1st Post -- Soooo frustrated with wait time from dx to surgery!

tamld17

UGH!  Leave it to me to complain on my first official post! 

I'm a 40 year old who, out of worry and neurosis, has been getting routine mammograms for 3 years.  My routine on 8/25/11, for the first time, showed some microcalcifications and after another mammo and stereotactic bx, I was dx with L breast DCIS, high grade (III) and approx 3cm, I think...  I received my bx results on 9/7/2011 and finally have a surgery date (UMX with tissue expander placement) for 10/21/11.  Is this normal to wait almost 2 months?  If so, how horrible!  This has obviously happened in less than 12 months to begin with, and now I have to wait 2 more... I'm obviously frustrated.

Also, I've been reading through other posts and see that many know hormone receptor status and BRAC2 testing results?  Should I be having these done before my surgery?  I have over 17 years of critical care nursing experience and actually (and ironically) just finished a Women's Health rotation in August in my nurse practitioner program (I graduate in Aug 2012), but feel absolutely clueless. Needless to say, I'll be doing my PhD work on breast research...

shannonW

Hello! First...breathe deeply! No it isn't unusal for time lapse b/t dx and surgery. The breast and plastic surgeon have to get their schedules coordinated to be there for ur surgery. That takes time to coordinate 2 busy MD's schedules. DCIS is cancer, but since it's in situ, not yet invasive you can take a little time process things, get prepared for surgery and even get 2nd opinions(if you feel necessary). Guess what I'm saying is the urgency with DCIS is somewhat less than with other invasive cancers. I'm not making light b/c the feeling for me was the same when I heard "you have a type of breast cancer." from the radiologist. A blow to my gut and my life flashing b4 my  eyes. But you have options and time. Also, I'm a PTA and work at my local hospital. From one health professional to another I know you see a lot of bad stuff, and often worst case scenarios. This can drive you crazy. Imagining the worse.Personally, I have had to take breaks from this forum. I love all the support but it's a lot to read the stories and experiences. It keeps all the cancer so "fresh" even tho I'm almost finished with all my plastic surgery(except for the areola tattooing) and didn't require tamo, chemo or rads. Also, you will find that some get on here intitally for DCIS then sort of fade after their  treatment b/c they "move on" in a sense(partly d/t the high survival rate for DCIS) and no longer need to post as much. Get copies of all your reports so you can have them. I have a large folder for mine. As well as a bag designated with all my breast cancer books, resources, etc. Also helpful, a binder for the insurance papers...there will be lots of those! My MD tested me for the BRCA gene d/t age(premenopausal=young) and the fact I have daughters. I tested negative but it was nice to know this. My hormone receptors for ER/PR was given in pathology after BMX report. Did not get the HER-2 status at all  as I don't think it is an issue with DCIS but others may chime in here if I'm wrong. I had a few weeks lapse from dx to surgery. I used that time to eat healthy, exercise, and get ready to heal post-op(I was off work for 5.5 weeks with BMX and I work 2-3 days/week). I even went for a massage the day b4. Figured it could only hhelp my mental health! All the best to you.

Beesie

Ditto to everything that Shannon said!

A 6 week wait to coordinate a mastectomy with immediate reconstruction is not unsual, particularly for those with DCIS, where the urgency is not a great as it is for someone diagnosed with a large aggressive invasive cancer. Waiting is never easy but I found that the time went by pretty quickly (I had a 2 1/2 month wait between my excisional biopsy and my mastectomy / reconstruction) with appointments with my PS, an MRI (my surgeon wanted to ensure that he had the best possible idea of what was going on prior to operating), another biopsy (other breast - benign result, thankfully), pre-surgery tests, etc..  And in the couple of weeks before I surgery, I spent a lot of time preparing myself and my home and stocking my freezer, knowing that I wouldn't be able to lift and reach and carry things normally for a few weeks after surgery.  

Waiting is a pain, but consider that it's a positive sign that your surgeon doesn't feel the need to rush you into surgery! 

xtine

Hi Tammy,

While that type of wait is probably quite normal and OK for a DCIS surgery with reconstruction, I understand why it's frustrating. For me, I received my diagnosis at the start of October and was first told that I should have my uni-mx by the start of November. While I started by being in denial, once the gears were over I wanted my surgery over with ASAP. So when the coordinator called to schedule me for late November I was pretty disappointed. I think I said something of the sort when she scheduled me, and she obviously got the message. A few days later she called and re-scheduled for November 2nd. I had to change plastic surgeons to get that date, but the new surgeon was well-recommended. So, if it's really important to you to get things over with, it might be possible to push the dates up if you talk to them.

As for the BRCA testing, I did get my testing done prior to surgery. That was the recommendation of my doctors, as they suggested that if I was positive I would likely want a bilateral instead of unilateral surgery. They were able to rush my results for a week after the blood work, so I had them well before surgery (negative).

Mantra

Tamld17, I've sent you a private message

TheLadyGrey

I have almost your exact diagnosis on the exact date- 3cm comedonecrotic grade 3.



Since then I have consulted with two surgeons, had an MRI and biopsy of the other breast (benign) and have a third surgical consult on Monday. Surgeon number two said they shoot for surgery within three months of diagnosis.



Both surgeons have recommended a double mastectomy. I'm angling for a lumpectomy and if it takes a couple of months to completely rule that out, so be it.



During my second biopsy I mentioned to my radiologist that the proposed treatment seems extreme to me given my understanding of the risk. While 3.5 cm is in the lumpectomy range, it's on the largish side and there are other calcifications floating around in both breasts.



My radiologist was nice enough to sit down and really study everything. She thinks there is a good chance that the lesion is only 2-3 mm, not cm and that the larger area reflected in the MRI is he result of trauma - they really had to dig around so a had a lot of deep bruising.



So I'm probably going to have another MRI. I'll be shocked if I have the surgery in the 3 month time frame.



Just make sure you aren't deciding because you feel rushed. I was ready to schedule the double after the first comsultation but then the doctor's office made me really mad. I am so glad I didn't - even though I suspect I will end up with at least a single, as a matter or temperament I need to KNOW exactly why. You really do have to be your own advocate. This is permanent stuff.



In the meantime, I'm gathering lighthearted reading material and movies, sleeping/resting 10 hours a day, exercising, eating well, etc. I've run half marathons and done triathlons and I'm convinced that, like those races, a lot of the preparation for this is mental so as I go through my daily routine, I think "how are you going to do this if you can't lift your arms above your head or lift anything?" then I make a note of what it is and problem solve. It gives me the illusion of control....

Anonymous

tamld17 ~ You've gotten some wonderful advice and I just wanted to chime in to answer your "is this normal?" question.  I was diagnosed 10/6/10 and had my surgery 11/30/10.  Pretty similiar to your time frame.  In my case it was because of the PS and BS coordinating their schedules.

tamld17

First off, thank you all so much for the support.  I tend to be a bit of a control freak, and not having control over when I'm having surgery is very frustrating for me. 

I'm surprised that your surgeons are suggesting a BMX for you LadyGrey... I practically had to fight with my surgeon for the UMX, (and he doesn't believe in getting MRIs either...) we have the exact same diagnosis.  When I told him my decision for a UMX (I was afraid to even suggest a BMX), he looked at me as if I had two heads... I asked him why the strange look, and he was confused as to why I didn't choose what he wanted for me.  It sounds like we should switch surgeons (except I hate ignorant, judgemental nurses too, so that first one you saw is a big NO for me too . 

I told him it's my body and my choice, and my self image isn't based on whether I have one or two breasts....  I am very well informed and have done the research...this is what I do for a living... critical care clinical research for a very large university.  And he has the nerve to look at me and my husband oddly, (who is also a physician) and wonder why I would even dare question him...  seriously, give me freaking break. 

When it comes down to it, lumpectomy vs MX research shows that both are equally effective in DCIS.  I don't have the time for 6 weeks of radiation, and have 5 kids who I don't want to put through a long-drawn out treatment. Showing up for rads 5x/week for 6 weeks?  I'm lucky if I remember to take my vitamins and Nexium in the AM.   We have a busy life and busy schedule.  I want to be back to work as soon as possible.  I want my kids' lives affected as minimally as possible.  And honestly, the risk of recurrence (although very low) is still concerning to me and the chance (which is 1 in 10) that I have to back right after a lumpectomy for more tissue excision is too high for me.  Additionally, I'm only 40 years old.  I don't want to have to do this again in 2 years, or 5 years, or 10 years, and so on.  I want to do this once (hopefully). 

Emaline

Wow LadyGrey, I'm shocked that they are recommending a double MX for DCIS.  I wonder why.

dense

I found out my diagnosis on 9/11, had MRI on 9/13, met with BS on 9/15.  Then everything stopped.  The surgery is not scheduled until 10/5.  I so wish it were quicker. 

All this time on my hands has caused me to go absolutely crazy thinking about all the horrible things that can be found at surgery or pre-op.  My lump did not show up on the mammogram, and according to the radiologist even the MRI is hard to read because of my extensive nodular tissue.  So I am just imagining that I am full of nasty stuff, and that I have been full of it for years while getting mammograms and thinking all is well. 

I have been looking and posting to the various threads here, but I do not know if it is helping me or is just getting me more frightened. One day my lump felt smaller, and I was all excited -- because I had read that some tumors can disappear on their own, and I thought maybe by some miracle mine would.  But today it is back to its pre-biopsy size, maybe even bigger, and I am all worried again, thinking it's a super agressive kind.

My stomach has not been right since the biopsy.  I think I am scared sh@#less, quite literally. In other words, I can imagine how you feel. 

TheLadyGrey

They are recommending the bi for cosmetic reasons and because I have all these random microcalcifications scattered around through both breasts.  I think half the time they don't really tell you everything though.  I also think there is a certain art to it -- both surgeons have been doing it for over 30 years and they may see something on the mammograms that they can't even articulate -- like Malcolm Gladwell talks about in his book "Blink".  And they are both older so the whole lumpectomy thing is relatively new and likely slightly suspect.  

Tamid, this is why it is SUCH a highly individual decision.  The radiation is going to be shall we say challenging to complete from a logisitical standpoint as it will likely span the winter holiday, but on balance I would rather do a LOT of driving to make that happen than deal with the double M risks and recovery.  I don't have kids depending on me and I am not good at depending on others so being helpless/ill/dependent for =/- a month is terrifying.

I also need to better understand why a single is not seen as an option.  I don't recall anyone ever actually saying it but somewhere along the way I got the impression that my left nipple is toast regardless so it will always look goofy.  Need to clarify that.

The reality is we are all deciding between bad options -- no one is going to CHOOSE any of this.  The thing is to be confident that you are doing the best thing for you.  

Sigh.  I don't recall signing up for this in "Life School".   

Hindsfeet

Ladygray, you are right, we are deciding between bad options. Here's the thing about high grade dcis. It is a very aggressive type of cancer. I too thought a mx was over treatment, but maybe not for those who have high grade dcis. I now wish December 2007 that I had a blmx than a lumpectomy. Becuase the stupid high grade dcis cells keep coming back. I'm again perhaps having to deal with it. The rad doc believes that I have a recurrence. And to add that dcis can hop around...mine did.

mrsnjband

I used to feel the way you do thinking 2 months was so long. It took 2 months to get my diagnosis, but really that is relatively short amount of time.  Sometimes it takes that long or longer to get into a specialist. I thank God I got into & was diagnosised by my breast specialist in 2 months. 

As to the MX, it is your choice if you want it. If you want, you can have the bilateral mx. I chose BMX because of the high rate of reoccurance of IBC (Inflammatory breast cancer).  My doctor said it was my choice and if that is what I want then that is what she would do. 

Decide what is best for your & do it.  NJ

TheLadyGrey

Eveberry, that is what makes this so incredibly hard - because you can't know until afterwards whether your choice was right. Every single woman I have talked to about this has said "I would have already had the double M. What is wrong with you? Are you nuts?"



So I wonder whether part of my resistance is the denial thing. I have nothing - no known risk factors, no history of ANY cancer in my family -- mostly they die at 90 in their sleep.



Except it turns out I do have some history.



My paternal grandmother had breast cancer in her 70's - I am told it metasticized from lung cancer - she smoked two packs of Parliaments a day for at least 50 years.



I'm told that is not relevant as it only counts if she was 50 or younger on diagnosis which is a great theory except she dies in 1977 and who knows what the screening level was or whether she ever had a mammogram in her whole life. If, in fact, DCIS can take decades to get mad, maybe breast went to lung.



Talking to my mother (!!!!) about the history thing on Monday she remembered a blood related first cousin who died of ovarian cancer in her twenties - that would have been in the 1950's.



They say grandmother and cousin don't matter because of age and degree of blood relationship, but there was a time when they didn't think family history mattered at all.



Accepting that THEY DON'T KNOW has been tough.



On the othe hand, it turns out my pathologist (again, two words that should not be put together) is a hugely nationally recognized expert so perhaps they see him saying "comedonecrosis" and think - "well, done there - he flat knows."



It's a puzzle for sure.



Weighing the factors and opinions is hard. If the third surgeon says double M, I'll say uncle.



Sorry if I'm thread jacking, but the similarities are spooky!

HantaYo

Namaste!

For me, the wait for the surgery was the worst.  I did not have a choice for lumpectomy because I had DCIS in three places in 2 separate quadrants and one was possibly invasive and the surgeon said I needed a mastectomy. He felt that if I had it in multiple places on initial finding, that it was proablably also in other areas of the breast and not just identified yet in the other areas.   I chose bilateral because I wanted it for best chance at symmetry in reconstruction.  It was my right to choose so without question. As it turned out I had a pre cancer in the prophylactic side.  I could have had the BMX within two weeks but I chose to have immediate reconstruction with TEs and thus had a wait of 6 weeks from decision time to OR because of the BS and PS needing to coordinate schedules with available OR time. I begged the Drs office and the head of surgery to find me a sooner time. I was so upset about the wait and inability to control it that I just laid down on the kitchen floor and sobbed.  My husband didn't know what to do.  He just took off work for the day and sat with me.  It was the only time I really lost control.  As it turned out they had to abort the attemped first stage reconstruction because so much skin died and so I could have gone with the 2 week plan.

Many have already given you some good suggestions on how to make the time pass with getting ready.  The time will pass.  It just sucks for right now.

I believe I would have chosen a BMX even if lumpectomy had been a choice.  I did not want radiation.  I am an RN and had seen some horrible responses and although I know that most do very well with radiation I would not have wanted to take the risks asssociated with that.  Also, it is my understanding that although the survival rates with lumpectomy and radiation are near the same as with a mastectomy, the recurrence rates are higher with lumpectomy.  bMX also gave me the choice to do hormones or not which I chose not to do.

Karla

Beesie

TheLadyGrey, you said that "Every single woman I have talked to about this has said "I would have already had the double M. What is wrong with you? Are you nuts?""  Having been in your shoes myself, I certainly wouldn't say that to you.  I had a single mastectomy - too much DCIS in a small breast - but there's no way that I would have had a bilateral unless it was proven to be necessary.  In your case I appreciate the concern that you have random calcifications throughout your 'good' breast...but the fact is that approx.60% of women get calcifications at some point during their lifetime so simply having calcifications does not mean that you have breast cancer or even a high risk condition.  I had microcalcs in my 'good' breast too. They were biopsied and found to be benign - completely and totally harmless. Yours may be harmless too, but then again they might not be.  If you don't want to have the bilateral, that's the question that needs to be answered - are those calcs harmless run-of-the-mill calcs, or are they a sign of trouble?  As for your doctors recommending the bilateral for cosmetic reasons, I've posted to you before that I think that's total 8ull$#!t! (Well, I don't think I put it quite so strongly before).  I would fire any doctor who told me to remove a healthy body part simply for cosmetic reasons. The doctor is making the suggestion because it makes his job easier - no worries for him about trying to achieve symmetry between a natural breast and a reconstructed breast!  If your doctor was diagnosed with testicular cancer in one testicle, would he choose to remove both testicles so that he would appear even?  All that isn't to say that a BMX isn't the exactly right decision for many women - when it's their decision, for their own personal reaons. It's when a doctor suggests unnecessary surgery that I get concerned.

Tammy, in reading your reasons for choosing a mastectomy over a lumpectomy, the one thing that I want to mention is that in going with the mastectomy/expander, while you won't be faced with 5X/week for 6 weeks radiation treatments, you will have to visit the PS several times for fills and you will have at least one more surgery to have the expander removed and the implant placed. Additionally, about 30% of women with implant reconstruction have a revision surgery within the first 3 years - reconstruction doesn't always go quite as planned and revisions may be necessary. The other thing you should know is that while some women breeze through the expander period (I did), other women find the expander to be very painful. There is no way to know how manageable it will be for you until you go through it. If you are one of the unlucky ones who has a difficult time with the expander, you need to consider that you'll have the expander for at least 3 months and more likely anywhere from 6 - 9 months.  Lastly, it's also important to understand that while in most cases it's not necessary to have radiation after a mastectomy for DCIS, if it should turn out that you have very narrow margins, particularly by the chest wall, radiation might be recommended even with the mastectomy. This isn't likely but there are a few women on the board now who've had this happen.  Just something to be aware of.  I'm not saying any of this to talk you out of your decision  - if it's right for you, then do it - but only to ensure that you know what lies ahead and that you're prepared for whatever might happen. 

Hindsfeet

Ladygray, the idea of a mx scares me to death. I don't want to lose my breast. I like the feeling of that which is natur-al. If I were to lose my breast,( I've had cancer in both breast), I fear the process of reconstruction. I don't think I could handle not having breast...just me. Plus, up to now, I didn't want to over react and be scared in to overtreatment or a mx. But, after 3 now dx, I don't know if I can keep doing this. I feel worn out by it all. Highgrade cancer cells are aggressive, and potentially if left alone likely to become invasive.

As far as califications as said by the radiation doctor what they look for is irregualr types of califications. They said in most cases when califications are found and are round the patient come back for another mammo in six months. But mine this time again were irregular, and with my history they suspect a recurrence. Plus, if califications are found to be linear the doc said its cancer. I was surprised that yesterday, and the cancer in 2008 (in the dcis right breast) that the doc was so bold to tell me it was cancer before the biopsy. Hope not. I will be happily surprised at this point if its not. Very happy. I would love it if especially my right dcis breast made the 5 year mark...then I will feel safer.

The other thing to consider in choosing treatments that is not often mentioned here that clean margins don't always mean a clean breast. They said that my dcis hops around. I never heard of this but it can happen. This would be another supportive reason for a mx. And if you choose to forego treatments such as I did taking the watch and wait approach...make sure you do your annual screenings. Some are lucky and don't have recurrences, but if you do have a recurrence, you want to catch it early. 

Emaline

I had a uni-MX and do not regret it at all.  If something were to happen down the line, then it does.It can also happen if you have a BMX.  Having a MX whether a uni or both, it drastically reduces our chance of cancer coming back but it is not 100%.

It is odd, prior to my diagnosis I always said if I had cancer, they are taking both breast. I am just not dealing with it anymore. I really don't think there is anything wrong with that.  For many women that is their comfort level.  Once I got my diagnosis and did the research and talked to the doctors, I decided it was not MY comfort level to remove a perfectly good body part.  It was also not something either of my doctors recommended.

However I do know what you are talking about. There are a lot of people who do think that those of us who get the uni-MX are nuts and, yes there have been some posts (not this one), that I have found to be hurtful but I honestly don't think the women who made the comments actually meant to be hurtful or offensive, I tend to believe they just came off wrong.  I do believe that most of us know what a deeply personal decision this has to be, and why there is no flat out right answer for every one of us.