Frustrated!

psstl

I am so frustrated with trying to figure this disease out and getting conflicting information. My world was turned upside down on the 22nd when the nurse navigator called to tell me that I did indeed have cancer following the stereotactic biopsy I had on my right breast on the 17th, but the good news was that it was early and treatable. I saw a surgeon who told me the same thing and after describing DCIS to me (she called it stage 0 and referred to it as early stage cancer), gave me the decision of whether to have a lumpectomy, radiation and hormonal treatment or mastectomy. I was having a hard time wrapping my head around it, so started reading everything I could get. I finally came to accept the diagnosis and everything I read encouraged a second opinion. I was shocked today when the surgeon I went to for a second opinion started off the consultation by telling me I don't have cancer, I have pre-cancer. What the ??? I realize some people call DCIS pre-cancerous, and I get that it is non-invasive, but why is treated as cancer then?  After bantering about for a few minutes, I told her not to call it pre-cancerous, because if she did, I was not as likely to want to accept treatment as if it were cancer (in other words, cut it out of me and let me go on with my life without further treatment - after all, it is non-invasive and that is why she wouldn't call it cancer). She spouted off statistics - and here is the other thing that bugs me - I hear how my chances for recurrance are greater (focusing on the negative). Now you would think hearing that would make me happy, but it is has done nothing but confuse me. She also told me it is estrogen and progesterone negative, so that it was not necessary to follow radiation with hormonal therapy. This hormonal tidbit is in conflict with what the first surgeon said. I am so frustrated that I just don't know what to do. 

I know that what I have is not going to cause my demise and that I do not have anywhere near the fight that alot of ladies have, but I do have a fight nonetheless and it very likely may cost me at least one of my breasts. For some reason it just really bugs me that DCIS isn't considered a "real" cancer. I know these professionals don't mean to play with my emotions, but I feel like I am going to need a psychologist to sort through all of this. I have stated to my friends and loved ones that I am not going to let the cancer have power over me and I mean that. But the medical professionals? They are dealing me a head trip!

prayrv

psstl,

I bumped the post from Beesie - I'm sure that will help you answer some of your questions.  Here's a link in case you can't find the thread

http://community.breastcancer.org/forum/68/topic/727963?page=3#post_1750740

Hugs,

Trish

Beesie

Yup, I have said in my posts many times that I believe that it is irresponsible of anyone in the medical profession to call DCIS a "pre-cancer". 

The reason I say that is exactly because of the type of reaction that had, psstl.  I consider myself very lucky that I never encountered that attitude but if I had, I know I would have been royally pissed.  I did not lose my breast to a pre-cancer (and yes I had a microinvasion too but it was the amount of DCIS that I had that led to the mastectomy, not the IDC) - I lost my breast to an aggressive pre-invasive cancer that was on the verge of turning invasive, possibly becoming life threatening.  

psstl, read through the DCIS forum.  You'll find that your feelings are echoed by most of us, so know that you are not alone.  There are a few threads that specifically talk to this.  Here are links to some:

Is DCIS cancer?  http://community.breastcancer.org/forum/68/topic/747279?page=1#post_1689856

Should I feel lucky? http://community.breastcancer.org/forum/68/topic/746595?page=1#post_1669677

please stop minimizing my diagnosis http://community.breastcancer.org/forum/68/topic/696681?page=5#post_1530835

3monstmama

I certainly understand where you are coming from.  Before I settled on my treatment plan, I had a co-worker who actually had DCIS tell me the same thing when I had my surgeon telling me a mastectomy was an option because she felt my DCIS was too close to the nipple for cosmetically good lumpectomy results.  I can still hear the co-worker's voice and tell you where I was--in the office lunch room--when she said "but its not even really cancer, how they tell you might need a mastectomy?"  Those words just cut to the quick, making me second guessing everything I thought I had decided.  On the bright side, talking to me about it seemed to have scared her so much that she stopped asking me anything about my breast cancer. . . .

As my husband wisely said, maybe she deals with having breast cancer by saying its not cancer and if you have what she had and yours is cancer, then her delusion is shattered.

That said, it sucks but you do have cancer and you can't ignore but if you are not feeling comfortable with your decisions and treatment plan, IMHO, you shouldn't go ahead with surgery.  So much of recovery really seems to be linked to attitude and how we feel---if you don't feel good, step back, take a deep breathe and think before you leap.  The one "convenient" thing about DCIS is that you can take the time to think about the options.

I did get a second opinion and I felt much more comfortable with surgeon #2 than surgeon #1. To me, finding the right surgeon and team---people you feel confident in--is really key.  Surgeon #1 had more experience than surgeon #2 and was more willing to go back in for reexcission so I have ended up with a lumpectomy.  My lefty does look smaller than my righty but with clothing on, you can't really notice it.  With clothing off, well, my husband is just happy I'm not going anywhere.   My oncologist said that grade 3 DCIS will become traditional invasive cancer, its just a question of time.  So while there may be questions about what grade 1 DCIS and grade 2 DCIS will do, grade 3 DCIS [what you and I have] is a different story.  This means as much as I didn't want to, I'm doing rads [got fitted out and start on the 23 of the month].  And I will give the tamoxifen a try---I have already had a hysterectomy so some of the tamoxifen risks are irrelevant to me.

Are the people you are seeing at a major cancer center?  When I wasn't sure what I was doing [and thought my cancer might be more complicated] I had an appointment for a second opinion set up at a major cancer center.

hang in there!!!!!

psstl

Thank you all so much for your replies!  It is a huge comfort to know others feel the same way I do! I had my mom and my daughter with me yesterday for the conversation at the 2nd surgeon's office and when I told them how I was feeling as we were leaving, my daughter told me I was being hard-headed. I don't expect her to understand though if anybody else had said that to me, I would be highly po'd.

 Beesie, I read the threads and you posted some great information that I found to be very helpful. You are a blessing to all those on this board as are all of you! Thank you for taking the time to read my rant and taking the time to reply. Every post brought me comfort.

I have pretty much decided to have a lumpectomy followed by 6 weeks of radiation. The tamoxifen is where the two surgeons differed, so will be seeking a third opinion. My mom had three lumpectomies and then finally a mastectomy following her breast cancer seven years ago, it started as DCIS but recurred as stage 1. Because of that I was leaning toward mastectomy to begin with, even made appointment with a plastic surgeon, but I am just not ready to lose them without a fight. If I have a recurrence, then I will have a mastectomy without even having to think about it.

What a great sisterhood! Thank you all!!

June2268

Psstl did your mother's recurrence happen within the 5 years after diagnosis so did she not have the Tamoxifen due to a lower grade like 1 or 2?  So scary and even frightening at least it sounds like you have a wonderful support team with you even in your daughter doesn't quite get it....

dsj

psstl, My suggestion is for your third opinion to be with an oncologist, as they are the ones who do drugs.  As it was explained to me, breast surgeons are best at the surgery, radiation oncologists at the radiation, and oncologists at drugs as well as overall care and follow-up.  I don't think you need to see the oncologist til after the rest of it though, as he/she will want to see the full results of the pathology report from the lumpectomy before deciding.

psstl

June 2268, my mother's cancer recurred twice within 2 years following primary. She had 6 weeks of radiation and was taking tamoxifen at the time of recurrence. Her second lumpectomy was actually a re-excision because of lack of a clear margin with the first one. Third lumpectomy was  a year later, and the mastectomy about 6 months after that. Thankfully she has not had a recurrence since then. Surgeon #1 told me that it is likely my cancer is more a coincidence than genetic since other than my mom, there isn't a history of breast cancer in my family. My gut feeling is that it is not coincidence. I called my mom after my biopsy and I was telling her that though this is what she was diagnosed with, I hadn't felt before this that I was particularly genetically susceptible because she came from the generation that doctors gave hormone pills to like candy (ok, I admit that is not very foresighted). When she told me she never took hormones after menopause, I knew in that moment what the biopsy result would be, even though I am 20 years younger than she was when she was diagnosed. As I write this, I am wondering if I am crazy for not going with a mastectomy to begin with, but just can't go there yet.

psstl

dsj, you make a great point. Thank you! I have been thinking today that I am obsessing too much and that I need to go ahead with the lumpectomy and wait for the final pathology report. I failed to ask surgeon #2 why she felt I have ER-/PR-, I can't find this anywhere on the pathology report. I had a list of questions to ask her, which I did, but kind of shut down on new information because of her "pre-cancer" statement.

psstl

laurakay, I feel your pain sister, it is such a difficult decision to make. Bottom line is you have to go with your gut feeling. Praying for you!

IronJawedBCAngel

Just my opinion, but I do not have a doctor on my team who thinks of DCIS as "pre-cancer".  When I tried to find an oncologist in the town I live in vs. the city I had my treatment (2 1/2 hrs away), that doctor made the comment that I "just" had DCIS and that I didn't need to worry my head about it.  I chose to stay with my original oncologist.  I will try to do some research but I believe there was a time when tamoxifen was the drug of choice for DCIS and LCIS, regardless of hormone status.  I do believe that there are times when mastectomies are medically necessary for DCIS, if the area is very large so that a lumpectomy would be disfiguring, they can not get clean margins or when it is multifocal. It is impossible to know for sure which DCIS will remain non-invasive and which will progress.  Mine was grade 3 but very small so a mastectomy was never suggested by my doctors.  It will be five years for me in April and I am doing very well.  I want my doctors to take my DCIS seriously so that they maintain a good screening program so that I can focus on living my life.  I am aware of my body and the changes that occur.  There was a study regarding DCIS a few years ago that indicated that a good percentage of the women that recurred were being diagnosed with more advanced stage cancer.  I genuinely wonder if some of those women do not take their DCIS seriously, and therefore are not perhaps as diligent about their followups because they have doctors who view it as "just" DCIS.  In the early days after diagnosis, this is all very confusing for all of us, but please just educate yourself as that knowledge will give you the power to make informed decisions.  Living Beyond Breast Cancer has had some really good teleconferences about DCIS.  There is also a website called. dcis.info.  God bless all of you as you go forward and give you the strength and wisdom to make the best choices for yourselves, and yes, many times that involves getting a second and third opinion until your questions are satisfied.  I would not proceed with any procedure until I knew in my heart that I was comfortable with my decision.  Do not let anyone pressure you into rushing into anything.

Beesie

psstl,

I second dsj's suggestion that you talk to a medical oncologist about the Tamoxifen decision.

And I understand your comments about thinking that your cancer might be genetic, even though your surgeon doesn't think so.  My mother had BC, although she was 80 when diagnosed.  One of her sisters had BC pre-menopausally and there is prostate cancer (which is also related to the BRCA gene) on my father's side of the family.  So I had BRCA testing, which came back negative.  Still, like you I've always felt that my cancer was genetic.  The fact is that although it's stated that only 10% - 15% of BC is genetic, this refers only to known genetic mutations.  My genetic counsellor explained that in all likelihood there are more genetic mutations that are yet to be discovered, and there are other known genetic links separate from the BRCA genes.  For example, high breast density has recently been identified as a significant risk factor for BC.  In most women, breast density reduces as they age, particularly as they enter menopause.  My mother is in her 80s and still has very dense breasts.  I'm post-menopausal and my breasts have been identified as being "extremely dense".  So, did I inherit my dense breasts from my mother?  And for both of us, did it lead to our breast cancer diagnoses?  There's no way to know for sure, but I'm betting that this is at least one of the causal factors of my BC.  So for you, although it appears quite unlikely that the BRCA genetic mutation is in your family, this doesn't mean that you didn't inherit something from your mother that has led to your BC diagnosis. I think a lot of doctors are too narrow-minded when they talk about genetic causes of cancer and restrict the discussion to only the known genetic mutations.  There is so much more to it than that.     

As for your lumpectomy vs. mastectomy decision, if you know in your heart - and your gut - that you are not ready to have a mastectomy, then don't have one.  If you have a lumpectomy, you can always have a mastectomy later.   But after a mastectomy, there is no going back.  So it's not a decision that anyone should make unless they have no choice (my case) or they are absolutely certain that this is what they want to do. 

Jenna1961

Hi all,

I couldn't resist joining this thread.

It is so interesting to see how different things are more important to different people. I would always rather have local intervention, even radical, then systemic one. Tamoxifen - estrogen deprivation in general - seemed very scary to me. Ended up with Herceptin for a year anyway, but the side effects were more acceptable to me (more confident in my heart than brain, heh ...).

It is great though to have the options.

3monstmama

JennSmith58 said best what I was thinking:  if my doctor thought I didn't have cancer I wouldn't feel comfortable with him/her on my team.

I think seeing an oncologist should be a priority.  One conclusion I drew when I was going through the decision making process was that cancer treatment is, pardon me, ass backwards.  Surgeons know how to cut things, oncologists know cancer.   Yet too often we are all told we need to see the surgeon first and to see an oncologist AFTER we have had our surgery.  My first surgeon was saying mastectomy or partial mastectomy as preferred treatment.  That sounded so extreme to me so I went off to get more opinions like meeting an oncologist.  I found my meetings with the oncologist and the plastic surgeon helped me tremendously in figuring out what to do next.  In my case, post surgery and pathology and the like, my oncologist is now recommending that I take tamoxifen and see how I do on it.  She finds most of her patients do pretty well but --and this was really helpful to me--if I don't do well and can't take it, she thinks I should be okay anyway.

Beesie, interesting bit about dense breasts.  I have them too.

bonnie1jean

3monstmama:  I have thought exactly like you--we should probably first see the med. onc. and then the bs, especially since from what I've heard and read, the med. onc. is the one who is at the head of the rest of the team.  Yes, it really is ass backwards!

bookart

I, too had dense breasts.  Hmmm.

3monstmama

bonnie1jean,  when I got diagnoised I presumed I needed an oncologist and got a referral from a friend who is a doctor.  So I call the office and the first thing they ask is who is my surgeon. I was floored: how can I have a surgeon when I don't know what the options are?  But the scheduler was quite adament: no surgeon, no appointment.  I did manage to see the oncologist for a pure appointment pre-surgery but it was after I had the surgical options explained to me.  It still makes NO sense!!!!!!!!!!!!!!!!!!!!!!

MariannaLaFrance

Funny, I've thought the whole thing was ass-backwards as well. I never understood how they could be meeting "as a team" on my case, without all having seen me. Finally, after I've already seen my radiation oncologist and I've had my surgery, I will meet my oncologist for the first time. Bizarre, really.

And I have already decided not to take Tamoxifen, so I wonder what we'll even discuss at this point. I am sure I'll have to sign my life away because I am opting out of Tamox.

3monstmama

MariannaHB, don't be sure about the reaction of your doctors to not wanting the tamoxifen.  My onc said that if I had lower grade DCIS, it wouldn't have been a big deal if I didn't take it because of all the monitoring etc.  But I'm a 3 and I have OtherStuff going on so I have seen my future and it is Tamoxifen.................