New to BC and need a map

Bailee4

Hello everyone, I am Arlene and I have just been diagnosed with DCIS.  It's high nuclear grade, cribriform and solid architecture, with zonal necrosis.  No definite evidence of invasion.  My doctor says that if I have to have BC then this is the one I would want.  I'm waiting for a call for a wire implant and then lumpectomy.  Will likely need radiation afterwards.  Am already past denial and starting to think waay too much.  Is a lumpectomy enough?  Will it come back?  Thanks for listening.

IronJawedBCAngel

Hi Arlene,

Sorry for your having to join this "club", but things do get better, and you will meet some wonderful people along the way.  

Six years following my lumpectomy and rads, I am doing extremely well, enjoying life, no regrets or second thoughts on my chosen treatment plan.  I finished up my five years of tamoxifen last July, again with no major issues beyond the usual hot flashes and some joint pain.

Ask questions as you think of them.  Educate yourself as much as possible on your type of cancer so that you are comfortable with your treatment plan.  With lumpectomy or mastectomy, there are absolutely no guarantees that it will never come back, but most of us are fortunate enough to not have to deal with recurrences.  My attitude is that I prepare for the worst, but always hope for the best. I could get hit by a bus tomorrow, so there is little benefit of me worrying about something I can not control.

Hugs to you.  Wishing you a swift recovery.

Bailee4

Thank you IJAngel, Glad that you are talking to me six years after your treatment.  Your attitude is something I hope to emulate.  Want to be strong in this.  What you said about no regrets or second thoughts is very helpful right now.  Thanks again!  Arlene

sweatyspice

I would recommend you have an MRI before your lumpectomy.  Since you're going to have surgery anyway, it makes sense to me to do the best you can (given current medical science) to make sure there's nothing else lurking in your breasts.  It also helps answer the question "is lumpectomy enough."

I also think you should ALWAYS get copies of your radiology and pathology reports, and get a second opinion on the pathology (you can have your biopsy slides sent to another institution to make sure they agree on the diagnosis) and a second opinion on the surgery.  For me, the idea of someone cutting into my breasts was terrifying, and I needed/wanted more than one Dr's opinion on what was happening inside my body and what I needed to do about it.

Best of luck! 

cycle-path

IronJawed is correct that there are no guarantees. Eventually you will probably be sent to a medical oncologist (probably after lumpectomy) who will explain the recurrence statistics to you. If your doctor is recommending lumpectomy and radiation, s/he probably thinks that for your situation, the statistics for that treatment are good.

Regarding mastectomy: although it was never recommended to me, I very briefly toyed with the idea. I found out, however, that mastectomy causes the loss of all sensation in the chest. That was a game-changer for me. I don't think I'd mind being flat chested, but I know I'd mind not having any sensation in my chest. If I should get a reoccurance and need a mastectomy at some point, I can live with that. But I want to preserve feeling in my body for as long as I can!

So that's something to think about as well. You can always have more tissue removed later if it's necessary, but once you've had a mastectomy there's no turning back. 

Bailee4

Thank you for all of the information,advice, and your best wishes.  It means a lot coming from people who have/are going through the same thing.

shannonW

I wonder if all the breast cancer docs get schooled on how to deliver the line, "If u have to have breast cancer this is the one you want!" Mine said the same thing! I had a MRI but my DCIS wasn't clearly seen on it. If u have a lumpectomy and they go in and don't get clear margins they will have to go in again. Given that I had BMX on 2/25 a lumpectomy wasn't even an option as I had DCIS extensivley thruout my right breast. I just opted for BMX(I'm 40yo and a worrier thus the BMX. Plus I wanted to be even as I also had Paget's disease so a nipple-sparing BMX wasn't an option either.) I was able to have the BMX and no further traetment needed.  But, there is the loss of breast sensation so I agree one must really weigh their options, all the options and decide what's best for them individually. Get some books from Barnes and Nobles...they have a section on breast cancer. I love this forum too, but realize that prognosis for DCIS is really, really good. Sometimes you may only read comments with issues on here with DCIS and u may forget the good prognosis this disease.

Bailee4

Shannon, Oh boy, all of this puts life in perspective doesn't it?  We take our health for granted.  Stepping into this world of people who are so bravely going through this stuff is humbling.  I agree, that line is a bit disturbing but I can't think of a better way to describe it really.  Except maybe "fixable".  Thanks for the book advice.  I was cautioned by a nurse to stay off the internet because it would upset me and initially it did.  Now that I've found this site it is more like support and information.  Thanks for that!

sweatyspice

On lumpectomy and margins:

Remember that DCIS is invisible to the naked eye.  That's why they place the wire, so the surgeon knows where the "target" area is, and then the surgeon guesstimates an area to remove.  It's only when the tissue is under the microscope that it can be determined if there are "clear" or "good" margins - in other words, that there's no DCIS all the way up to the edge of the sample.  If the margins are "bad", the surgeon will do another excision.  (It can take about a week to get the pathology results, so this will be a second surgery.)

You have to accept a certain amount of risk that this will happen.  Every surgeon will have some percentage of re-excisions.  When I discussed this with one of the many surgeons I counsulted, they said that you don't want someone with too high a re-excision rate, say, more than 30%, but at the same time you don't want one who only has to reexcise 5% of the time, because that means they're almost always taking more tissue than necessary.  It's an art, and you have to accept some risk.

You take different risks with mastectomy.  Neither solution is perfect, you have to choose between two crappy options.  The trick is figuring out which you can deal with.  

One other thing:  the SNB or Sentinel Node Biopsy.  You have a choice regarding whether to do this as well.  If there's any evidence of invasion, you'll want to know whether the cancer has traveled to your lymph nodes.   If there's no invasion, if it's "pure" DICS, you can probably leave the nodes alone.  So that's another choice - do I want to have my nodes checked at the same time as the lumpectomy, or do I want to risk having a second surgery?

There is a small risk of lymphedema from SNB, like 3% or something.  Not much, but it exists.  And healing from the SNB is more painful than healing from the lumpectomy site.

As you can probably tell, I couldn't emotionally handle mastectomy.  I was a minimalist and did the least surgery possible (though I did have a huge surgery), and no one touched my nodes.

Bailee4

Sweatyspice, That's all stuff I did not know. Good information. I'm told that where I'm having my lumpectomy done the surgeon has pathology on standby and they will check the specimen before he even closes up the wound. I like that idea. That's what I'm going to do then and pray for the best. Thankyou. I've learned a ton in the past few days. Arlene

sweatyspice

What you're describing is a sort of quickie pathology, yes, it's helpful but they still won't get the final word for a few days.

MamaMia41

I agree with everything sweatyspice has posted.  The MRI is important information to have before surgery, you and your surgeon definitely want to know what's going on in both breasts before surgery.  Also, the pathology done during surgery is just preliminary and you will have to wait a couple days for the final report.

One "nice" thing about DCIS is that you have the ability to take your time with decisions because it is not a health issue at this point, but a breast issue.  Do get a second opinion if you feel you need one. You will know when you have come to the right decision regarding surgery and treatment.  Good Luck!

cycle-path

Regarding Sentinel Node Biopsy: I have to disagree with the esteemed SweatySpice on the issue of pain. I didn't find my sentinel node biopsy area to be painful at all. The lumpectomy was far more uncomfortable.

Also, even if the pathology of the lumpectomy tissue shows no invasion, there's still a small chance of invasion. That's why most docs still want to grab a couple of lymph nodes for biopsy. Just in case.

A lot of this cancer medicine stuff is what I call "belt and suspenders." A belt will probably suffice to keep your pants up (i.e. keep the cancer away), but with suspenders you can be double sure that you're covered. Some women decide to forgo radiation or tamoxifen or whatever, and that's our choice. The doctors would prefer that we use both a belt AND suspenders, but some of us don't want to do that.  

Bailee4

I'm guessing that most of you are living in the states?  Can you get any test you want as long as you pay for it?  Here in Canada we basically get what the doctor thinks we need unless we demand it.  If I asked for an MRI then I'm not sure he would order one and if he did then I'd have to wait 6 months for it.  Our health care system isn't as good as it was 15 yrs ago.  Even though almost everything is free, people are opting to cross the border; pay for it and get it done more quickly.  People are waiting forever to get tests and treatment.  The system is top-heavy.  Feeling a little like a passenger and not  a driver or navigator on this trip.

sweatyspice

I live in NYC, and yes, basically we can probably do whatever we want as long as we're willing to pay for it.  That said, paying for it can be hideously expensive and therefore we complain about our health insurance system quite a lot.

Regarding Cycle Path's comments on SNB, well, true, since I didn't have any nodes taken I can't speak about the relative pain from personal experience.  I've had women tell me the pain from their node removal was worse than the lump area, but I suppose that's individual.

And in terms of the idea that they can miss an invasive area in pathology of the lumpectomy tissue,  true, but unlikely.  Doing a SNB is insurance that an invasion which has already traveled to the lymph nodes won't be missed, but again, I'm sure it's possible to miss things in that pathology analysis too.  I guess it comes down to percentages of error, andhow much risk you're willing to take.  

I'm making this up and suggest you speak to your Dr about it to get some reality about the numbers....but suppose the chance an invasion is missed on lumpectomy pathology is 5% of the time and the chance of it still being missed on node pathology 1% of the time, but the node surgery gets you a 3% chance of lymphedema.....    it's about balancing the risks and determining what you can live with, in my opinion.  

Valnyc

Hi Arlene- I had a similar diagnosis. Same type of DCIS but with a rather large area of calcifications (4 cm).  I had a lumpectomy with bilateral lift and reduction on 3/24. I did have a MRI prior to meeting with surgeon ( I am also in NYC) and I think it was helpful in deciding to go with the lumpectomy because the MRI did not show any areas of concern other than what was shown on the mammogram. You should speak with your surgeon about a SNB so you can make sure you know what the risks are in having or not having it. My initial biopsy did not show any microinvasions so no SNB was done but the pathology report from lumpectomy showed two microinvasions so the bc team's "reluctant recommendation" was to have SNB which requires a second surgery.  It is disappointing because I am just starting to feel better after the initial surgery and now I have to have the SNB next week. I am not sure I would have made a different decision but I did not really understand that I might have to have a second surgery for the SNB. I could forego the SNB because the risk of node involvement is still low but I am not willing to take that chance. At any rate, I am sorry you have to have to deal with all of this.  The decision making process is hard with DCIS. Val

cycle-path

Bailee -- yes, in the US we can generally get just about any test we want if we're willing to pay. But I might, for example, have trouble getting something like an angiogram, even if I agreed to pay the whole thing out of pocket, because I have no heart symptoms. But anything that can be considered medically necessary is available. Sometimes the insurance company won't pay, though, and then one has to pay the whole cost. 

It's not unusual to have to battle one's insurance company to get them to pay for the tests. I know my doctor's office has one person whose near full-time job is getting insurance companies to agree to cover MRIs. And the amount the insurance company pays is tiny relative to what it costs the doctor to do the procedure. The doctor's profit is extremely slim. 

Bailee4

cycle-path- I very much appreciate that everything is covered here and feel that having to fight with an insurance company is the last thing you need on top of everything else. Sweaty-spice- I hope  that when I see the surgeon he will be clear to me about what he knows and why he recommends what he does.  As far as the pain of SNB's and such; Usually when I'm up against a painful thing I can look past it to hope it's worth it for a good result and so as everyone says, if we can get rid of what needs to go the first time with  less chance of spreading to a place that we can't stop it anymore then that's the best! Being unable to see it with the naked eye does make it very tricky. Valnyc- I will ask about an MRI and see what they say about this.  One thing is for sure and that is I will write down all of my questions so that i don't forget anything.  I'll also have to get rid of my fear that I will be labeled as a "difficult patient" big time.  Thanks, Arlene

Bailee4

Val, I'm sorry that you have to deal with all this too.  Found out today that the area of calcifications is 4cm for me as well.  Surgeon wishes an MRI and biopsy of node.  Hopefully can get that done quickly as the wait times for MRI's are long here(months).  Just want to keep things moving you know what I mean?  Have you had your SNB yet?  I pray they are clear.  Arlene

IronJawedBCAngel

You may want to connect with some of the other Canadians here.  I lived in Canada for 12 years and  when a doctor ordered a test for a life threatening disease, I got them in a timely manner.  There are several Canadians here who are also getting their treatment and testing in a time frame similar to those of us in the US.  I do know it seems to depend on which province you live in, but it certainly would be good to connect with them and get their advice.  Good luck as you go forward.

Valnyc

Hi Arlene- With 4 cm of calcifications, you may find your surgeon recommends a mx. A lumpectomy may still be possible although the results will probably be better aesthetically if a ps works with the bs. Pm me if you want more details on my surgery. My snb was Monday. I stayed at home Tuesday but am back at work today. I won't get the pathology report until next week but the bs said the node looked normal (I was apparently shown the node but I don't remember). It hurts some but much less than my initial surgery. It does itch like crazy though!!! Val

Bailee4

Val, At the risk of sounding dumb, what is a ps and a bs and Pm? There is sure a whole new lingo to learn.  plastic surgeon, breast surgeon?  Ah and private message.  I think I get it. lol  Arlene

sweatyspice

Arlene - your interpretation of all the acronyms is correct.  : )

LynGal

Did your insurance pay for IORT?  I am currently battling my insurance who has denied almost thirty thousand dollars of IORT.

Moderators

Hello Bailee, and welcome to BCO.

As well as all the great information you've heard from other members, a couple of other useful links:

Discussion Board Abbreviation Key - what those confusing short forms mean!

Mastectomy vs. Lumpectomy - factors to consider, from the main Breastcancer.org site.

• The Mods

LAstar

Some research indicates that the extent of high-grade DCIS is better detected with an MRI than with a mammogram.  I had an MRI between my lumpectomy and re-excision and it showed that the DCIS was much more extensive than previously indicated.  I eventually had a MX and I wonder if I might have skipped some surgeries if I'd had the MRI before the lumpectomy.  I hope your treatment path is smooth and short!  It does happen!

Bailee4

LAstar an update from last year when I started this "journey": Mammogram was Feb surgery was not done until June 29th only to discover that along with the DCIS was a triple neg tumor .8 cm with no node involvement.  I had an MRI but it did not pick it up.  Had the chemo and radiation after the lumpectomy.  Have had another biopsy due to an area on the MRI that looked suspicious in July but that is neg. I did ask every doctor and nurse that I came across if a MX was in order but they all said it would not effect the outcome so I've chosen not at this time.  If there are any other areas that crop up my surgeon and I have decided that will be the time to opt for that surgery. Now just going on with life in hopes that this roller coaster ride has come to an end. If not then I will deal with that (with help from above) when and if it happens.  People like you who have shared their stories  have been a great source of knowledge and inspiration to me.  I hope that all of this is history for you as well and that you can go on and enjoy your life!  Arlene