44 and just diagnosed with DCIS

littlebee72

So, I knew it was coming. I've been getting mammograms since I was 30 due to the fact that my mom, grandma and great grandma all had breast cancer. I knew that one of these years my mammogram would show something, and this just happened to be "the year".

I was not shocked or upset, I was relatively calm when the doctor told me it was cancer. 1.8 cm, with low estrogen receptors and slow growing, a clinical Stage 1. No, what really got me was facing the fact that I was going to have to decide what to do. Lumpectomy? Mastectomy? Bilateral? I have no idea what I should do. I recently had an MRI and a bone scan, no results yet, and I have genetic testing for the BRCA gene scheduled for the 25th of July. My doctor says, "Wait for the genetic test results and then we can make a plan". Ugh, the waiting.

Part of me hopes the genetic testing is positive....it will make my decision very easy. The other part screams for it to be negative because I have a daughter and telling her that this may happen to her one day would break my heart.

My mother....she means well....tells me over and over that I don't need to take radical measures, that it is just a small lump, that SHE had a small lump and has been cancer free for 20 years with a lumpectomy and radiation. I try to tell her that her cancer and my cancer are not the same, that just because she has been cancer free does not mean that a few years down the road, I could be reliving this scenario if they find another lump in the same or the other breast.

There is that, and there is the chemo. God, it scares the living hell out of me. I am ok with losing my breasts.....I know they will not feel the same or look the same, but I am ok with that. I am ok with losing my hair....it will grow back. Its being sick, throwing up, being fatigued.......that scares me the most. Stupid, right? Here I am with a small little lump and a positive outlook and I am worried about being sick for a few months.

So, how did you decide what to do? How do I know if I am making the right decision? What if I choose wrong? The more I research and read, the more confused and unsure I am.

MTwoman

littlebee, so sorry you've had to join our club! Please take a deep breath. Now, a few things are confusing to me, so I want to clarify them first. You stated in the topic header you were diagnosed with DCIS, but then you state it's "clinical Stage 1". Those 2 things don't go together. If you were diagnosed with pure DCIS, then it is always Stage 0. It could be DCIS Grade 1, OR if they found an invasive component or large enough micro-invasion it could be Stage 1 (but then it would be more correct to say IDC with DCIS Stage 1 or DCIS-MI).

So, I am going to assume that you meant DCIS Stage 0, Grade 1 (please confirm this with either your pathology report or your provider). DCIS is catching bc as early as possible. It hasn't become invasive at that point, so pure DCIS is never found in the nodes (again, unless there is an area of undiscovered IDC) or distant parts of the body. The overall survival rate for pure DCIS is close to 100%. The treatments for pure DCIS are:

Surgery - LX VS MX (potentially followed by Plastic surgery - reconstruction options (there are a number of these))

Radiation - typically in conjunction with LX, although that is actually not always done these days. there is an oncotype test for DCIS that looks at the risks of rads measured against the benefits. Typically not done following mx, although there are some exceptions

Anti-hormonal - for receptor positive dcis, Tamoxifen or an AI is considered

I know others will come along soon to provide more information, but I just wanted to reach out and say welcome and I'm sorry you're here. Waiting for more test results is absolutely agonizing, but those results will help you make decisions, so they're important. Please use these boards to collect information and start your list of questions for potential providers. There are so many knowledgeable women here. A good start would be Beesie's thread on DCIS. There are also forums on surgery (why did you pick lx or mx), hormonals and rads.

LLP

I was just diagnosed as well two weeks ago. I have not decided as of today what I plan to do as I am unaware of all the possibilities. I have an appt Thursday with the radiologist and onocologist ~ I need more information to decide. I also plan to ask about a different type of radiation that I wasn't aware of.

Moderators

LLP-

It's always a good idea to have all the information before you start making decisions! it can be vert overwhelming. Write down any questions you have, so you don't forget to ask anything. And if you can, bring someone along, so nothing gets missed.

Please keep us posted, and welcome to the community!

The Mods

littlebee72

MTWoman,

My pathology report states Infiltrating Ductal and Ductal Carcinomas In-Situ, so I guess I have IDC with DCIS Stage I. I also tested positive for E-Cadherin, Estrogen and Progesterone receptors, but tested negative for Her2 (0). And thank you for all the information!

LLP,

The information out here is overwhelming. The more I read, the more confused I become as what to do, what not to do, what to question with my doctors, etc. My best advice is to take your time, ask question, write things down that you don't understand and ask your doctors. I literally call my doctor once a week to ask random questions. I used to feel bad for bothering him, but he reassured me that he is there to answer any and all questions, so don't be afraid to reach out.

anniejabam

So sorry to hear of your recent diagnosis. I, too was just diagnosed yesterday. I have DCIS confirmed and just had my MRI. It's all so overwhelming. I also have a strong family history of breast & ovarian cancer. I'm leaning towards double mx. Some of my family think it's extreme as well but, I think it's such a personal decision. Only that individual can make it. And honestly, I may change my mind 2 more times before I have all my results. Anyway, just wanted you to know you're not alone in just being thrown on this crazy ride...

littlebee72

anniejabam,

I have changed my mind about 100 times already and I was just diagnosed a few weeks ago. I just had my MRI and bone scan and will have my genetic test on the 25th.

What is you family history of cancer like? My mother, grandmother, and great grandmother had bc. My paternal GF had bowel cancer, and one of my fathers sisters had bc. Great uncle on my fathers side had liver and lung cancer, otherwise, that is all that we know of. I just wondered if that warranted a genetic test? Seems like everyone's family these days has some type of cancer......

If my test comes back positive, I am pretty sure the double will be my choice. If it comes back negative, I am at a loss as to what to do......

Annette47

Couple of things - first off, if you are diagnosed with both IDC and DCIS, then your diagnosis is IDC as that is what all of your treatment decisions will be based off of. The only relevance of the DCIS is how large a surgery is needed to clear it, so concentrate on having IDC, not DCIS.

Also, you mention being afraid of chemo. Chemo is not always warranted, even with IDC ... I’ve known plenty of people with IDC (including my mother) who were not given chemo. And if you do need chemo, you will need it regardless of which surgery you choose as chemo is given to treat any possible cancer that may have spread beyond the breast, while the surgery deals with the cancer in the breast, so chemo and surgery are two separate questions that don’t impact on each other.

Try to take it one breath at a time, one decision at a time, and gather all the information you can before making a decision. The vast majority of breast cancers grow relatively slowly, so there is no harm in taking a few weeks to decide. The only other thing I would throw out there is that if you get a lumpectomy and are still unhappy (perhaps you are worried about recurrence, etc), then you can go back for a mastectomy, but if you get a mastectomy and regret it later, there is no going back and redoing it.

YazMar74

Hi littlebee, hope you find all the answers you need, at the end of the day, its a personal choice with guidance from your doctors. I have BC family history and always said to myself - I will not go through what my mom went through and will immediately choose the bilateral mascetomy - told my husband that is my decision period. My genetic testing was negative even thought Mother, and her sister and aunt all had it. Well long story short - 18 months later after relaxing because my genetic was negative - I get dx with DCIs with microinvasion. After much research and talking to close friend who choose the double mx and meeting up with other people who had lx - I preferred right now to have just the lumpectomy - am small on top and was of course concerned what would be left - fast forward 2 months and 2 lx (yes had a re-excion to clear margins) - am happy with the decision. My breast look the same size - same shape. My breast surgeon specializes in breast conservation and I was suprised with the results. Now headed to radiation - for 21 rounds starting next week.

If I ever come accross this road again and the situations are different then I would probably choose differently. Let is be a decision that works best for YOU and your health and future. Best of luck dear.

piano

hi, I have almost same Dx as MTwomen. I am 44, diagnosed DCIS pure. Margin was clear. Just saw my surgeon for follow up. She said I have least threatening breast cancer and mastectomy is overtreating . She encouraged radiation and ordered oncotype. She also said if I choose to mastectomy then , nipple sparing surgery is a option for me which has been out there less than 10yrs. Not enough of data to say there is a possibility od cancer growing back of nipple.

My concern for radiation is uncertain future side effect such as heart disease, lung and bone near my Lt breast. Although percentage is low.

With everything I decide, there is small percentage of risk.

I walked into Dr office with thoughts of leanning toward mastectomy, but Dr discouraged me. So now I am even more confused , puzzled, and frustrated.

littlebee72

piano,

I feel the same way. When I heard cancer, I had made up in my mind that I was going to have the bilateral mastectomy. I don't want to have to worry every year if they are going to find another suspicious area, leading to a biopsy, waiting for results. I asked my surgeon if a bilateral was an option if my genetic testing comes back negative. He said yes, he sees a lot of women choosing this option lately. He said he understands and in the end, I have to be comfortable with the results. I am more confused than ever as to what to do at this point. What if I get the lumpectomy and it comes back? Do I just want to have the bilateral with reconstruction and be done with it? And he has already told me that he is pretty sure the oncologist is going to recommend chemo....do I want to go through that again if the cancer returns? So confused......

MTwoman

It is a difficult decision for many women. There is a really helpful thread where women talk about why they made their own choices, that may help you clarify any lingering questions for your providers and perhaps solidify your own preferences. It is here:

https://community.breastcancer.org/forum/68/topics/806074?page=8#idx_224

anniejabam

Littlebee72 - Sorry for the delay in response. I don't get much time on the computer with 3 littles I do have a fair amount of cancer in my family history. My grandmother had kidney cancer in her late 30's, then breast in her late 40's, then passed away in her 80's from pancreatic cancer - she was a fighter for sure though! My grandfather had brain, and my mother's sister had ovarian. My dad's father had throat cancer. But, yes it seems like everyone ends up eventually either having or passing away from cancer these days. I would think that you are qualified for genetic screening. I think all it takes is two family member with breast cancer, or maybe one BC and one ovarian? I'm not really sure. My mind was all over the place when they were explaining it to me. I think it's worth asking your doc. Do you know if having a bone scan is a common test given? I haven't heard anything about one.

Piano - I am interested in what you said about treating your DCIS with radiation. I wonder if that would be an option for me... mastectomy is starting to get scary the more I think about it. But I guess everything is still new and needs time to sink in.

BCWarrior17

Hi Littlebee72,

I am very sorry you were diagnosed with DCIS.  I was diagnosed with DCIS in mid-May (9 days before my 44th birthday) of this year and underwent surgery 2 weeks ago. I've learned that DCIS treatment is controversial, debatable and a very personal decision.  EVERY doctor will have their own philosophy on treating DCIS.  I felt confused like you.  Initially, I was just going to do a mastectomy with reconstruction in the affected breast (left) since I have very small ta-tas and didn't want 1.5 boobs.  However, the game changer was when my genetic test came back BRCA2 positive. At that point, my BC surgeon's recommendation changed to a bilateral mastectomy with ovary removal.  I consulted with a total of 4 cancer specialists - 2 BC surgeons and 2 GYN oncologists - all made the same recommendation for treatment.  I opted for the bilateral mastectomy with reconstruction and ovary removal (next spring) because I refuse to let cancer terrorize my life.  This was not an easy decision to make, but it was a very personal one for me and my family. And you are right - cancer is different for everyone.  Wishing you all the very best!

SusanaQ

These posts are right up my alley. I was diagnosed at age 38 with DCIS (2002). After 3 lumpectomies failed to get clear margins, I opted for a left mastectomy. I was given the option of Tamoxifen. I was denied genetic testing twice, in 2004 and 2011. I did not take the Tamoxifen. Last June 2016, I was diagnosed via mammogram and biopsy to have IDC and I knew immediately I wanted a right mastectomy. Prior to surgery I finally got the genetic testing done and have the BRCA 2 mutation. I am currently recovering from oophrectomy. In retrospect, I would would have opted for bilateral mastectomies back in 2002 and taken the tamoxifen. And I would have insisted on genetic testing and gotten a second opinion. Now my work is to do everything in my control to keep the beast from coming back.

littlebee72

BCWarrior17, I am having the genetic testing don on July 25th and at this point everything is still up in the air as to what I am going to do. It will be an easy decision if I test positive for the BRCA gene, but not so easy if I am negative. Lumpectomy? Mastectomy? I just don't know what the right thing would be. So I wait, wait, wait. I am told the testing results can take up to 4 weeks. Meanwhile, the thought of that lump growing is just making me so nervous.

SusanaQ, why were you denied genetic testing?

tannme

A few weeks ago, I had a 5.5cm lesion removed from my right breast and pathology found clear margins (though two are close), DCIS Grade 3, comedo necrosis, and no micro invasion. The surgeon said I could meet with the radiologist to see if s/he was comfortable with the two close margins, and if so, begin radiation or that he could go in and take more tissue, followed by some reconstruction and radiation. I then asked if a mastectomy sounded like an over-reaction, to which he replied, "Not at all... quite frankly, I thought, 'Wow, that's a lot of DCIS.'" I told him that while I don't have a medical background, I've read dozens of articles and technical reports and it seems as though even diligent monitoring of the healthy breast afterwards with mammograms and MRIs can miss new issues, and I was wondering if a bilateral mastectomy sounded crazy. Again, he said, "Not at all. In fact, the MRI finding was very faint for the [lesion]" that they did see. I consider myself lucky that (A) the first radiologist saw calcifications that he told me were incredibly small (yet the lesion spanned over 5cm) and (B) I pushed for the MRI and then sought a second opinion at a facility that could operate based on those findings. (My hometown facility is limited by their inability to do MRI bracketing (J-wire), which means the first surgeon would have been guessing at how much tissue to take beyond a perimeter surrounding the single wire they'd insert at the titanium maker left during my biopsy.)

I then had a face-to-face meeting with the surgeon and my husband to discuss my options (all the above had occurred over the phone). The doctor did not lead the meeting, so I feel his answers were not trying to steer me in any path. He did qualify his replies as him being "circumspect," so in other words, wary and unwilling to take risk. At one point, I asked about doing a unilateral mastectomy, and he responded, "There's no point. You would just do radiation." It's clear to me: Radiation is okay if I'm looking to conserve what I have. BMX is the most comprehensive in terms of limiting future issues. Now, recurrence in other parts of the body is something we all face, regardless of lumpectomy/radiation/mastectomy. He told me, however, that in 35 years, he's had one such recurrence issue. He also explained how one woman had had recurrence in a lymph node, which baffled the pathologist since the breast tissue margin had been cleared. He went on to explain that that's why he injects dye in the beginning of surgery to determine where the breast tissue actually ends, because it's not exactly in the same place with each woman, and that he'd make his final cut above that place, taking the first lymph node if it fell within the dye zone. (Not verbatim, but that was the gist.)

I haven't gotten the final analysis of hormone receptors or genetic testing. I feel as though they don't really matter, because removing the tissue seems to be the "logical" thing to do regardless since it'll be much harder for cells to go whacky if they aren't there. (If I don't have any of the 9 BC-related genes, that doesn't mean my daughter is necessarily clear because her father could have passed those genes to her.) I am very worried about making such a drastic, irrevocable change. I know that not all bits of cells can be removed, either, and while growths on top of implants may show up, what about behind the implants, next to the chest wall? Also, while I'd convinced myself that I would opt for BMX if I ever had an issue (I watched a friend go through five years of BC hell), it's proven exceptionally hard to commit to doing so because I'd never realized that one loses all sensation! For several years, I've been dismayed by the effects of gravity and nursing three children, describing my breasts as resembling worn socks. When I lose weight, the stretch marks formed in my teens become depressed lines in my sagging skin. In fact, I'm 45 and was planning to pursue a Mommy Makeover by 50, assuming I was one of the 7 out of 8 women who does NOT get breast cancer.

I meet with a plastic surgeon in less than two weeks. He'd insert implants after the general surgeon removes breast tissue since I'm currently eligible for a nipple and skin sparing mastectomy (BNSM). This fact, that I can save my existing breast skin and nipples (if there's no subsequent nipple necrosis), is one reason I'm leaning toward BMX now. In the future, if a new or local recurrence occurs, I may not have the option to spare any skin and then reconstruction becomes a whole different ball game. I'm sick, though, walking around with some degree of normalcy until my true circumstances hit me out of the blue. My three concerns are: being one who never recovers any sensation, complications and/or dissatisfaction with the surgery, and feeling numb on a large portion of my body to the degree that it's actually distracting or uncomfortable. I can't imagine such a large area being completely numb. I'm guessing that the feeling becomes something one doesn't constantly notice but am terrified that I'd be left with some odd sensation akin to that after having Novocain injected into my mouth.

Please, if you've had a BMX, speak to these three issues.

SummerAngel

tannme, I understand your fears. I didn't have the option of nipple-sparing, but from what I've read most women lose sensation in their nipples as well. I have regained sensation in some areas, but the area at the top of my reconstructed breasts, where the nipples were, is pretty numb. The numb feeling is NOT like Novocain, though, at least for me. I can feel the sensation of having "breasts", I'm not sure how to describe it. It feels like part of my body. I think this is probably because the muscle tissue underneath still has its sensation, and there is some type of sensation left in the skin because I could feel the nipple tattoos I later got. (It didn't hurt a lot, but I could feel a sting.) The area was a bit distracting at first, I admit, because it's just "different" now. However, after a short while I really didn't notice it. The only thing I really miss now is the nipple sensation. That's a different level of sensation and it is, of course, totally gone.

tannme

SummerAngel, thank you for replying with your experience. It makes sense to me that you feel the sensation of having breasts, which is what I was wondering since the weight of reconstruction (implants/fat grafting) sits on a person's underlying muscles. I'm also glad to hear the numbness isn't like Novocain. I am sad knowing that nipple sensation will be gone even if the surgery is a "success" and they are preserved, and I try to take comfort that at least we live in this day and age and have treatment options. Even so, it stinks. I'm grateful to hear your experience and appreciate your reply. I'm also heartened to think that it'll eventually get better, even if different. I don't want to wish my life away but am hating this waiting period and thinking that there's still time to change my mind but realizing that for the long run, I shouldn't.

littlebee72

So, I have FINALLY completed all of my tests since my cancer diagnosis on June 28th (MRI, bone scan, and lastly, the genetic testing - which took 3 weeks to even get an appointment, and another 2 weeks to get the results). I have an appointment August 9th to go over the genetic results and then an appointment August 10th with my breast surgeon to decide on an option. I am anxious to have a plan and get things rolling so I can be done. I still have no ideas as to what to do.....Lumpectomy, mastectomy, bilateral......I just don't know at this point and hoping that the test results will guide me in making a decision.

I am telling my children tonight and find myself nervous, although I know I am going to be fine and I will beat this. I just remember the feeling when my mother told me she had cancer....it was like the world came crashing down on me and I don't want my kids to feel that way and be scared. Wish me luck!