louishenry

Hi Barry. I'm concerned that your Docs under- reacted to your DX originally. I believe that grade 3 is always treated with rads ( or mast). While we do not want to over treat DCIS, under treating it is very dangerous, especially comedo cells.  Luckily, it still was DCIS this time and nothing more serious! The semantics between docs amd the definition of DCIS may never change. Susan Love calls it a pre-cancer. So did my docs at Northwestern. However, they treated my DX very seriously. I had a small amount of low-grade cells, but they still said that there was about a 50% chance that my cells would have changed. Grade 3 would have been higher. Even though it was small, they still recommended tamoxifen, MRI every year, digital mammo/ us also. ( for my pathology, rads were not recommended. Benefit was very small.) They did not lead me to belive that I was at death's door, but the docs said that I needed to remove the cells before they became dangerous. They said that they did not know when that would be. Tomorrow, or 5 years or never.  That's the problem with DCIS. It's not too much to worry about in terms of a threat today. But no one knows what it may lead to. I think I begged for rads in the beginning. That's how afraid I was!  I'm just grateful that I'm being watched so carefully.  I bet this time, all your bad cells will be demolished off with rads. Good luck.

I've never read that everyone has necrosis. I got out my old path report and read the details. One line said " no evidence of necrosis". My cells were low grade, micropappilary and cribriform.

I am also having a laparoscopic hyster done on the 26th. ( still thinking about the ovaries). They told me about4-6 days of rest before I'm in overdrive again. Nada

My doctors say that Effexor, Lexapro, and Celexa do not interfere, according to David Flockharts' original study. I was on Lexapro for awhile. My se's  of tamox were the same on and off the Lexapro.    Nada

Hi. They both feel that "since they are already down there..." They feel that since I am on tamoxifen and having some se's, my instant menopausal se's may not be all that stronger. I'm not sure if I believe that comment. Sun,  Did you keep your cervix?  Thanks, Nada

Hi Lizinal. Sorry to hear of your DX. I was reading your post. I always thought necrosis was associated with high grade lesions. My surgeon did not recommend rads as well; however I wanted the opinion of the onc and rad onc. Radiation is not the protocal for all DCIS, but it often is for lesions that  are high grade and have comedic cells or necrosis. . A candidate for no rads would be a very small amount of low grade (under 5mm) of DCIS that had margins at least a centimeter in all directions. Many of us have had our cells removed in biopsy, so those numbers are possible. I would get another opinion for sure. Good luck.

Hi Thank you for your reply. I will stay on tamox as AI's have not been approved for DCIS yet.  Anyone else??

Well, Sue's story is pretty awful. Sorry to hear than this has plagued you for years. I guess we all have to realize that it is possible that her story could happen to any of us. Obviously, it is unlikely, but possible. Living with uncertainty is difficult for all people, but especially people like us who have been dx with bc. I had 4 mm of calcs found in May 2007. Biopsy removed 2mm of ADH and 2mm of DCIS. Lumpectomy had no residual disease, so large margins. Many opinions of no rads, but I am on tamox. My dx was not presented to me as "you have cancer". The surgeon said that the cells looked similar to cancer cells, but do not behave like cancer cells. He also said that they needed to come out to prevent a future disease. For a minute, I thought "double mastecomy". I realized that was emotion talking, and not reality. I have decided to live with a reasonable amount of risk. Hearing stories like Sue's do not help, but  what does a girl do?  Move on, hope that stats stay true . Sue, I wish the best for you. Nada

Ace, I was reading some of your other posts. I am sorry that you have had such a tough time. My sisters husband was also dx with narcolepsy. It's been difficult. Frankly, your DCIS dx was pretty favorable, as far as dx's go. There is a strong likelihood that you will never be faced with DCIS or invasive again. But depression can be debilitating. I have it in my family. I certainly am not a doc, but for about a 2% benefit, tamox may not be worth getting off wellbutrin. Talk to your doc about Lexapro or maybe, just don't do the tamox. UGH! I hate this! Nada

Hi Red. So sorry that you are going through this anxiety. I did too. What pushed me into tamox was that my docs did not recommend rads. Even with no rads, 2 out 3 oncs said I could forgo tamox. (2mm adh, 2mm dcis, removed in biopsy). I was not comfortable with just monitering. Ok, so I tried it. It has been just fine!!! Over a year now. However, my docs did say that my fibroid could grow and it did. It was about 12-14 week size for years and then jumped to 18 week size within a year. I am having a laporoscopic hyster on Nov 26. I'm not thrilled with that, but frankly I have a huge family history of fibroids. They really needed to come out anyway. I'm not suggesting tamox is a wonder drug, I HATE having to be on it. Sometimes I can't believe how 2mm of crap has changed my life. MRI's. mammos, us, tamox, hyster, fears of something much worse for the future, blah, blah, blah. My suggestion is to first see a pych. I have struggled with panic attacks since my 20's (now 46). The pych did alot of research on the CYP2D6 info. I took the test and found that I am a extensive metabolizer. I did get off paxil asap. Effexor wasn't great for my panic attacks. She e-mailed David Flockhart at Indiana U . He started the whole study. He said at that point that Lexapro did not interfere with the metabolixing of tamox. Effexor was better, but lexapro was fine. I took that drug for six months then got off. Just for the record, my se's remained the same. Night sweats, very irregular, very light periods every couple of months.  Five lb weight loss. Very good blood work numbers, LDL was great. I don't post that much anymore, but when I see someone struggling with whether or not to take tamox, I write to say at least try it. Most women find their se's VERY manageable. Good luck, Nada