DCIS questions and confusions, personal stories and issues
Comments
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Infobabe,
I am 65.8 and have been lucky not to have had issues with my female organs so have concerns about one 'cure' causing another 'disease'. Of course I had healthy breasts for 65.8 years too so anything can happen at any given time.
Just saw the Medicare claim for the biopsy......$9700...gee can't wait to see the surgery cost. My secondary insurance has huge deductible and then only pays max of 10% of what Medicare doesn't pay so this should be interesting. My hubby's heart surgery took us to the front door of the poor house in 2009 due to the out of pocket ( he is 9 yrs from Medicare) so I guess the door will open this time. Sigh...one more stresser this week.
Surgery 6 days out
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I am here to stay..at least I now have a topic where I feel comfortable to ask any and all questions, share my results and perhaps even talk a little personally thanks to CLC!
Happier camper today
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My statements have been coming in too and they are staggering. Save all of them because you can deduct them on your income tax. Most people don't hit the minimum to do that but with something like we have, we might be able to use them next April.
I had a complete HYS 33 years ago and I don't miss those organs one bit. They can complicate matters later in life and I am glad to not have them.
Actually, I don't have hardly any of my original parts.
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terrikoala...
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I shared my DCIS biopsy path report on another topic page so will not repeat and it indicated that the ER and PR would be in an addendum. I just called the BS office and got those results. I am ER and PR positive. I am kind of surprised since I am almost 66 and very post menopausal and my last estrogen blood est said I had almost zero. So....I guess this means I will be on Tamoxifen and it has its own issues right? I read that Tamoxifen can give me hot flashes like I don't have enough of those all day already. I was on HRT for years to replace the estrogen I was losing but got off due to the side effects and now reducing the estrogen will enhance the menopause symptoms I already have and can cause uterine cancer. OMG.
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Don't worry about that. It is a small percentage and I understand, manageable.
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CLC,
Thanks for ur reply. I had a ultrasound guided biopsy u don't know if that is stero???? -
How they got it doesn't matter. Is it core or needle biopsy? Are there any path reports yet?
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Infobabe ~
It was a needle biopsy. Er/pr +, her2 -, grade 2. That's is all I really know. -
clc
I've noticed you and a lot of other women with DCIS had a lumpectomy first then mastecomy later. My lumpectomy is schedule for Aug 17 as I had a large hemotoma from the biopsy. When I went to the BS he threw mastecomy at me and it kinda threw me because up till then I thought lumpectomy + radi was the course of treament. Now I'm trying to decide the best option for me. I don't really want to have a lumpectomy then have to go back and have a mast later. Also do you know anything about MIB-1, KI-67 on biopsy path. Mine is 20%.
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I had a lumpectomy and re-excision before having to have MX due to involved margins. The lumpectomy was pretty easy as far as surgeries go, so it is worth a try if you want to save your breast. It was a hard decision for me, because the recurrence rate after lumpectomy and rads can still be fairly significant depending on what study you look at (~12-20% if memory serves). However, the overall survival rate is about the same (~99%). The surgeries for lumpectomy and the recovery times were short, and I don't regret having tried those first.
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My BS said the long term pronosis is the same but getting to the long term is the part I'm having trouble with. Of course different site have different info, so some can be confusing. Did your biopsy path results show Grade 3 or was that after lumpectomy? Thanks for reply
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I agree with LAstar. Some women go straight for mastectomy when they hear cancer (DCIS or IDC) others choose to try lumpectomy first. I had a lumpectomy and then two more tries for clear margins after which we decided that I should have a mastectomy because of the extensive disease. I don't regret it, I feel like we tried our best to get the cancer out without mastectomy, but it was not to be. That said, it is a very personal decision and no one can make it for you, you have to decide what is best for you. My understanding is that outcomes with lumpectomy + radiation vs. mastectomy are pretty equal overall. I don't know what percent of lumpectomies require reexcision, I think the data is out there, I just don't remember the numbers. Good luck making your decision, if you have further questions, please ask.
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So, you have had a biopsy. Your hormone status looks good.
What you need is your biopsy pathology report. If you do not have it, call your doctor's office and ask for it. Same with any further reports you have. Are you scheduled for an appointment with your doctor about a lumpectomy or anything else?
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pnmg02, my biopsy indicated that the DCIS was Stage 3. My lumpectomy and MX found both Stage 2 and 3. Mine was too extensive to get with lumpectomy, so ultimately I didn't have a choice. However, I tried and never have to wonder if a lumpectomy would have been enough. An MRI may be helpful to indicate the extent of Grade 3 DCIS but it also may indicate a problem where none exists. The MRI found suspicious spots in my other breast, but nothing was found there after the BMX. No regrets. I feel that, with a 4-year old daughter, I cannot be too aggressive about this disease. However, if the lumpectomy route had worked out, I'd be finished with treatment instead of looking at another surgery for my reconstruction! Pros and cons either way. That little voice deep inside will tell you which path is best for you.
I think that the re-excision rate varies by BS. I felt that my BS was conservative with the amounts he took in the lumpectomy and re-excision, especially when I compared the volume of tissue taken to that cited in other research. He talked a lot about the "cosmetic outcome" and kept telling him "more is more -- get it all." Ask your BS what his/her re-exicison rate is and what proportion of his/her patients have to go on to MX.
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Cookie monster ~
I have heard the results are equal. My concerns are the lymph nodes and also I have 2 kids a single mom, and I don't want to have to have multiple sx. -
pnmg02~
I completely agree I dont think i am up for more than one surgery. I feel like get it out and move on. But at the same time I don't want to assume anything. Ughhhh -
Hey everyone! So much going on! I only have time for a quick post now...so here goes some quick answers.
I had a lumpectomy (really an excision) in 2010 for ADH. When I got the dcis dx, I went right to mastectomy because I did not want to do radiation. As others have said, this is very very personal.
As to tamoxifen, it is important to look into it carefully. The actual amount it reduces risk of a new bc depends on how much risk you have personally. If you have pure dcis, tamoxifen will be solely about reducing risk of a new bc (not deal with the current cancer, which should be entirely removed surgically). If your risk is relatively low, then the extent that it cuts that risk will also be low. Not everyone takes tamoxifen. I chose to decline. My bs did not agree with my decision, but my mo was okay with it after asking me to spend an additional month considering it. If you are in doubt about tamoxifen for you, discuss it with your mo and ask for actual numbers that it reduces your risk. I don't remember my actual numbers, to be honest, because, for me the decision was pretty straight forward. I would rather have another mastectomy than take tamoxifen, but I am very very averse to systemic treatments...that is just me and I am extreme.
I wish I had time to read through all of the posts now, but I will get back here tomorrow night...
Wishing everyone the best...
Claire
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Dakota, hopefully your lymph nodes are clear.... but if they are not, then the type of surgery that you have on your breast, whether a lumpectomy or a mastectomy, doesn't matter. Your lymph nodes are in the underarm area, beyond the breast. So if you have lymph node involvement, it's not the type of surgery that you have on your breast that matters, it's other treatments, such as chemo, that come into play.
There is a risk with a lumpectomy that you may need more than one surgery, if the surgical margins aren't adequate. I believe that this happens in about 20% of cases. With a mastectomy, if you choose to have reconstruction, then you are almost certain to require at least two surgeries. Complete reconstruction usually can't be done in one surgery alone and even after a two-surgery reconstruction process, additional revision surgery is required in about 30% - 40% of cases. On the other hand, if you decide to pass on having reconstruction, going with a mastectomy is likely to mean just the one surgery. These are all things that you have to consider as you make your decisions.
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Hi All,
I was wondering how many of you with a bilateral mastectomy following a noninvasive DCIS diagnosis are taking tamoxifen.
I was orignally taking tamoxifen when I had the first breast removed in order to 'protect' the healthy breast. I then had a suspicious papilloma removed and the tissues around the papilloma ( which was benign) location were DCIS. The timing sucked, but they did not discover it previous biopsies/mri. Thankfully it was discovered. I ended up have the second breast removed. At that point I felt it was difficult to detect and how more chances would I get to find something early.
Anyway, I was told at that time I would no longer need the tamoxifen because the breast tissues were gone.I have recently read that some women are taking it tamoxifen still. I was concerned [I am 42] it was really doing a number on me in terms of SE. Should I still be taking it as well? What are your thoughts?
BTW, Thankfully I had my expanders replaced almost two weeks ago and that was a blessing. Not sure I would opt for the immediate reconstruction again, but its done now. Happy to be able to sleep on my side! Hooray.
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Bessie~
Thanks so much. So if I understand it correctly the lymphnode involvement only determines treatment ??? so its of no consequence mx or lump at the time. But with mastectomy there might not be chemo or radiation if no lymp involvement ??? -
Dakota, lymph node involvement determines treatment and possibly surgery - but not the surgery to your breast. If you have positive nodes, it might be recommended that you have additional surgery to remove more nodes, what's called an axillary node dissection. This is a bit controversial these days; axillary node dissections used to always be done when the nodes were found to be positive, but a year or two ago some research came out that said that an axillary node dissection might not be necessary if the patient is going to have chemo anyway.
Having a MX instead of a lumpectomy will not affect whether or not you need chemo. If chemo is recommended - and it could be recommended either because of the pathology of the tumor or because of nodal involvement - then it will be recommended whether you have MX or a lumpectomy. And if chemo is not thought to be necessary, then it won't be required whether you have a MX or a lumpectomy.
As for radiation, usually radiation is recommended after a lumpectomy although a small number of women who have very favorable pathology and good margins choose to pass on radiation, even after having just a lumpectomy. On the other hand, if you have close margins after a mastectomy (for example if your cancer was right up against the chest wall) or if there is nodal involvement (usually 2 - 3 nodes or more), then radiation might be recommended even after a mastectomy.
greenpeace,Tamoxifen usually is not recommended after a BMX for DCIS (or any other pre-invasive condition or pre-cancerous condition). This is because the risk of a recurrence or new BC after a bilateral MX for DCIS usually is only about 1% - 2% (assuming adequate surgical margins). Tamoxifen can cut this risk by about 45% - but with such a low risk to being with, the benefit from Tamoxifen is at most 1% (a 50% reduction of a 2% risk). Overall Tamoxifen is a very safe drug but like all drugs it comes with the risk of side effects. Most of the side effects from Tamoxifen affect quality of life and do not present serious health risks however there are a number of small but very serious possible health-related side effects. Depending on one's age and overall health, the risk of serious side effects from Tamoxifen can range from about 1% to about 3%.
What this means is that the risk of serious side effects from Tamoxifen, even though very low, can range fom 1% - 3%, whereas the benefit from Tamoxifen in terms of the reduction in BC risk is only about 1%, for those who've had a BMX for DCIS. So by taking Tamoxifen you may actually be putting yourself at a greater overall health risk. This is why standard of care guidelines do not recommend Tamox. for those who've had a BMX for DCIS and that's why you were told that you no longer need to be taking Tamoxifen.
Obviously for those who have a lumpectomy and have a greater recurrence and/or new BC risk, or for those who have invasive cancer and have a risk of mets, the benefit from Tamoxifen in terms of risk reduction will be much greater. For example, if recurrence risk after a lumpectomy is 10%, Tamox. can cut this risk to 5.5%. So in this case the benefit from Tamoxifen will be greater than the risks of taking Tamoxifen. This is why Tamoxifen is recommended to women who have lumpectomies and those who have invasive cancer (even if they'd had a BMX). In these cases, the benefit vs. risk equation is completely different than it is for someone who's had a BMX for DCIS.
Hope that all makes sense!
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Bessie, I love your posts...
My pathology after double mastectomy with immediate reconstruction (diep) said my sentinol lymph node was negative and I had a micro invasion. I think of .7mm. I will speak to my dr after he is off vacation. But my breast nurse thought it was too small to measure hormonal receptors? She said no chemo, no radiation and it sounds as if no hormonal recommendations, but does this mean now I would be considered having a stage 1 not dcis? I have recently heard of a couple of my fathers aunts who may have had breast cancer and my mothers sister died 20 years ago at age 34 of what they thought was breast cancer. Was quite aggressive and quick. So I'm wondering if they would let me test for the gene? Are dcis patients ever given the test? But maybe now I was considered stage 1. Thought u might have some insight before I speak to my dr mid August. Starting physio next week at week six of recovery. Feeling pretty normal these days and trying to truly relax and accept the great report
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Lavendarlady - I was originally diagnosed with DCIS and they did do genetic testing on me before we knew it was anything but DCIS.
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Lavendarlady-
If my sister is BRCA -, do I need to be tested and see genetics?? -
Yes. My friend is BRCA-, but her sister and mother are BRCA+.
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LAstar-
Thanks I will then
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Hi, I'm a mexican girl (born, raised and still living in León, Guanajuato) who last December had a bleed through the right nipple, 3 bleeds later and 2 negative pathologies for cancer (1 bleed dissapeared before I coud get to my doctor's office) Been on tamoxifen since then, hate it by the way. 2 Oncologist and 2 iffy diagnoses and a lot of pain -_- later I'm heading to St Luke's Episcopal Hospital in less than a month to get a third opinion. I have no insurance and well the tests I can afford, but can anyone please tell me if someone knows how much a bilateral prophylactic mastectomy costs??? I tried to get an estimate from the hospital but they just won't say a thing. Thank you
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Sorry, I'm posting this here because my father's mother developed Ductal Carcinoma from ductal papilloma which is the thing I was diagnosed with. Thank you
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Hi All
Just wanted to contribute to this topic as I have DCIS Grade 2/3. Am currently on rads #29 of 34 treatments as well as on tamoxifen since I am premenopausal. I was told by my MO that he treats for 2 yrs with tamoxifen then 3 yrs of AIs to get the benefits of both. AIs have a greater benefit for prevention of new cancers in the same or other breast than tamoxifen, although Tam is the gold standard and the only drug usually used in premenopausal women. So far, I have had minimal side effects from the Tam (the expected hot flashes, but not many) and am thankful to be on it.
I am a scientist who has been diagnosed with breast cancer and so I have read much of the research around the use of Tam or AIs. I actually have experience with breast cancer trials (ironic, isn't it?) Much of the use of the AIs in DCIS is "off label" but that is because it costs drug companies millions of dollars to do new trials to 'prove' that a drug works for the new indication, so they do not always do it; that does not mean that the drug is not good for that purpose. Much of medical research is moved forward by some doctors trying new things and finding out what works and what does not. They then publish the results (hopefully both the good and the bad). In this case, we know that AIs do significantly reduce new tumors in women with invasive BC given AIs after surgery. It is theorized that the use of AIs in DCIS, similar to Tam, will reduce not only new DCIS but also invasive BC in both breasts. Almost half of all recurrences in DCIS are invasive BC. Trials are underway but will take 5-10 yrs to show the full extent of the benefits/risks of using the AIs. From what I know, I will be switching to an AI in about 2 yrs as I do want to get the max benefit of drug prevention of a new cancer.
Nothing, unfortunately, is certain in medicine or in life. I have found it to be very hard to make decisions since January when I was diagnosed. I elected lumpectomy even though some thought I should do a double mx. Yes, I did need a re-excision due to DCIS on the margin. Before my lumpectomy, I did do the BRCA test and that, even with the implications, was also easy to do for me. Luckily, all was negative. To me, starting the Tam was the easiest part of the decision-making because of the solid record behind it. The rads decision was the other easy decision even though it has not been easy to do (the worst part for me is being unable to take a vacation because of the schedule); but 50% reduction in new DCIS or IBC was the sell for me. I will keep my eye on the research as I move forward, but I now have a lot of confidence in my medical team and will count on them to guide me.
If you do not know something, ask your doctors until you get the answers you need to make decisions. There are also great books out there to read like Susan Love's breast book. I go to all my appointments with questions in a notebook, numbered by which are the most important to get answered first, so if the appointment is not long enough, I get the most important ones answered. I then follow-up with questions to the nurse or the doctor later by email or phone.
Sorry this is so long; I just hope it is helpful. I know I have gained a lot of help from the members of BC.org dealing with my diagnosis as well as a lot of helpful information.
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