Am I doing the right thing?

Susan266

I was diagnosed with dcis, grade 2 in early July. Two locations. Lcis diagnosed 8 years ago. 3 papilomas removed and ahd removed last year. BRCA negative. 2 surgeons said for clean margins I would have to have a third of my breast removed which cosmetically could not be repaired. Recommendation was mastectomy and hopefully that will be all. Left breast just had ADH and papilloma removed with Lcis diagnosis in july as well. I am expressing something out of my left breast. Docs say smart thing is to have a bilateral mastectomy. Some of my respected friends haven't said it but intimate that i dont really have cancer and I am going overboard. I am scheduled for bilateral masectomy in August. I just don't know what to do. Am I overreacting? Do I sit back and wait? Do I Go through with it? What if the dcis never becomes invasive? There is so much info out there. Screening has gotten so sensitive everything is picked up. What is the right thing to do?

gumshoe

Hi Susan,



I feel for you -- it's a very tough choice! Unfortunately it's one that only you can make. I can't tell you what the right thing to do is, but I would suggest searching for posts by a member named "Beesie". Her information helped me a great deal.



Best of luck to you

Linda1966

Im sorry Susan, youve had a horrible time of it these last years.

 I think if I was you Id get a second opinion and then work out what you can live with and go from there. Only you can decide what treatment or surgery will make you feel comfortable. DCIS is indeed non invasive, yet it is malignant and as you say it may or maynot become invasive in the future.

For me personally, my age would play a significant role in my decision on whether to proceed with the surgery or not. Without wanting to be ageist and with the situation as youve described it above, Under 55 I personally would chose the bilat masectomy, for peace of mind and in an attempt to prevent invasive cancer, chemo, rads and never ending mammos and us's for the rest of my life.  55-70 would be my gray area where I would really have to weigh up the trauma to my mind and body versus the anxiety if I chose not to have surgery. Over 70 Id probably not do anything except monitor the breasts and have another lumpectomy if its appropriate. The gray area is dodgy for me and that is where it would really depend on a second opinion from a respected Breast Surgeon. 

 I was initially dx with dcis grade 3 when I was 42. With no prior knowledge of Breast Cancer, soon as I was told I just wanted it out of me asap. Even if someone had told me that DCIS "wasnt really cancer" I would have ignored them and had the masectomy anyway because the very thought of it being in my body for longer would have driven me insane. In my case its a very good thing I did have the surgery as they found IDC and micro mets in a lymph node as well, so my masectomy for DCIS has probably saved my life.

 Please understand Im not wanting to encourage you in either direction as this is a decision you have to make for yourself, based on how you can cope with the consequences of whichever decision you make and also I guess the impact on your family and your lifestyle. Im only saying what would impact on my decision if I was in your shoes, but what is right for me, isnt necessarily right for you. I have no partner or children to "live" for and my decisions about my health only impact on me and to an extent my mother and sister.

Im so sorry your having to deal with all of this mate, BC is no fun at any age and I hope you can find all the support you need from these forums. I know I have since I found the site last year.

LAstar

You really do have cancer! Tell your friends that 'c' stands for 'carcinoma.'



You have to do what you can live with. As you get more information, that decision will rise to the surface. I didn't want it but I ended up with bmx, and I do feel a sense of peace about my long-term risk. See the post by beesie about dcis for the lay-person for a good overview of the available research. Best wishes in your decisions & treatment!

Susan266

Thanks for your thoughtful responses.  There is so much to think about.  I did get a second opinion already from a respected breast surgeon in NYC where I live who concurred with my breast surgeon on the bmx.  The "smart" thing I am told is to deal with the issue head-on, full steam ahead.   I am 49 years old with an 11 and 14 year old.  Whenever I start to think about the bmx I feel anxiety.  But then, I think about my kids.  I question my decisions.  And then I think of them.  I note my vanity. But again, I think of them.  My self doubt I guess is my way of reflecting on my choices.  I should be grateful that I have choices, do the smart thing and move on with my life, for myself, for my husband and for my kids.

Dakota212

Susan266

I am so at a loss with this decision also. I also have two kids. Today I am thinking bmx if I can. Correct me please if I am wrong. With bmx, no lymphnode involvement, no radiation, no chemo, and no tamoxifen???

Dakota212

Linda196

Thanks for sharing. It was very helpful.

Susan266

Linda, based upon recommendations from commenters, I read the DCIS posts from Beesie.  The posts are indeed very helpful and discuss the treatment options.  You however have IDC.  I am sure there is an IDC post that discusses treatment options for you.  I am still in the learning stage myself.  My plan is to have bmx with diep flap reconstruction.  Surgery is scheduled for 8/22.  I have an entire month to doubt myself, beat myself up and question my ability to think clearly.    

cinnamonsmiles

Yes you have cancer!!!

I was diagnosed with DCIS in December 2010,when I was 42. When I saw the picture the breast surgeon drew of my milk ducts and they were riddled with DCIS and ADH and no clean margins after the lumpectomy, and she explained my treatment choices, I knew right away I wanted that breast removed. It took a few things to happen to remove the other. One, I couldn't stand the rude plastic surgeon that was in my network (other ps was 45 minutes away and too far for me for all the surgeries, appts) and two, in my pre-mastectomy MRI, they found a spot on the  other breast. I didn't want to go through a biopsy, lumpectomy and all that, so I decided on a bilateral mastectomy. Turns out the other breast wasn't cancer, but a benign tumor  whose only treatment is surgery anyway.

 Look at the information given to  you about cancer by your doctors, and the breast cancer informational sections on here and the American Cancer Society Website. They have wonderful information about DCIS. There is a cell progression from normal ranging to cancerous. I hope you have found this information. 

I saw an ob-gyn last summer for the first time and she informed me that I didn't have cancer, I had pre-cancer. I told her the progression and that it WAS IN FACT CANCER. and that if that was her view about my cancer, she couldn't be my doctor and she was fired and I left the room.

It certainly can be frustrating when people say DCIS is not cancer. I think the worst is when women on breastcancer.org and the American Cancer society breast cancer discussion boards say that we don't know what we are talking about that DCIS is NOT cancer just because they say so.

I really don't pay much attention to percentages and talk about whether DCIS will become invasive because I don't know which catergory I would fall into..those that stay DCIS or those that turn invasive. But others feel safe with that information. It is a matter of choice of thinking that is individual. My thoughts and decisions about DCIS may not be the same as others, but I respect both (except people who think DCIS is not cancer). 

I think deciding on treatments can be so hard for some of us. DON'T believe others that you are over reacting. You have CANCER. You have the right to every emotion you are going through. 

Arm yourself with information and hopefully the decision about your treatment will come to you...I wish you the best...Keep posting and letting us know how you are doing! 

Susan266

Thank you for your post Cinnamonsmiles.  It is very reassuring to know that there are people out there who truly understand what I am going through. 

learnin

From your story, I think a BMX is not overtreating. You have two solid opinions recommending that. If you don't, and get more advanced disease later, you will regret not doing it.



Of course you have anxiety - that is normal as you make big decisions and prepare emotionally for a huge change in your body. Honor those emotions, and give yourself permission to feel them. But I think you will feel better as you move from contemplation into action.



As for your friends - they probably are processing their own emotions. If they are good friends, they will support you even if they don't completely understand.

crystalphm

I was in your shoes. I think one thing we don't consider while waiting for a mastectomy is no one really knows what is in your breast until the pathology (after mastectomy). Many path reports come back and the cancer did indeed become invasive. No one really knows at what point DCIS turns invasive.

I don't regret my mastectomy, I *needed* the cancer gone. And it is cancer, the C stands for carcinoma. It is just not *yet* invasive.

 but my story continues. 18 months after my breast was removed, 3 things showed up on my MRI. I decided to have a second mastectomy, and I can't believe how freeing it all was. No more breast cancer. I never realized I felt my own remaining breast was a time bomb. The 3 things did turn out to be precancerous conditions, so I am glad to have that behind me.

We all deal with it differently.

I wish you the very best!

LaurenM730

Hi Susan.  We have a lot in common.  I was diagnosed with DCIS, stage 3.  Also had LCIS in both breasts.  I have 2 kids.  Was also faced with the decision of a BMX, or let it ride situation.  I personally, had no other choice but to do the BMX.  Its really my kids that made the choice so easy.  I know I need to be around for them, and I wasn't about to let this cancer (which is what DCIS is - don't let anyone tell you different) get me.

I am more than happy to talk to you about this if you want an opinion from someone in very similar shoes.  Feel free to PM me and we can chat or just PM.  Whatever you prefer. 

Wishing you all the best!

Alicethecat

Hello

After my mastectomy, I discovered that I had DCIS grade 3 and IDC grade 3.

Both the calcifications and the IDC shared the same features - apocrine, micropapillary, comedo pattern, HER2+.

If I had known about the DCIS grade 3 first, I probably would have assumed that it would never become cancerous because I am an optimist.

Now I know a little bit more about breast cancer re grade 3 and HER2+, I would have had the breast off then.

I guess it may be a little different for you as your calcifications are grade 2.

Not everyone is the same, as Bessie's post shows, so good luck with your decision.

Best wishes

Alice

Beesie

Susan, I probably shouldn't do this but I'm trying to read between the lines of your posts. The sense I'm getting is that you want to have the BMX and you believe that's the best approach. But you are questioning whether it's the right thing to do because of comments from your friends and suggestions that DCIS 'isn't really cancer'.

Here's what I've said over the years to lots of other women in your position: It's your body, it's your decision and nobody but you knows what's right for you.  Assess the pros and cons of both approaches (the pros and cons for you, not for anyone else - we each have our own list) and then do what you believe to be right for you.  Ignore all the friends and family (and even the people here) who offer opinions that try to influence or direct you. Nobody is in your shoes and they certainly aren't in your mind. 

As for whether a BMX is over-reacting, I'll be honest here. I had no choice but to have a MX but I looked for every way possible to avoid it.  I never considered a BMX.  But if I had DCIS in one breast, ADH in the other, LCIS in both, a bunch of papillomas in both breasts and something being expressed out of one breast, I wouldn't hesitate and I'd go for the BMX. That doesn't mean that a BMX is right for you - only you can know that - but this is my way of saying that in thinking about a BMX, you are absolutely not over-reacting!

Good luck to you, whatever you decide.  And if your friends keep on your case or say something to make you question your decision or feel bad, find some polite - or not so polite - words to tell them where to go.  

Dakota, you said: "Correct me please if I am wrong. With bmx, no lymphnode involvement, no radiation, no chemo, and no tamoxifen???"  NO, that's not necessarily the case.

As I mentioned in our exchange of posts yesterday, after a BMX radiation might still be required if the surgical margins are too narrow, even if you are node negative.  That doesn't happen often but it can happen.

As for chemo, having a MX or BMX instead of a lumpectomy won't make any difference at all in whether or not you need chemo. If it's determined that you need chemo, it will be recommended to you, whether you have a lumpectomy or a MX or a BMX. So having a BMX will not get you out of chemo, if it's determined that you should have chemo.  

As for Tamoxifen, because you have invasive cancer (and not DCIS), it's quite likely that Tamoxifen will be recommended to you even if you have a BMX.  Depending on the specifics of your diagnosis, the benefit might be quite large or it could be quite small; this is something to discuss with an oncologist after your surgery and once everything is known about the pathology and your diagnosis. 

Hope that helps. 

suzieq60

Susan - I don't quite understand what you wrote above: "You however have IDC.  I am sure there is an IDC post that discusses treatment options for you."

Linda in the above post did have DCIS at diagnosis. It was only after surgery that the invasive IDC was found - the exact same thing could happen to you as it has to many others.

Susan266

Beesie, your well informed words are well appreciated. I will continue to learn more and when my mind and heart ( and vanity) are all on the same page I will do what is right for me, my kids and my family. I know what I am going to do. I am looking for peace in my decision. That I will only find within.

akinto

Such wise, thoughtful and beautiful words and women.

I am proud to be among you.

GreenMonkey

Hi Susan, 

I was initially diagnosed with DCIS grade 3 in right breast only. Went for a second opinion at Memorial Sloan Kettering, brought my slides and was told I needed another mammogram on my left. After than, it was determined I needed another biopsy, this time in the left.  At this point I had a dear friend who told me flat out that Sloan makes things up so that they can get you to have procedures that they charge double for then "our" in town hospital. I wanted to slap her. Instead I insisted we take a serious friend time out.  The point of that story is... listen to your gut, don't listen to your friends. 

I knew right away I wanted a BMX so when my left breast biopsy came back with ADH (pre DCIS) I was relieved in a weird way because I could now justify a BMX to, at the very least, my husband. 

My first breast surgeon at memorial sloan kettering was completely against me having a BMX and she was dismissive of my view so I dismissed her.

My final pathology report showed even more. I do not for one second regret my decision to have a BMX... but thats because it was MY decision.

Beesie has a wealth of information. In closing all I will add is that I after 4 mammograms, 2 biopsy's and 1 MRI, NONE of them picked up my LCIS or my pre LCIS or my pre DCIS in my left breast. I didn't learn that until my final, post BMX, pathology report.   so... read, listen, learn, trust your gut.  

Best, Shannon 

Blessings2011

Hi, Susan....

So sorry you are in the position of making this very tough decision. It's even harder when well-meaning friends cause you to second-guess your commitment to that decision.

My mom was dx'd with BC at 61. She had a radical mastectomy, no reconstruction, no treatment, and passed 26 years later from unrelated causes, with no recurrence of cancer. Of course, they didn't know much in those days, so I really don't know exactly what she had.

I'd always had large (38DDD), droopy, heavy, fibrocystic, painful breasts. At the age of 40 I started having annual mammograms. I kept asking my PCP for ultrasounds, as I didn't believe the mammos could pick up everything. He told me that USs weren't screening tools.

Fast forward to last September, when I noticed two spots of blood on my nightgown, coming from my nipple. I saw the PCP the next day, and THAT sure got his attention!

I was meeting with a breast surgeon two days later. She reassured me that it was probably a papilloma, a benign growth in the milk duct, that would have to come out. But in the meantime, she'd refer me for more diagnostic work "just to be sure".

Seven procedures later, they found DCIS in two separate areas, along with two microinvasions in my left breast. The right breast showed nothing obvious, but my Radiologist - who I LOVED - was uncomfortable saying it was clear. She wanted me to have an MRI.

The BS offered me a lumpectomy with radiation. But she cautioned me that she would have to take such a large wedge of tissue, it might deform the breast, and I might not be happy with the results. She didn't think I would need chemo, but that would all depend on the Sentinel Node biopsy, and the final pathology report.

When I say microinvasions of invasive cancer, I mean TINY. One spot was one and a half mm (the size of half a grain of rice) and the other was half a mm - the size of a grain of salt.

I thought long and hard about my choices. Obviously, if I had a UMX (mastectomy on one side) I'd need a reduction and a lift on the other. I really doubted they could match the girls up.

So in my mind, the choice was easy - I opted for a bilateral mastectomy with immediate reconsctruction (placement of tissue expanders).

I did tons of research, read a gazillion posts here, and prayed a lot. I felt convicted that this was the right decision for me. The radiologist was SO relieved!!!

I had my surgery on December 5th. I was 61 - the same age my mom was when she had her surgery. All the margins were clear, and there was no lymph node involvement. AND - in the final path report there was no evidence of the IDC! (They say it must have all gotten removed in the core needle biopsy. I prefer to believe it was divine intervention.) So for me, no chemo, no rads, but I will need 5 years of Anastrozole because the cancer was estrogen positive.

And - it turns out no cancer was found in the right breast, so it was a prophylactic MX. But my Radiologist really felt like it was just a matter of time til something developed enough to be detected on mammography or US.

I finished my fills in March. But I postponed my exchange surgery (to permanent implants) until I could lose weight.

I see the Plastic Surgeon tomorrow to schedule the exchange.

When I was brand new here, one Sister wrote "I want this whole breast cancer experience to be a bump in the road in my rear-view mirror." I'm almost there!

I have never regretted for one minute the decision I made.

May you experience the same peace of mind!

GreenMonkey

Blessing I had not read your story before.  Let us know how your meeting went today with your PS. and tell me, how is the weight loss going? I'm so discouraged by the weight I've gained. I now want my body in shape to match my noobs.

I have no idea if I'm PR + or -, nor did they do the HER2, I'm told because all of my cancer was contained in the ducts and lobes. I never saw an oncologist. that bothers me. I'm pre menopausal with no family history of breast cancer. It was never suggested I take hormonal therapy. Are you on arimidex because of the microinvasion of invasive cancer? 

Blessings2011

Hi, GreenMonkey!!!

The weight loss continues to go well. My oncologist has several of her patients in the Kaiser Weight Management Program (Optifast), because she believes so strongly in the benefits of weight loss and exercise on cancer.

It's an incredibly strict program in times of discipline (four months of mostly liquid meal replacements, then three months of small additions of regular food), time (lab work, physicians meetings, weigh-in and support group every week for the first 30 weeks, then weekly follow-up for a YEAR after that), and money ($4,300) which includes everything. And - it's open to non-Kaiser members. You must need to lose at least 40 pounds, and they evaluate you very carefully to make sure you will benefit from the program.

I'm down 50 pounds with another 10 to go. I do water aerobics, ride my bike, and power walk. I haven't felt this good in 20 years. The breast cancer diagnosis saved my life in SO many ways...I would never have made this commitment to getting healthy otherwise. I was a totally committed couch potato.

Yes, I did have more testing done because of the microinvasion of invasive cancer. That showed the cancer was 100% ER+, and that I would benefit from taking 5 years of Arimidex. What I did not have done was the BRCA test (no other family hx) or the Oncotype test, probably because the IDC was so tiny and there was no lymph node involvement.

p.s. Love your blog!

sandy1218

Not to scrae you but it can happen. I had DCIS in 1997 and had a lumpectomy.  It returned in (same breast) in March of 2012 except there was one invasive tissue.  Having had radiation the first time I had to go the masectomy route.  It was fine and no real problems developed.  I have had reconstruction and am on Aimidex and doing well

Susan266

I have learned that the doctors don't really know what they are dealing with until they take out the tissue.  I am optimistic that there is no microinvasion and have to stay optimistic.  I have 3 weeks to keep repeating this mantra.  In the meantime, I have scheduled some days in Cape Cod with my daughter, a long weekend alone with my hubby on the Jersey Shore and a fishing trip with my son (even though fishing is not my most favorite thing).  I have learned who my friends are and they have been constant company.  Everything about this cancer is a learning experience. 

netty46

I have read most of these post. 3cm tumors, 6 cm Masectomy and that's it no chemo?



What happens to cells that got out? I have never seen so mNy Masectomy stories with no chemo. You never heard of this 10 yrs back. 6cm ttumor is stage 3 and that requires chemo as well as a grade 3 tumor. Why are they not giving you ladies chemo?

Beesie

netty, 

Most of the women writing here have DCIS, which is a pre-invasive cancer. The cancer cells are confined to the milk ducts of the breast and they do not have the ability to get out.

DCIS, whatever the size of the tumor, is always Stage 0.  Chemo is never warranted for DCIS.  

In looking at your previous posts, I notice that you had chemo with your initial diagnosis.  While I don't know what your diagnosis was, the fact that you had chemo means that you had invasive cancer, which is a very different situation than what is being discussed in most of the posts here. 

I think you may not have realized that you wandered into the DCIS Forum. The way this board is set up, that happens a lot!   

mrenee68

I to am in the process of deciding how far to go with a mastectomy. My BS has recommended a mastectomy on my left, but my MRI showed a cluster on the right side so I just had a biopsy and I' m waiting for results. This is the hardest decision I have ever had to make, my emotions keep getting in the way of my ability to make a logical choice.

Beesie

mrenee, I was in the same position as you.  I had too much DCIS in too small a breast, so on that side I had to have the mastectomy.  But before my MX surgery I had another biopsy done on a calcification cluster that was found in my other breast.  That biopsy turned out to be benign. I decided then to have a single MX only.  That was over 6 1/2 years ago and so far, so good.  

I know that I might be diagnosed again with BC in my remaining breast, and I know that I'm actually high risk to be diagnosed again.  But a 20% or 25% risk of BC still means that I have a 75% or 80% chance of never having to deal with BC again.  I just couldn't see removing a healthy breast if there was a 75%+ chance that this breast would never get BC. I also know that I'm good at dealing with risk.  I've had breast problems all my life - I had my first lump and first surgery when I was 16 and if you include fine needle aspirations, I've had more than a dozen biopsies. I'm used to callbacks and biopsies and they don't scare me. I know from my own experience that most of the time the biopsy result isn't breast cancer.  So I can easily live with the risk without fear.

If you are someone who would have a hard time living with the possibility of another diagnosis, then a bilateral mastectomy might be the way to go, even if your biopsy is benign. Or you could go with a single MX and put the decison on hold.  If you are having trouble deciding, there's no reason why you would need to do both breasts now.  You could give it some time and see how you feel in a year or two, after you've lived with a single MX for a while.  Some women react well to having the MX, others find it much more difficult that than they expected, either physically or emotionally.  Some experience side effects (phantom pains or itching, for example) and others don't.  Some are happy to have one natural breast, with natural movement and feelings; others find it awkward to have a mismatched set (or to be flat on just one side, if they don't do reconstruction).  So waiting a while to see if you want to have a prophylactic mastectomy on the 'healthy' side (assuming your biopsy is benign) is another option and would take the pressure off needing to make this decision now. 

Just something more to think about!