CancerCompass message board discussion started by Liz p on 2/6/2005 http://www.cancercompass.com/message-board/message/all,1546,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I received a diagnosis of non-invasive DCIS in June 2004. In July I had a lumpectomy and the two sentinal nodes removed neither of which had any signs of cancer. Raidation (IMRT) began in August and lasted six weeks (until 10/8/04). One week following radiation I developed a fever of 102 degrees with the typical alternating hot flashes and chills. I also noticed a marked increase in pain in my breast. A call to schedule an appt with my rad onc found that he was not in that day, so I met with his associate (who had never seen me before). He told me that I was probably just trying to fight off catching a cold or something since my immune system was basically non-existent after the radiation. The fever jumped most every night (102 or so) for the next three weeks, along with increased pain in my breast, until early one Saturday morning the previously healed incision popped like a pimple and a large volume of very smelly fluid began gushing out. A phone call to the on-call surgeon was followed by a quick trip to the emergency room and then admittance for yet another surgery to re-open the wound and clean out the infection. Now, some 10 weeks later I'm still dealing with what's left of my open and very hard-to-heal wound (residual effects of radiation). I recently met with a specialist who told me that the radiation caused the abscess. At this point, I am eager to chat with anyone who has also experienced a similar situation---abscess of lumpectomy, etc. Thanks...Liz Liz p Sun, 06 Feb 2005 00:00:00 GMT I recently had an abscess of the abdomen after radiation also. I had a very large tumor removed from my sigmoid colon with metastasis to the overies and 2 lymph nodes. I started radiation in August of last year. I had 16 treatments and was to sick to continue. I returned to work and everything seemed to be normal. Around Christmas I noticed a swollen area in the lymph nodes on my neck. My surgeon said I was just trying to fight off a virus. Very shortly after that I noticed that my belly seemed to be swelling abnormally. I went in for a colonoscpy and petscan the next week. The colonoscpy was clear but the radiologist on duty said that he saw metabolic activity in the abdomen and the liver. He suspected that the cancer had returned and it was attached to the abdomen wall and that there was nothing that could be in done in this case. He said he wanted to do a contrast catscan to confirm. The catscan showed a large mass in the abdomen and something suspicious on the liver. The radiologist then wanted to stick a needle in my belly to check the mass. My surgeon stopped him saying that that would seed it if it were cancer. My surgeon decided to go back in the same incision and address the issue with surgery no matter what it was. It turned out to be an abscess of the abdomen. There was more than a liter of fluid involved. I looked 6 months pregnant. I am recooperating at home now and all seems well. I have asked what could have caused this and the answers I got were that they thought that I leaked in the colon area after surgery. I had a lot of cancer and was almost perferated in that area. Then there was an issue that they came up with an extra sponge on the second surgery. My surgeon says he does not think that was the issue because I would have never recooperated from the first surgery if there had been something left behind. Your story seems to make a lot of sense to me. I am going to speak with my surgeon about this issue. Thanks so much for sharing. Oofkin21 Tue, 08 Feb 2005 00:00:00 GMT I'm glad you are feeling better now. Another doctor recently asked whether they had cultured the infected fluid/area to see what the infection was, and when I told him no, he immediately swabbed the area and sent it to the lab. The finding of staff (a very common bacteria on human skin) told them that it had entered the wound during or after the surgery, when the wound was accessible since the incision was not yet healed. That's why they know it was there prior to radiation. And, after surgery the tumor bed naturally fills with fluid (the body's response to the newly created "hole"), and then the radiation "cooks" it and makes it become a problem. I've learned at this point that doctor's typically react to symptoms rather than considering the possiblity that the stereotypical course of action may not be the correct one at the time. Best of everything to you. Liz Liz p Tue, 08 Feb 2005 00:00:00 GMT Liz, I was diagnosed with non-infiltrating DCIS in November '02. Had lumpectomy, radiation, and am on Tamoxifen. I've had no problems. Did the surgeon put in a drain after removing the tumor? A narrow vinyl tube inserted just below incision with bulb on the end to collect fluid. Had it for a week and recorded amount of fluid that drained out. Surgeon removed it after a week. Mary D. Sandpiper Mon, 11 Apr 2005 00:00:00 GMT Liz, I was also diagnosed with non-invasive DCIS in September 2004. Surgery was outpatient and I left with a drainage tube that was removed five days later. The morning after the lumpectomy I had to return to the doctor's office with mini-stroke like symptoms (bp 204/125 and hr 160 bpm, extremely diminished vision, numbness spreading from hand up arm and into face, somewhat impaired mental faculty). The nurses called 911 and an ambulance took me to the hospital where I was admitted for just over 24 hours until symptoms improved. To make a long story short, radiation was postponed due to further complications, but we finally completed the 36 treatments mid-January 2005. It is now nearing mid-April, and I still have a great deal of pain at times, it seems especially where the drainage tube was. Doctors say that it is normal, but I'd like to know about yours and others' experiences. How long did you continue to hurt? Should I keep questioning about the pain? Thanks for your help.-Teresa Teacheng1 Wed, 13 Apr 2005 00:00:00 GMT Teresa and Liz, Everyone's experience is an individual thing. But I truly had no problems or pain due to lumpectomy or radiation. I don't know if it was due to a low dose or what, but I had very little skin reaction (or reaction of any kind) to radiation. No fatigue. Having virtually no side effects to Tamoxifen. The worst of it all was the "cancerhead" (as it's called on another message board I visit) -- how a cancer diagnosis messes with your mind. I'd say I'm 99% over that now. Mary D. Sandpiper Wed, 13 Apr 2005 00:00:00 GMT I was so glad to read your message before I had radiation, and now that I'm done with it I must tell you that I had no side effects either. A little bit of a sore nipple for a while but used Aquafor and a no-stick gauze pad I picked up at the drugstore and it quickly healed. I feel very sorry for the women who have horrible experiences, what a nightmare on top of a DCIS diagnosis, but for those who may be reading this and are frightened, I'll say it again...it all went very smoothly for me. In fact, I had my last radiation treatment at 7:45 am and flew to Disney World at 10:50 am that same day. Although I will admit to asking for a doctor's note that indicated I couldn't stand in the sun for very long...alleviated some of the wait for the rides. I must tell you I have no guilt about that at all!! What the hell, I had been through 7 weeks of radiation treatment and a lumpectomy, dammit! I deserved a break!! But I had no fatigue (thank God) and in fact I started a rigorous exercise program of walking or biking 10 miles three times a week when I started the treatments. I never really exercised before this. My doctor told me it would help alleviate some of that "cancerhead" and just general depression that I had following my diagnosis. And she was right. I have heard that several large breasted and heavy women tend to have horrible experiences with skin reactions but my oncologist told me only 10% of all patients receiving radiation for breast cancer experience side effects. Regardless, if someone does have side effects she told me they can be quite debilitating...but for anyone reading this who may be nervous (and you must be crazy if you aren't nervous!!) just know that many women get through this okay. Cathrun04 Sun, 19 Jun 2005 00:00:00 GMT So glad to hear that I am not alone with this breast abscess. How long did it actually take for yours to heal. Mine also broke through my incision site and am now having home health care come in daily to clean and repack my wound. How awful! Did you see a specialist about your abscess? I know this happened over a year ago for you, but hopefully you will still get my message. Thanks, Goeken Goeken Sun, 23 Apr 2006 00:00:00 GMT Hi Goeken, When my abscess happened, the surgery to clean the abscess was performed by the partner of the surgeon who performed the lumpectomy, since he was the one on call that Saturday. There was no specialist at that point. I also saw my radiation oncologist since I was scheduled for a follow-up exam (it was about 5 weeks after radiation had ended). He was fascinated to see inside the wound he'd just finished treating. Just a comment: at no time was a drain shunt ever placed in my incision after any of the three surgeries. After one week of twice-daily changes to the wound dressing (basic gauze and tape), my surgeons convinved my insurance company to allow (and therefore pay for) me to be placed on "The VAC" from the KCI company: http://www.kci1.com/867.asp, for a picture of a machine very similar to the one I "wore" for 4 months. The dressing involved pushing medicated foam into the open wound (that was fun!), covering the skin all around wound with plastic tape to create an airtight seal and finally placing a gadget on the tape that contained a small vented hole that faced into the wound, and had the beginning of a 3' length of rubber tubing on the other side. The rubber tubing was connected by another 3' lenth of tubing that connected directly to the machine's collection container. I wore the machine on a purselike strap wherever I went, or it sat next to me on the couch if I was relaxing by the TV, or it sat on my nightstand while I slept---all the while being connected to my wound. I had to be careful not to turn over while sleeping or I'd tangle in the tubing and the machine would make a terrible noise. I also had to plug the machine in at night to recharge the battery to allow me to be away from a plug the next day. The first day they taped me to the machine, they warned that when they turned the machine on for the first time, it would probably hurt since it was going to create a vacuum pressure to "suck" out the continually draining fluid from my wound. "Probably hurt" was the understatement of the year since when they turned on the machine I nearly fell to the floor with pain, and the instantaneous tears led the surgeon to say "Well, it looks like we're going to need some pain pills." After having taken no pain meds throughout the previous surgeries, it was now something I could not avoid. My personal situation was such that I opted to stay with my parents for several weeks while the wound was healing and I was wearing the machine. Being on pain meds I couldn't easily drive myself to the wound care center 3 times each week. It was during my stay with my folks that I saw a specialist. His business card was filled with degrees and titles and he also was on faculty at the university's medical school. I went prepared with piles of medical records from my past treatment and it was he who told me that it was the radiation that caused the abscess. He said that it was a stapf infection that would have only had the chance to enter the wound at or soon after the time of surgery. He was in no way implicating my surgeon, but said that stapf is present on our bodies all the time, and could easily have worked its way into the post-surgery wound. At the time I saw the specialist, I had been on the VAC for about 6 weeks, and he told me the treatment appeared to be working well, that no hyperbaric treatments would be necessary (hallelujah). The problem with post-radiated tissue is that it's basically been fried including all the tiny blood vessels that promote healing. The vaccuum pressure created by the VAC was essentially forcing the tissue to heal by drawing new tissue through the fried tissue by virtue of the vacuum pressure....but, boy did it hurt! Yes it has been a year, but I wore the machine until nearly one year ago, and then finished the wound healing with some simple gauze and tape along with a special salve. At this point, I find that the abscess and resulting healing is what shrank the size of my breast (something that surgery and radiation had not done). At this point, I'm currently undergoing physical therapy (and more pain) as they try to soften the extremely hard areas of scar tissue all around the wound and throughout the breast. I still experience pain perhaps as the tissue continues to revive from radiation from so long ago, but also as the PT people knead the hard spots. The pain typically happens a few days after PT as I experience pain throbbing and pulsing deep inside the tissue. I'm still not comfortable with parts of the new me (mamed and irreparable). I still hurt deep inside my soul, and feel tremendous empathy for others who experience anything remotely like what I experienced. I'm so sorry for your pain and wish you the very best as they pack you full of gauze each day. Keep your spirits high, know that the wound will heal and all will be fine! My thoughts and prayers are with you... Liz Liz p Sun, 23 Apr 2006 00:00:00 GMT Hi Mary, No, the surgeon did not place a drain in my wound for either surgery. Strange, don't you think? Liz Liz p Sun, 23 Apr 2006 00:00:00 GMT Hi Teresa, Yes, pain continues...and it varies in it's intensity for no apparent reason. Sometimes I would go for days or weeks with no pain, then would experience several days with pain. I just figured it was the breast tissue continuing to "wake up" and heal after having been fried by radiation. I've spoken with many others who also have had varied but ongoing experiences with pain. It does diminish over time...be patient. Perhaps a heating pad or soft massage would help. Liz p Sun, 23 Apr 2006 00:00:00 GMT Catherine, I love your story! I left town about after my radiation as well. It was about a week after radiation had ended, and I was going to spend some time with my parents as a "reward" for all the fun and games with medical stuff during the previous months. In fact it was the day I was to leave town that I began experiencing the pain of what would become the abscess. Yes, I am very aware that the majority of women make it through surgery and radiation treatment without this kind of added complication. In fact, at first, I thought that the abscess I experienced was something that almost never happened. And that's when I began to explore the web even more to discover that it wasn't as uncommon as people want to believe. In addition, as you mentioned, the "cancerhead" part of my experience caused me great anger and frustration in so many ways, particularly with the added complications. My life basically fell apart--but that was because of my specific set of circumstances. I guess the bottom line is figuring out if there's any way my experience can help others in similar situations by either being forewarned, or having increased information to perhaps avoid the complications altogether. Now, one year after "graduating" from wound care, while I find myself in physical therapy to attempt to loosen the severly scarred tissue, I'm happy to say I'm in a different place emotionally. Sure, there are still those occasional days when I wish it had all just been a bad dream, but the reality isn't as stark anymore and life does move on. Hope you're doing wonderfully! Liz Liz p Sun, 23 Apr 2006 00:00:00 GMT Hello Liz p, Thank you so much for the great information about your breast abscess. Mine has been draining since April 5, 2006 and I am having home health care come in to repack and redress my wound each day. You said that at first you had a surgery to clean out the infection. I never had that. My surgeon came to the emergency room and did a minor surgery there - cut open the break through more so he could remove a lot of the infection, then he left it open, packed it with packing gauze, covered it with a gauze pad, and sent me home. I am also intrigued about your "VAC". My wound is still draining, but not as much as before. They are now placing some ointment in my wound to help dry up the secretions, so the good breast tissue can come through. I have an appointment with my radiologist in May,but he is aware of what happened because I called and told him. I was never told that radiation could have caused this. If you don't mind, I would like to keep in contact with you about this. It just makes me feel so much better to know that I have a friend that understands what I am going through. Thank you so much!! Love ya Goeken Goeken Sun, 23 Apr 2006 00:00:00 GMT Hi there, Yes, please keep in touch. You can find me at: --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. I went to the emergency room the morning the wound "popped" but the surgeon said that he had hoped he could clean it there, but found once he saw me that he really needed to go ahead and admit me so he could have full access to an operating room. My wound was pretty large, so I think that's what he was thinking. According to the specialist, the radiation basically "cooked" the infection and caused the abscess. For the week between my abscess surgery and when the VAC arrived, they were packing my wound twice a day. It took an entire roll of 4-inch wide gauze to fill my wound each time. It was actually kind of funny when we would pull it out to clean the wound and re-pack. It just kept coming and coming as we pulled. My rad onc guy was amazed the day I was in his office for a re-check (after the abscess had happened), and the surgical nurse wasn't there yet to do the wound un-pack/re-pack. I just went ahead and started pulling out all the gauze. He stood there and just stared as I kept pulling out thing very long piece of fabric. The wound was up high on the right--it was kind of like having a very strange pocket right there attached to my body. I survived a lot of green salve that was very expensive as wound care progressed, plus they had to keep using a little knife to scrape away icky stuff that kept growing inside the wound between changes.....ouch! Hang in there....you'll be just fine! Liz p Sun, 23 Apr 2006 00:00:00 GMT  On 6/19/2005 Cathrun04 wrote:I was so glad to read your message before I had radiation, and now that I'm done with it I must tell you that I had no side effects either. A little bit of a sore nipple for a while but used Aquafor and a no-stick gauze pad I picked up at the drugstore and it quickly healed. I feel very sorry for the women who have horrible experiences, what a nightmare on top of a DCIS diagnosis, but for those who may be reading this and are frightened, I'll say it again...it all went very smoothly for me. In fact, I had my last radiation treatment at 7:45 am and flew to Disney World at 10:50 am that same day. Although I will admit to asking for a doctor's note that indicated I couldn't stand in the sun for very long...alleviated some of the wait for the rides. I must tell you I have no guilt about that at all!! What the hell, I had been through 7 weeks of radiation treatment and a lumpectomy, dammit! I deserved a break!! But I had no fatigue (thank God) and in fact I started a rigorous exercise program of walking or biking 10 miles three times a week when I started the treatments. I never really exercised before this. My doctor told me it would help alleviate some of that "cancerhead" and just general depression that I had following my diagnosis. And she was right. I have heard that several large breasted and heavy women tend to have horrible experiences with skin reactions but my oncologist told me only 10% of all patients receiving radiation for breast cancer experience side effects. Regardless, if someone does have side effects she told me they can be quite debilitating...but for anyone reading this who may be nervous (and you must be crazy if you aren't nervous!!) just know that many women get through this okay.I am responding to your message that is almost two years old.  I think I have been diagnosed with something either identical or similar to your cancer.  I m 65 years old and my breast are still large (38DD).  I had a milk duct removed from the left breast 4 years ago, no bad cells.  I had a milk duct removed a few days ago from my right breast and was diagnosed with Stage 0 "in-situ" milk duct carcinoma.  The doctor has suggested a lumpectomy and 5-6 weeks of radiation.  No lymph nodes will be removed and no chemo will be done.  I was told that the radiation treatment takes about 10 minutes and the worst sympton would be fatigue and a bad sunburn appearance that may peel since I have fair sensitive skin.Are you familiar with anti-fungal treatments and do you beleive that cancer is a fungus?  I do.  I am willing to following an anti-fungal diet the rest of my life but I don't think I should just assume that I can afford to ignore the fact that I may be currently growing a deadly fungus in my milk ducts that may not stay contained until all the fungus is dead with just diet alone.Any opinions?  Thanks for your input.Have you have any recurrence of your problem?  If so what are you doing about it? Cajun Sun, 20 Jan 2008 00:00:00 GMT