Confused
I am new to the group and newly diagnosed with a pre-cancerous biopsy. I had a mammogram in January that was suspicious so I went for another in April along with an ultrasound and MRI. Those all showed micro calcifications so I had a biopsy last week. I just got the call Friday that they are precancerous and I'll need surgery. I meet with them Tuesday to discuss my options. I have spent lots of time researching and trying to figure out what they are going to tell me and how quickly everything will happen. To make things difficult I have saline implants and I have 3 vacations planned and paid for in July, August and October. I'm unsure whether they will just want to complete a lumpectomy and no radiation or something more. Anyone with any similar experience they can share?
Comments
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cbowle, it depends on what your precancerous diagnosis is. What were the pathology results
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MelissaDallas, I don't know anything more than that it is precancerous and will require surgery. I assumed at the time it meant a lumpectomy but now I'm not sure. My initial appointment was to be with his PA on Tuesday but they changed it to the Breast Doctor due to the results from the pathology report. The waiting to find out something is excruciating.
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I know, I'm sorry you find yourself here.
If by "precancerous" they are referring to atypical ductal hyperplasia (ADH), atypical lobular hyperplasia (ALH) or lobular carcinoma in situ (LCIS-and just considered a marker for increased risk and not considered cancer) they are talking about doing an excisional biopsy. In about 20% of cases where the above conditions are found on needle biopsy there is ductal carcinoma in situ or invasive cancer found in that area, so they do a surgical biopsy to make sure there is not.
If by "precancerous" they are talking about a finding of ductal carcinoma in situ (DCIS) then they will be doing a lumpectomy (same as excisional biopsy, but with the added goal of achieving clear margins) or mastectomy in some cases or if you so choose. There may be further treatment which might include radiation therapy and antihormonal therapy. In about 20% of cases of DCIS surgery can reveal invasive cancer, in which case there are a lot of variables as to what the treatment would be.
This is a big simplification, but that is rough idea as to what might happen next. There may be additional testing steps involved in the interim.
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MelissaDallas, that helps a lot! My assumption was that it must at least be DCIS and would require a lumpectomy or even mastectomy. I guess it's possible that we're just looking at another surgical biopsy based on the results from the stereotactic biopsy results? At least that's what I'm gathering from your post. I am not as fearful of a negative outcome right now but more of what my options will be. I'm guessing I have caught this early enough so that I should have a good prognosis regardless of my next steps. I'm so thankful I found this site and for all your insight. Thank you...
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I'm glad it helped. It is a shame they have chosen to be so cryptic in their communication. It just encourages you to go to "worst case" doesn't it? It sounds like you will be fine, regardless. I hope you know more soon
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Hi Cbowle, If I may chime in...If i were you with the knowledge that I have now, I would go ahead and take my vacations. I would just closely check on the cells. Get an ultra/sound, mammogram every six months. It may never become cancer. At least I would take as much time as possible to think about treatment and what I wanted to do. Some doctors want to rush you into surgery when it is not necessary. Having a mastectomy does not eliminate cancer.It only removes the cells from that site. Mastectomy surgery will change your life. It is painful and has a very long recovery. If you would feel better having one, I would say enjoy your summer first. Just my 2 cents...Good luck!
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Thank you Fe Princess! I went to the doctor today and they want to complete a Lumpectomy and radiation. I gave him my vacation schedule and he thought we might be able to squeeze everything in between vacation dates. He also said that I might be a candidate for the high dose radiation that can be shortened to 3 or 4 weeks but we would need to wait until my pathology reports come back from the lumpectomy to be certain. I was diagnoised with low to intermediate DCIS. I was shocked when he said I could do radiation but he said that technology was so advanced now that they don't have to do the entire breast and they would be able to do only the area of concern. Lumpectomy is scheduled for Monday, May 9th. I am feeling a lot better today and hoping I am actually able to sleep tonight. Thanks for all the support. -
As long as you are happy with your decisions, remember it is your body! You should update and join some other threads. There is so much love and support here. Keep us posted/updated too.
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Thank you Fe_Princess. Right now I am happy with the treatment he is recommending. Hoping everything will continue down the path they are preparing me for. I was relieved to hear that they weren't going to rush into a Mastectomy and would prefer that the area of concern be removed and analyzed as quickly as possible. And I know the pathology reports from the Lumpectomy could always change the course for me. I don't know how quickly radiation can be preformed but I really don't want to cancel vacations that have already been planned and paid for if I can delay radiation without causing issues for myself. If they can start radiation 3 weeks after surgery then I would finish my 6 weeks just before we leave. He didn't really say how soon radiation would start after surgery so I guess I have to wait yet again. I will definitely join some of the other threads as I become more comfortable with the site. Thank you for be so helpful. The love and support here is much appreciated.
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Hello. I am new here also but wanted to share some information. I was diagnosed with DCIS on 02/29/16 and finally had a lumpectomy on 04/28/16 so 10 days ago. I feel good now. My pain was minimal and recovery overall was easy. My cancer is on the left side so the higher radiation isn't possible. I don't know how long your vacations are but my radiation oncologist said taking a week off in the middle of radiation treatments isn't a problem and is sometimes helpful to give your skin a break. Starting radiation 3 weeks after surgery will depend on your swelling. Although I feel good 10 days post surgery I still have swelling so getting measured for radiation has to wait until the swelling is gone. Good luck! I hope it all works out for you
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Lorice, mine is also on the left side so I'm not sure what the differences might be. I have my lumpectomy tomorrow and I am looking toward to getting this chapter over and moving on to the next. My vacation on July 9th is Saturday to Saturday and 2 1/2 weeks later will be Thursday returning on Monday evening. Right now I feel really good and positive. I haven't had any meltdowns and really only got teary eyed twice so far. Fe Princess made a good point when she told me to take time and that it is my body to make decisions about. I certainly don't want to not follow the advice of doctors but if everything comes back from my lumpectomy as they expect (low to intermediate DCIS) I honestly feel taking my vacations will be safe. Vacations keep me sane and are something I work so hard for that I want this to work out. How did your results come back from your lumpectomy a few days ago?
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Hi Cbolwe, I hope all goes well tomorrow. It is a tough thing to go through. My thoughts will be with you.
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Cbowle I hope your surgery went well and you are feeling okay. My worst day was 48 hours post surgery but it was tolerable and I didn't need pain meds. My pathology results were good/bad. My lymph nodes were negative but my margins were positive so I am having a mastectomy on 5/25. Good luck to you and hopefully your results will be better.
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Fe Princess & Lorice, surgery went well! I was extremely nauseated after surgery and spent the first couple of hours afterward vomiting. I've never had that kind of reaction after surgery so maybe it was all the Sprite i drank that caused it. I think the vomiting caused me to have a terrible headache as well. I woke this morning and feel amazing! The headache has eased of but athere is a tinge left. Very little pain from the lumpectomy but my pain tolerance is pretty good so I hoped it would be manageable. Looking forward to hearing results by Friday. Hoping for the best but always expecting worse. I'm so sorry to hear you're require more drastic surgery. How are you coping? Was it something you were preparing to hear and deal with? My thoughts are with you...
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Glad you are feeling good. I was thinking of going this route from the get go but decided I would try for a lumpectomy first so I am doing okay. Thank you and good luck with your results. Keep us posted.
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Hi Cbowle, anesthesia is unpredictable. I am glad it is over and hope the results are good. Do you know your HER2 yet? I went with the mastectomy because I did not want to have any radiation or chemotherapy. I was stage 2 though. Just take it one day at a time. That was all I could do. So many changes to my body and if my mind does not stay caught up, I can get very depressed. Please let us know the results.
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Lorice & Fe Princess, they called me with good news! DCIS (stage 0) with clear margins so they think they got it all. I don't really know anything more than that right now but I'll take it! She said the doctor would go over my results more in depth at my post op visit Tuesday. I don't know enough about breast cancer to know all the ins and outs but apparently this is a the very earliest stage and makes me feel a bit more at ease when trying to wrap my head around all this. I guess he'll let me know specifics about radiation Tuesday as well. Fe Princess, I'm sorry about the depression. I hope you also have a really good support group at home. I think these groups help A LOT but hope you have some very supportive friends and family who can give you that warm hug when needed. I have only been dealing with the reality of this for a little more than a week so I'm sure the rough spots are still to come. Lorice, what have you decided regarding reconstruction after your mastectomy
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Fe Princess, by the way, what exactly is the HER2 going to tell me? I mean what is the significance of it? I'm clueless
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http://www.breastcancer.org/symptoms/diagnosis/her...
You can read about here. Maybe it does not play into your diagnosis. I am doing well. I have loads of support but I have had so many operations in the last year. I am so different than before my diagnosis. Cancer changes us but I am in acceptance. I am glad that your margins were clear. Why are you doing radiation if the margins were clear, just curious...
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From what the surgeon told me before the lumpectomy they do radiation to be certain they kill any remaining cells since I am still young. He said if I were 65 or 70 he might not do radiation but with my age they complete radiation therapy. I'll know more specific information Tuesday I suppose. Yes, even one surgery is exhausting. I can't imagine the mental toll it has taken on you. Physically I'm sure our bodies do well but mentally it must be so tiringfor you. Are you done with your surgeries for a while? Is your reconstruction complete?
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Yes, it's complete for now. I may have minor reparations that have to be done. I have pre-cancer cells in my right breast but I am just having them watched. I asked about rads because my tumor was 3cm but I didn't have rads. In fact chemo/radiation scares the crap out of me. It is really such a huge, life changing experience isn't it. Will you be okay in time for your vacations
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It is life changing. I am someone who never gets sick, never misses work, eats healthy, works out regularly and is not obese so at times I wonder what did I do wrong? I guess we all feel that though. I'm not really afraid of radiation so I'm ok with his recommendation of doing it. I don't know at this point whether they will tell me it's possible to squeeze it all in before July 9th or not. But I am following your advice and if they can't get it in before I leave then it will wait until I return from the 2nd vacation in August. I'm not making light of the situation at all but with my stage I feel comfortable saying if you can't do it in my timeframe needed then let's hold off for a few weeks so I can make sure I complete radiation uninterrupted. The nurse I spoke to thought the concentrated, shorter 3 week program was also a possibility but I won't know until I speak to the surgeon on Tuesday. And then who knows what the radiologist will say. Are you continuing with mammograms every 6 months and biopsies as needed? When was your right suspicious activity detected? A huge fear for me down the road.
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Hi, I get ultra-sounds every three months. I just had reconstruction to remove the implant so it'll be awhile. I was at the height of fitness when I got diagnosed. It's a hormone thing. Did the doctor talk to you about how you'd feel after radiation
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My breast surgeon told me with breast radiation it is usually tolerated well. From everything I've read I know it can suck a lot of energy of out of you and may cause fatigue. I know I will need to keep lots of protein and fruits and veggies in me but I try to do that anyway. He told me he doesn't want to do the entire breast with radiation (which was my concern since I have breast implants) but only the area that was removed. I'm anxious to have more specific information next week. I'm not sure how much information he will give me since I will be doing the radiation therapy closer to home (20 miles versus 60 miles).
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You should have a diagnosis report since you had a lumpectomy. You can ask, demand, it from them. It will have all the results from the cells. It took me ages to get my report and it is so frustrating but I had an HMO so it is like wandering in a quagmire.
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Yes, he gave me a copy of the report from the biopsy so I'm certain he will with the lumpectomy as well. I'm just not sure whether he has already contacted my radiologist yet to lay out my plan. That might be what we discuss Tuesday, I'm not sure what the entire visit will consist of yet. My breast surgeon has been great so far and hasn't seemed to withhold information or push my concerns or questions to the side. The only headache is that he is 60 miles away but the drive is worth it since this is his specialty.
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Cbowle, so glad you got good news! I have an appointment on Wednesday with a plastic surgeon to discuss recontstruction options. Right now, I am leaning toward waiting. I have read that with immediate recon recovery is longer with increased risk of infection.
How have you been feeling? Have you had much swelling? Did you have any lymph nodes removed? I am surprised I still have some swelling. Again, so glad you got good news
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Lorice, I have very little swelling, if any. I seem to be healing really well and have been feel quite good. I still have bruising and the cut isn't completely healed but looks pretty darn good. They didn't remove any lymph nodes so that may be helpful with my healing as well. I'm trying to make sure I eat plenty of protein because I read that helps with healing too. Yes, I'm not sure if I would want immediate recon after a mastectomy either. I mean it would be nice to not have the shock of being completely flat but if there are more risks for infection and complications then waiting might be best. I'm interested to hear what your plastic surgeon says Wednesday and recommends for you. Please make sure you update when you have a chance. Are you doing mastectomy/reconstron both breasts or only the left?
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I am doing a left unilateral mastectomy and, for now, I am not doing reconstruction. I was having some serious swelling from my lumpectomy so I also saw my Surgeon. She drew off 60 cc of fluid from my lumpectomy site and because ithe site was also warm and red put me on antibiotics. Surprisingly, having a large needle poked in my breast and moved around to draw off fluid didn't hurt at all. It did make my husband squirm! How did your appointment go on Tuesday?
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Oh wow! It's amazing what might have seemed harsh to us before now seems quite doable once you start going through this process. Did they think that you might have just set up some type of infection or something? That sounds like A LOT of fluid!!! Will you still be able to have your surgery next week with all this going on? Everything went really well Tuesday. He said I was healing up nicely and was really disappointed that the cut was not a perfectly straight line because he is such a perfectionist. I told him that I honestly did not care about the fact that it had a little V in the cut instead of a straight line. I care more about whether or not everything was removed and thrilled for clear margins! I made my consultation with the Oncologist/Radiologist for June 2nd so they can start making my plan for radiation. They said I need to wait 4 to 6 weeks to be certain I am completely healed before we can actually start radiation. I noticed on my pathology report that it said my ER > 90% so I'm guessing he will also put me on Tamoxifen? I can't really complain though because I feel so fortunate that I caught everything so early.
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