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Hi, I'm new and would love some answers

csgossard
Posts: 13
Joined: Apr 2002

Hi everyone, I'm new at this so please bear with me. I hope I don't ramble too much.

Last August, I had my yearly mamo and a mass the doctors had been watching since 1993 had developed some micro calcifications. A stereotactic breast biopsy was done which showed a high grade, major solid tumor with multiple part breakdown in center infiltering ito breast. In October they did a segmental mastectomy. That biopsy report showed DCIS, Modified Black's Nuclear Grade 2 (Moderately differentiated), Residual, Cribriform Type, present in 3 sections with maximum dimension in single section 1.5mm, reactive changes at previous biopsy site, margins of resection widely free of tumor, Hyalinized fibroadenoma, Fibrocycstic chanes including duct ectasia, aprocrine metaplasia, and ductal epithelial hyperplasia without atypia. Whew! I haven't a clue about half of that but thought I should tell you due to all the problems I seem to be having. Some of you may recognize some of it and be able to put my mind at ease.

I went through 6 weeks of radiation. Had some problems with being tired but towards end, my skin burnt terriably and was very painful, even with ointments they gave me. But, I survived. Those treatments ended mid December, 2002.
The whole time I was having radiation, my breast was very swollen (very painful at times) and always very warm to the touch. My doctor said this was normal. Is that true? Did you have that?

Sometime in February, my breast started swelling again and was very warm. It finally got so painful, I went back to radiation center and they put me on a strong antiobotic (augmentin, I think) for 10 days and told me I had a form of mastitus. Ten days later it was not better and I started bleeding through nipple so I went to see my surgeon who did lumpectomy. He immediately inserted a drain tube and put me in hospital for week to give me some very strong antiobotics thru vein. Some of swelling went down but fever in breast was still there and redness. They sent me home with drain tube which was left in 2 weeks and then removed.

The bleeding continued, at times very heavy and I had sharp pains in my breast also. They had me come back and did ultrasound and said nothing showed up to be abnormal. Bleeding continued.

Two weeks ago, they injected dye into the duct that was bleeding and found it was coming from the area of the surgery. This area you could see on the ultrasound and was quite large but no one seemed concerned about it. They also did my 6 month mamos which also showed nothing unusual. The following day, they did surgery again to "tie off" the duct that was bleeding and removed a large blood clot from the area and biopsy the area because I was concerned about IBC. The biopsy came back negative, thank goodness. They also told me that the blood clots happen but are unusual. Is this true? Have any of you had this problem?

To conclude this long story, my breast is again swelling, has fever in it, is red and getting hard in the area of the surgery (as it did before), so I'm afraid nothing has been "fixed" other than they stopped the bleeding but also stopped the way of escape for the blood that continues to build up in my breast. Bye the way, I had an excessive amount of bleeding when they did the first biopsy also which they told me was not common. I do not take any type of blood thinners or aspirin so that's not it.

Have any of you experienced anything like this or know of anyon that has? At first I was afraid of IBC, because I had a lot of the symptoms but they tell me I don't have it. I'm going to a well known cancer center in Houston and my doctor is suppose to be one of the best. He seems stumpt also but thinks he fixed it with this last surgery. I'm to call them this week and let them know how I'm doing which I will do on Thursday. I'm just hoping to have some possible suggestions or questions from some of you that I can present to them when I call.

I'm sorry I've rambled on so. I'm scared that there is something there that they aren't seeing or something. Something is causing this problem. It isn't normal, is it? Do any of you know of anyone else that has experienced this? It would help to know that I'm not the only one going through this.

Thank you all in advance. I wish you well in your struggle also.

Connie

maud
Posts: 183
Joined: Nov 2001

Hi Connie,
Welcome to the site so glad you found it.This is the best place to share your thoughts and feelings. Everyone here is wonderful and very compassionate and caring.I am so sorry for all you have gone through, I didn't have any of the problems that you have had, but my thought and prayers are with you and hopefully someone on here can relate to what you are going through.Please keep us posted.
God Bless
Debbie

nasa2537
Posts: 317
Joined: Apr 2002

Hi Connie...wow...you have been thru the wringer and back again! I'm so sorry you're having all these problems. I was diagnosed last August by routine mammo also. Mine was stage 1...tumore ended up being 1.1 cm, negative nodes. I had no chemo, but had 33 rad tx. The only part I can really help you with is the heat and swelling & pain during radiation. My breast got really hot. I got pretty pink, but never had any really bad skin break-down. When I got to my reddest point, they switched over to my boost treatments and then went back to finish the regular ones...it gave the boob a little time to calm down. My breast was very tender after about half-way thru radiation. I was done Nov. 16th, and now, it only gets really sore right around my period. Every once in awhile, I get pain under the arm and on the side of the breast that feels like someone hit me with a baseball bat, but the docs all say that's from stretching during my aerobics. So, the pain, swelling, and heat are normal during radiation...I know other women who have had it, too. I don't know what to tell you about the rest. I would be tempted to go for a 2nd opinion, but then, if it's a reputable cancer institute and Dr., I don't know. Just tell them they NEED to get this cleared up before you lose your mind. This has to be so difficult for you, and I really am sorry you are having to deal with it. I wish I could help more. I wish you the best, and please keep us posted here on how you are doing. Or you can e-mail anytime you want to chat. God bless...Cyndi
millionairs2@aol.com

jeancmici
Posts: 682
Joined: Feb 2001

Connie,

My heart goes out to you with all this pain and swelling and UNCERTAINTY. A thought came to me - all the doctors in a good institution are not equally good.

If your doctor is stumped, pin him down as to what research he has done to get an answer and who among his colleagues has he discussed this with. If he is a go-it-alone person, (if I don't know, nobody else does either type), go to another place for some help.

Wishing you some help and relief soon and good health to follow.

Jean

shirlann
Posts: 235
Joined: Oct 2001

Hi, dear Connie, I am so sorry you are having this many problems! Bless your heart, you should be just fine at this point. I will tell you that I had NO infection or breast swelling, but I did have a very "hot" breast for at least a year. It was funny to put my hands on each one and feel the one hot a a firecracker. This is of no help to you because there is no way to tell whether you have a simple radiated breast when you also have a massive infection. I will be honest, if you can afford it, go to the nearest breast cancer center. If you are near L.A. go to UCLA. I think your doctors have done absolutely nothing wrong, but the stumped I don't like. It is time to have a "true" second opinion, and that means leaving the building. This is hard, but you can get all your mammo's, slides, etc., records, and send them ahead to UCLA and they have a program where everything is looked at twice, the whole team (surgeons, pathologists, radiologists, even a psychologist)review everything and then you are seen and told what they advise. It only takes one day. You can come and stay with me in San Diego if money is a problem, we will drive you and your husband up on the day. And please, always feel comfortable "rambling on". This is exactly what all of us are here for. Fortunately, it doesn't sound to me as though you have anything wrong that relates to cancer. It sounds like your breast just has not recovered as it should from the rads and the surgery. God bless you, dear sister, and hugs & kisses, Shirlann

ksfc
Posts: 252
Joined: Apr 2002

Hi Connie,

I'm curious. When they were treating you for an infection, did they culture it to see what the bacteria was? I ask because I had a staph infection in my lymph node incision and it was red and hot like what you're describing, and I got pretty sick. The incision was re-opened and drained and I was treated with antibiotics that would work for that type of infection. Maybe they haven't cleared up the original infection...just a thought - FC

bullfrog13's picture
bullfrog13
Posts: 216
Joined: Apr 2002

Connie, Wow sounds like you have having an ordeal... while I have been thour alot I think it may fail in comparison.... feel free to email me..or IM me.. anytime. while I dont know that i'll be much help..other than a shoulder or an ear.. Good luck and update us after you visit Houston... im in Fort worth..

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