get enough treatment without overtreatment
Comments
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Hi Big:
Sorry if I am say something obvious to you, but re: "That is a great point if MRI is not seeing the disease then how could I be safe to just be monitored?"
It seems like this question would apply equally to an approach consisting of endocrine therapy plus surveillance, in case the endocrine therapy is not effective (which is possible, even if core biopsy showed the presence of some ER+ PR+ DCIS).
Please inquire about it with your team.
BarredOwl
P.S., Here is part of my earlier post regarding monitoring (i.e., surveillance) with sample questions which go to this matter:
"Endocrine risk reduction therapy for DCIS (without surgery) requires monitoring. The ability to effectively monitor disease via imaging (and possibly additional biopsy) is very important. In at least one trial, MRI is being used. Thus, additional questions may include:
(5) If I were to delay surgery [e.g., while receiving endocrine therapy], how will disease be monitored (what imaging techniques are used, which are preferred, and at what frequency)?
(6) What are the limitations of such imaging methods in general in detecting new or worsening disease?
(7) Are there any current imaging or pathology findings that may raise concerns about the potential efficacy of monitoring in my particular case? (e.g., heterogeneously or extremely dense breasts by mammography? disease that is occult on MRI?)
In this regard, please consider the efficacy of monitoring in your case, in that you have been diagnosed in the first instance with what appears to be extensive DCIS.
These are just example questions, and there may be other important questions that I have not thought of."
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Thanks for the list of questions etc
Dr Esserman has offered to call Dr Anderson!
From what is being discussed this in this thread,,, I think most likely I will be advised by both of them it is not worth the risk in my particular case.
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weighing in. Everyone seems to be concerned with the large area of DCIS in the right breast but all are ignoring the lcis in the left. Being a lc and lcis girl myself, this is the one that concerns me. Lcis is a sneaky sucker, many times not showing on mammograms or other tests. I had a total of 6 tumors only three showed up...3 lcis, 3 invasive. The largest one, invasive DID NOT show up until the path report post surgery.
Lots of people lump these two cancers together and assume treatment should be the same. What most idc peeps don't realize is that Ilc can and does metastasize, anywhere it pleases. Idc will move to bone, liver, lungs, brain. Ilc...anywhere it wants, many times undetected. Hence, this little guy should not be ignore.
I was small breasted too. But I found an amazing plastic surgeon. Tissue expanders at the same time as my bmx. Silicone implants, 30 year guarantee. If it break, the silicone remains in place of the breast cavity. In fact, my plastic surgeon would only replace a burst implant if the breast looks wonky....as many times you can't tell. And this guy is very conservative and will err on the side of caution.
I think it is the grade, and the size, that is driving the mx decision, as this is agressive. I would get a second opinion on the plastic surgery. Get a recommendation from your oncologist, as technically, the oncologist is the one that drives the bus. The breast surgeon may be your first treatment stop, but the oncologist really calls the shots. Your team should be talking to each other. If not, I would get a new team. I am two years out, and my guys still chat and forward test results and chat when necessary.
Good luck!
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LCIS isn't considered a true cancer until it becomes invasive. I lived with it for years undetected. The problem is when it changes to ILC, then you have a difficult to detect problem.
Since I feel I received the best cosmetic outcome with my direct-to-implant BMX, I lean towards that choice with bi-lateral cancer. It reduces the stress having the girls gone. Make sure you don't need rads, as it affects reconstruction. Seems like BMX's may be easier to match breasts at the same time, if you know you'll be facing it eventually. Just my opinion, however I didn't have many other choices
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Women with LCIS are actually more likely to develop DCIS or IDC than ILC. It is not necessarily a linear progression that LCIS turns into invasive lobular cancer. It does not behave like a lobular equivalent of DCIS. It is also pretty much a given that if you have LCIS that it is probably scattered throughout both breasts
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The surgeon isn't ignoring the LCIS.. both surgeons I went to recommended an excisional biopsy of the left breast. Both surgeons felt a double mx was an option but it was mentioned along the lines of if some people do one they want to do both.. it was not brought up "well there could be cancer in the other breast too. But of course the biopsy is to see if there is cancer of course.
I was very torn on the decision of reconstruction. It would be another thing that could go wrong. Means more surgery down the road etc. If I did the tissue expansion I was told the tissue can only be used once. So if they did it then there was bad news on the LCIS breast, they would have to harvest from a different site that the first one. (Did not discuss if I had enough tissue in other areas.) Also I was concerned I would have future problems in the area they harvested the tissue from. If I did implants would that cause me to have issues with fibromyalgia, would it leak get hard etc.
If I was going to do both, then I might reconsider doing reconstruction or not.. If I change the plan now then it would probably take them longer to set it up. They have to match the schedule with the PS. I had the mammogram where stuff was seen in September. From what I have read they don't think someone should wait more than 90 days from the date of diagnosis. (I felt this was not explained very well. They said not to wait a long time for diagnosis but I thought the surgeon meant from the date he talked to me not the date of diagnosis.. but I bet he meant that.)0 -
Actually the above is not correct.. the 2nd surgeon said he was not a fan of removing one just because you remove the other.
I wish I had posted her before I had the dr appts.
Of course tissue expansion could also affect the fibromyalgia.. removing tissue from one area and putting it in another.
I was told at physical therapy from a car accident that my ribs are out of place. I told them when an x ray was done, it showed that my spine was twisted.. not like in scoliosis but the other direction. She even had me twist my back when she did an xray so they could properly see my spine.When I told this to pt they said this was because my ribs were out. When my ribs were fixed that would fix the spine rotation.Anyway I am saying all this to show why reconstruction might be a bad idea for me.
Then again I am afraid of how I will react seeing my breast is gone. I have read a study that it affects some women badly.. can't look in a mirror, think they are not a woman anymore etc. Dr Anderson said the fact that I can voice that question shows I am not one of those people0 -
Hi big4:
If you are interested in learning more about non-reconstruction and why others chose it, this website created by Erica (a member of breastcancer.org) is an excellent resource:
BarredOwl0 -
thanks I will check it out
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I think its really important to note that Dr. Esserman does not have enough long term figures. She herself is very comfortable with her position in this but please don't make life and death decisions with such limited information. She may be completely correct but time down the road will really tell.
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yes that is my concern too... that this is still at the theory stage. It might not be the answer but might help them get to the answer.
I am pretty sure my surgeon will just say what people on this board are saying.. too risky at this time.. unless there are studies that have been done that we haven't heard of before
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Here is my latest response from Dr Esserman. She says it is worth a try. From what I know of the studies it doesn't seem to be worth it risk/benefit wise.
I emailed with Ben. He is concerned that the area is large. Worth a try if you want to pursue it- but that may or may not be the right thing for you. Hopefully the discussion will help. I think he is concerned that it won't get you to a breast conservation endpoint. But that is part of the discussion0 -
Going to talk to Dr Anderson about the stuff Dr Esserman said this morning 2-17. Also plenty of other questions
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Dr Anderson said basically what I thought he was going to say... that he wouldn't consider me to be a good candidate for that type of treatment as mentioned by Dr Esserman. I can't quote it exactly, but I knew he meant because I have Grade 3 and the area is large.
Previously in this threat someone mentioned that "occult" meant it was invisible. I should have brought a copy. He said he didn't remember but he thought it was inside of something. Sorry I can't quote him exactly.
If I am remembering right, he said I would have a 10-15% chance of getting cancer in the LCIS breast.
I felt kind of stupid.. like I was asking stuff he had really already told me. He didn't make me feel stupid.. I just didn't know if he knew about the same treatments as Dr Esserman knows about.
I hoped I did not make him feel bad.. he said something like Dr Esserman said I didn't feel my situation was listened to or something. That wasn't it.. it was just that I don't know what he knows vs what she knows. She could have possibly known about a treatment he had never heard of
He said there is a study coming out with 100 women and he would be interested in seeing the results of it.
I asked why did Dr Clark recommend a partial mastectomy when he was recommending a full one? I said I tried to ask her and she said she had not seen me in 2 months.. go see Dr Anderson. I said that she said mastectomy is a reasonable option. He said maybe me bringing it up made her rethink her position. I could see where that would be true... if it is as Dr Anderson described, I don't see how she thought should could save the breast. But I am not a dr.
I will answer people's comments or questions if they want to write here.. but I suppose my future comments should go in the Feb surgery thread
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Dear Big4, I have not written on this site before so am a little nervous but feel compelled to share briefly my DCIS story in hopes it may help you. BarredOwl has made many valid comments. The treatment of DCIS, especially high-grade, is very difficult. I had 3mm of calcification show up on my mammogram in Jan 2014. By May I had had a mastectomy that showed 12.5cm high grade DCIS with two invasive components. Sentinel node mapping was done and showed no axilla involvement. I thought I was clear. Fast forward to Nov 2015 when I had a DIEP reconstruction. My surgeon amazingly found cancer in the IMC (internal mammary chain). This intervention has perhaps saved my life.
High grade DCIS (especially in dense breasts) often evades mammogram detection and even MRI's can give misleading results. Also bear in mind CTs, PETs and MRI's usually require half a cm of cancer to be present in order to detect it. That's already approximately 10 million cells. As for genetics, if there is a genetic component found (I am BRAC1&BRAC2 negative but they are sure I have a mutated gene, just not sure which one yet!) DCIS has an even higher likelihood of turning invasive.
Please remember, if your high grade DCIS is widespread (especially into the medial margin) and contains invasive components (that you may or may not know of), it may drain to the IMC and/or to the axilla. This is a very, very important fact and is an area currently undergoing important research. Also, remember that after a mastectomy of DCIS, some invasive components may be found, but there may also be other small invasions that will not be picked up, due to the "slicing" technique used in the lab.
I am so thankful for all the great medical care I have received over the past two and a half years. High grade DCIS is serious and should always be treated as such. I wish you God's peace as you continue on your journey. His peace fills my heart amidst all the uncertainties of surgeries, treatments and possible recurrences. Love to all breast cancer sisters and thank you for all your encouraging posts.
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Busymother - Just wanted to welcome you to BCO and thank you for a post that I'm sure many will find very helpful. Best wishes for your continued health and well-being, as well as thanks for sharing your experience.
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Actually, LCIS is not just a marker for increased risk. Recent research has demonstrated that it is also a nonobligate precursor tumor. When you look over the long term (10+ Years) the incidence of local recurrence and invaisive cancer is nearly the same as DCIS.
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busymother I assume I would be in the clear from what you said since I had the UMX. There was no invasive cancer, and no node involvement... praise God! I am sure your post will help others. I was shown not to have the main gene mutations people know about but they said I had a variation that Drs do not know what it means at this time.
Momof6littl… I didn't ask my surgeon about what you said (I didn't know about it) He just said that there would be a small risk of getting cancer eventually. He was not in favor of removing both breasts. I am going in for a class on the 19th to discuss whether or not to use a drug like Tamoxifen.
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Thankyou, Hopeful8201 - best wishes to you as well!
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