I am going to have my 4th AC on 7/14, it has been very difficult for me as well. I also get Herceptin (for a year). I'm going to have a bilat mast and total hyst after chemo.
Bette, I am praying for you every day.
Much love, jessica
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Oh Jessica you are so much younger than me. I hate you are having to deal with this at such a young age. You are in my prayers along with the other sisters on here and all around. The A/C is a tough one but it is very aggressive and attacks our type of BC with a vengeance. I'm not well read on IBC as I wasn't one of those who had a hands on approach when I was first diagnosed. I went to the internet about my symptoms and learned just enough to know I was in trouble.
I blanked out it seemed every time we met with the Drs and my husband and 30 year old daughter took over the wheel for me. All I could do was cry and say " fix me" I am just now coming on these forums and reading more about my type of cancer. I was too frightened in the beginning but now that I know I'm going to make it I'm getting stronger emotionally. As I posted on another thread I had my mastectomy on May 11th and I still have not looked at my surgical site. I am trying to get over that hurdle now and I feel so wimpy because I'm struggling so with this. I bathe and shower in a sports bra. Can you believe it?
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I have done really well since after the first days of the diagnosis. All scans came back clear......the tumor was gone by chemo treatment three.....the surgery was really a breeze. My only disappointing test result out of all I've been through was the 10 out of 10 nodes tested positive. People had me terrified about surviving if it was found in the nodes. The pathology report says there was no difinitive evidence of lymphvascular invasions. Not sure what that means because
I was in a zone ( as usual) when my surgeon discussed all this with us, but she seemed very positive and gave me no reason to think I am a hopeless case and my daughter and husband assured me I wasn't handed a death sentence with the node thing, but I was terrified. I have 4 of 34 rad treatments behind and that is going very well. I almost feel like I did before this monster invaded my body. Yes, God is good and His hand has kept me steady since last October.
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Hi Jennifer, I expect they are going to take many nodes when I have my mastectomies, 3 looked suspicious on my PET and MRI, and they did a biopsy on one and it came back positive. I have been told that if many removed nodes are positive, I will need more chemo after surgery, becasue of this my Onc wants me to have 12 more rounds of chemo after my last AC on 7/14. It will be TH, (Taxol & Herceptin). I'm not sure I want to have all this chemo, I'm not tolerating AC very well, and when I first started tx, I was getting TCH (Taxotere, Carboplatin & Herceptin) and I had an adverse reaction to Taxotere, Taxol is in the same class, and my Onc said I will need to be inpatient for these 12 treatments as I am likely to react to the Taxol. I would like another PET before the final decision is made for more chemo. I want to have surgery after my last AC, but I wonder if I'm being too risky...
Also, is anyone taking Tamox now?? I was told I would need this too, but I am postmenopausal (since I was 29, no one knows why my ovaries failed), and I have high chloesterol which puts me at increased risk for stroke if I take Tamox... I don't know what to do.
Bonnie, you are awesome!! You always say the nicest things, and you are so knowledgable.
Jennifer, thanks so much for coming to this thread, please keep in touch!!
Much Love, Jessica
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It's hard to believe, but we are STILL waiting for my biopsy to be scheduled. Being seen just before the July 4th holiday probably did not help this situation.
Today I told Bible stories to the children at our church. They loved it, and it was very exciting and fulfilling for me. It also kept my mind off of my health concerns.
I will let you all know once I have any news. I am praying for all my BCO sisters.
Bette
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Learned today that a needle biopsy is too risky due to the location of my lesion. They said my lung might collapse. So now the pulmonary specialists are looking at my scans to see if they can do a bronchoscopy. I looked it up and it does not sound pleasant.The end result is more waiting. At least today I got three progress report phone calls from a fantastic CRNP at the Breast Center. It makes it easier when you know what is going on.Bette0
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Hi Bette, I am a nurse, and I have assisted in bronchoscopies... though I have never had one. They use "conscious sedation", you will not remember the procedure or feel any pain. You may have a sore throat or hoarse voice when it is done. I am praying for you every day!!! Much Love, Jessica
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Thanks, Jessica. That is what I needed to know. I heard that I would be awake for the procedure and was really anxious. But if they use sedation, that will help.
We learned yesterday that due to the surgery schedule, the pulmonary specialists will not be reviewing my case until Monday. We should hear on Monday or Tuesday.
Bette
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Hi everyone I'm Lyn, a 30 year old mom of a 3 year old and a 2 year old diagnosed the end of April '09. I'm stage IIIb. I just found this site, but have a blog at http://lynkelley.wordpress.com that I started at the beginning to keep track of everything, now it's bigger and I've met several other IBCers. I went to the ER on Easter, the doc referred me to a surgeon who was an a#$#$, but I got an us/mamm that day. The radiologist told me then that he believed it was IBC and not mastitis and we did a biopsy 2 days later. I got the results a couple days later, and was into my onco 2 days after that starting AC (Adriamycin/Cytoxin) two days after that - because of a weekend. Then came the port plus scans and tests, and all the usual IBC rush that happens. I finished 4 doses of the AC every two weeks at dose dense, and started Taxol/herceptin last week, had my second dose this week. I will have 12 weekly doses afterwhich will be a mastectomy plus lymph nodes on the left-cancer side- and a bilateral on the right - no cancer but my choice and my doc supports it. Then 6 weeks of radiation followed by a year of weekly Herceptin, then another year of herceptin but probably not weekly. I'm happy to find this forum and read everyone's stories and experiences who have gone through this part already, and if you have a personal blog I would love to read it as well!0
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Welcome Lyn! How is your chemo going?
I have a sort of blog on CaringBridge.org under the Journal tab. I have only been doing it since my current concern with mets. Wish I had started at the beginning, because it really helps me to write about it.
Bette
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The AC was alot harder on me than Taxol appears to be. Of course I've only had 2 doses of it and am aware of the side effects, but still it doesn't wipe me out like AC did.
I have only visited caringbridge a little bit, I will have to go check it out more and look for you. Thanks for the welcome!
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