Help/advice - DCIS mastectomy with unclear margins

lek0715 · October 2016

Hi everyone,

First I want to sincerely thank everyone here who has shared their stories, given advice and support, and shared information to help educate. I have poured over so many threads since being diagnosed this past June. It has helped to know I'm not alone. Thank you!

Next I'll say that this is really hard for me to write and I've avoided posting here even though I should have months ago. My Dad died right before I was diagnosed with breast cancer. My Mom died from breast cancer in 2005. The past six months have been awful. But I need to face what's going on with my cancer and I could really use some help.

I'm an American living in Sweden (my husband is Swedish), so my healthcare situation is a bit different than those of you in America. I'll do my best to explain things, but some things I don't know due to the limitations of how they do things here, which in some cases is very different.

After several breast MRIs and two biopsies, I had diagnostic surgery on my left breast in April. It showed extensive DCIS so in June I had mastectomy of the left breast and two lymph nodes removed. The lymph nodes were clear, but the DCIS was 7cm and I had unlcear margins of 0.1mm. The DCIS was ER positive. Radiation was recommended by the oncology doctor due to the unlcear margins. The team of radiation doctors recommended against radiation because it is on my left side and the hospital is not set up for heart sparing treatment. I went back to the breast surgeon to ask, well what do I do now? She suggested hormone therapy, but that it needed to be approved by the oncology doctor. The oncology doctor denied hormone therapy. Again I asked the breast surgeon, well what do I do now? She said their reasoning was that there's no way to know whether the cancer will return or if it will become invasive. So, I should go live my life and get my checks every year for the next five years. If I feel anything, call to let her know. I wasn't happy with that, so I asked to meet with the oncology doctor to ask questions, but was denied an appointment because the hormone therapy decision was not going to change.

I'm not feeling good about this because from what I understand, the risk factors of recurrence are being diagnosed at a young age (I'm 44 years old) and unlcear margins (which is the case for me). I feel hormone therapy is something I should be doing, but definitely I shouldn't be told it's radiation or nothing, if radiation poses a very clear risk to my heart. So my only option now is to complain to the patient's rights advocate. Before I do that, I'd really appreciate any research that supports my position that I'm in a high risk group for recurrence and that hormone therapy would be an appropriate treatment for me. Can anyone share any articles or research they have on these?

Or please tell me if my gut instinct is wrong here! I'm coming from my experience with my Mom. She was diagnosed with invasive cancer at 49 years old, had a radical mastectomy, chemo, radiation and then was free of disease for 15 years before it returned and metastasized to her bones. She fought bravely for two years, then died. I took care of her at the end, it was heartbreaking to see how much she suffered. I am terrified I'm doomed to that fate as well if I do nothing. Plus I lost my Dad suddenly to bladder cancer right before I was diagnosed. I couldn't even attend his funeral in the US because I was recovering from surgery. It's been awful. Maybe I'm just too scared and not thinking clearly? Please any advice would be appreciated.

Finding other doctors or second opinions isn't an option because that's not how it's done here, it's one health system for everyone. I was asked if I was going to the US for surgery and treatment but that's impossible, I've lived here in Sweden for 10 years and I don't have US health insurance.

If you have made it to the end of this, thank you!! I'm sorry this is so long.I hope I made sense. I feel like I'm in a complicated situation and I'm very frustrated. Any help or advice would be appreciated from the bottom of my heart!

Moderators · October 2016

Hi Lek-

We want to welcome you to our community, and hope you find the advice and support you need as you deal with your diagnosis.

Your situation sounds very frustrating indeed. We have some information on our main site that you might find helpful/useful in navigating your doctor treatment situation. This will give you some basic info on DCIS and recurrence rates: http://www.breastcancer.org/symptoms/types/dcis. This article links to an interesting study on recurrence after DCIS w/o radiation treatment: http://www.breastcancer.org/research-news/risk-for.... And finally, something you might want to address with your oncologist is the possibility of having an Oncotype test done. It's a fairly new test, but can help predict the risk of recurrence for women who've been diagnosed with DCIS: http://www.breastcancer.org/research-news/oncotype.... Now, we're not sure if this is a test that is available to you in Sweden, but it may be worth discussing with your medical team.

We wish you luck, and hope you're able to find a solution to your treatment plan! Please keep us posted!

The Mods

TB90 · October 2016

Hi Lek: I still scout these forums just for this reason. To assist someone who I may be able to benefit from my experiences. I had 5 cm of DCIS and small breasts. After my mx, I had a small spot of positive margin, but any size is too big. My breast surgeon felt I would be fine with close monitoring, but I researched the internet extensively. Risk of recurrence went from 1% to 13%. And 50% chance that a recurrence could be invasive. Plus how do they monitor the mx side (I did not have reconstruction) until a lump could be palpitated and then it would most certainly be invasive. Radiation reduced recurrence by 50%. Studies supported both positions equally and the RO left it up to me to decide. Then I agonized over the fact that if I did not have radiation now, I would have that tool for a recurrence.. But I wanted to avoid a recurrence at all costs. It came down to my personality and how well I handle risk. This was one of the most difficult decisions of my life and I was so angry that no one could tell me what to do. I decided I could not stand the increased risk and went for radiation, also on the left side. Everything I read stated that risk to the heart was minimal now and my RO was not concerned. In Canada, the RO is not promoting radiation as they benefit zero from another patient. In fact, they are trying to get rid of wait lists and therefore are definitely not recruiting patients. The equipment here may be exceptional but I would hope that most advanced countries offer the same. Three years later I have absolutely no side effects and am in the best physical shape of my life. I worked extremely hard at losing weight and becoming physically fit. I am 57 and have ideal bp, cholesterol and bmi to ensure that I am doing everything I can do to offset any risk factors from radiation. I feel great and forget that I ever had radiation (never forget about the breast cancer though). I may be minimizing the radiation, but there is nothing to ever remind me that it happened. Please research the possibility of having radiation at other facilities, the real risk factors and remember that your odds are still great either way. You sound like me and hate to leave any stone unturned. Make a decision that you can live with forever as the chances are overwhelming that you will live a very, very long time!

TB90 · October 2016

Another thing to research is whether or not you actually have positive or unclear margins. Most research now states that any margin is accepted as a negative margin. You may have a lot less to worry about than you realize. I do not understand their reasoning against hormonal therapy, but please look at radiation therapy . . . at least give it a peek.

LAstar · October 2016

I'm sorry that you have had so much to deal with in such a short time. I don't think any of us would think clearly in your circumstances. Do you have a therapist there? I can't imagine trying to work through this on my own -- this is heavy stuff. Sending you a big hug.

Which margin was small? For my MX, the posterior margin (skin) was <1mm. I was very concerned about this, but my BS cautioned me that MX margins are very different from LX margins. When I went back to have a reconstruction revision, I had them take more of the skin layer around where the small margin was found. Nothing was found.

lek0715 · October 2016

Thank you all for the replies! Sorry I forgot to include my name, I'm Laura

Mods – Thank you for the well wishes and for linking the articles. They don't offer the Oncotype test here, that was one of my first questions. So I'm kinda feeling my way in the dark trying to determine what my risk of recurrence is through my own research. I have no real idea though and that's also frustrating.

Those articles reminded me of another question I have, it seems there are a lot of studies and research on DCIS with lumpectomy. I've had a mastectomy, so would the lumpectomy findings also apply to me in some way or do I stick to only research that involves DCIS with mastectomy? This is where I get confused.

TB90 – Thank you for checking around here to help! Our situations sound similar, I really appreciate you sharing your story. I'm agonizing over this too! I'm sorry to hear you had the same struggle. While I was waiting for my first appointment with the RO, I thoroughly looked into the benefits of radiation treatment. I found a lot of info that convinced me of the benefits, but then stumbled upon the possible big risk to my heart. It was going to be my first question to the RO, but she brought it up first as soon as we met. The RO team concluded I was in the biggest risk group for heart damage because of my young age (44 yrs) and that my unusual scar path (my mastectomy had to also remove the two scars from my diagnostic surgery, so much of the scar lands very low closer to the heart). The research study she discussed found that younger patients in my age range were more likely to develop heart problems 10 years after radiation treatment. She was very concerned and for me, it solidified in my mind that radiation would be too big of a risk for me. When hormone therapy was brought up by the breast surgeon as a possible other option, that's when I let the RO know I was following their recommendation and declining treatment. I had no idea at the time that I'd be declined for hormone therapy. The hospital will be upgrading their equipment for heart sparing treatment, but that won't be done for another year or so. My mastectomy was this past June, I don't even know if they'd consider starting radiation after so much time has passed? What does echo in my head is exactly what you wrote, that I need to make a decision I can live with. I have no idea what I can live with! Do I risk my heart? Do I risk recurrence? I've agonized over that for so long and discussed it over and over with my sister and husband. I thought hormone therapy was going to be what was right, what I could live with. But then it wasn't an option. It's all very hard.

LAstar – Thank you for the hugs! I know I'm complaining and painting a negative picture of the healthcare system here, but there is so much that has been wonderful. One of the best things is that when you are diagnosed with breast cancer, you automatically and immediately get an appointment time with the breast cancer therapist. My Dad died the week before my diagnostic surgery and I had never been under anesthesia before, I was scared out of my mind and a huge mess! The therapist got me in the day before my surgery and helped me through everything, then made sure I was ok the day after. I saw her regularly from April until recently. I'm currently looking for a new therapist to get help more regularly over a longer period of time. The other one was great, but it's more for the active patients at the hospital. I thought I was ok and didn't need to find a new one to continue, but I had a total breakdown a few nights ago, I didn't realize how much I was pushing down and pushing off my grief, worry, and pain. We have a six year old son and I just kinda always kicked into Mom mode, being strong and taking care of the day to day. Then days turned into months and I realized I never processed the grief of losing my Dad because I went right into being diagnosed and the mastectomy surgery and millions of appointments, etc. Plus everyone around me was shocked and utterly heartbroken for what I was going through. I spent a lot of time making everyone feel better, so they wouldn't feel so sad for me. If that makes sense? I don't know why I did that, it was just an automatic response to want to help them feel better and let them know I was just fine. I think I did that so much that I convinced myself I was fine. But now I know I'm not, so I need to start the grieving process and get over that part. It's hard when you're 44 years old and you've lost both your parents. Wow, sorry that was so long! I have a lot that's pouring out, I really appreciate being able to vent here.

I will grab my notes tomorrow and see where the margin was, I think it was the lower part of the breast. You don't get your full pathology report here, so I had to ask a million questions and take notes, draw diagrams, etc. I also don't have a 'team' like you have in the US. The breast surgeon is the main point of contact and you get other appointments only as they are needed. So I haven't met with an oncology doctor at all, just the surgeon and the RO. I didn't realize I would be declined an appointment to meet with the oncology doctor so I could ask questions and present my wishes for treatment. Overall I get the feeling most patients don't go against the grain, so the doctors aren't used to being questioned or having patients request a treatment they haven't recommended.

I also forgot to mention that I am having genetic testing done. I submitted my family history and bloodwork, the results take six months so I should hear in February or March.

Thanks again everyone for your help and support!!

TB90 · October 2016

Lek: What do women do there that have lumpectomies on their left sides. Do they not offer radiation? I do not recommend what I had as treatment, as I recognize it may not be appropriate for others, but I have never experienced a country with the reputation of Sweden not providing radiation safe treatment in this day and age to breast cancer patients..Many women have radiation to their left side of their chest regardless of their age and the risk is minimal. It reduces recurrence by 50% and I would not be prepared to accept anything less. I could provide you with my studies if you wish. Take them to your RO. If they will not do that, then they should offer hormonal treatment. This also comes with risk, but the risk in doing nothing else may drive you crazy. Please advocate strongly for yourself and research for yourself. I know we need to trust our team, but not to the exclusion of our life or peace of mind. All the therapy in the world will not replace believing you did everything you could to protect your health. Decisions right now will affect you for the rest of your life.

lek0715 · October 2016

TB90 – I am speaking only about my situation. I had DCIS grade 2 with mastectomy. For patients with lumpectomy or invasive cancer, yes they do get radiation as standard treatment, no matter which side. But for me I'm in a grey area where the RO team considered the benefits/risks and made their recommendation. I fell into the bigger risk category for heart damage given my age and the location of where I'd need to be treated. I did not simply accept what the RO team recommended to me, nor did they ask me to. They told me to take time to think about what they said, talk to my husband, family and friends. To carefully consider what I wanted to do, then to get back in touch with my decision. I agonized over it. I did not make the decision lightly. I was presented with the possible option of hormone therapy as an alternative and for me that felt like the right thing to do. I had no intentions of doing nothing. When I found out the oncology doctor denied hormone therapy, I tried to get an appointment to discuss why and present that as my wish for treatment. I didn't get the chance to do that because I was denied an appointment. So that's why I'm appealing with the patient's rights advocate. I do not want to do nothing, my wish is to do hormone therapy. I am advocating for myself as strongly as I can, as strongly as is possible within the system here.

Getting therapy is so I can process the grief and turmoil in my life from losing my Dad then being diagnosed with breast cancer. It has nothing to do with trying to be at peace with not doing everything I can to reduce the risk of recurrence. I am trying to do everything I can for that in pursuing hormone therapy.

I understand that radiation was the right decision for you and that you are happy and at peace with your decision. I think that's great and I'm sincerely happy for you! I'm only trying to do the same, find and make the right decision for me that I can live with.

TB90 · October 2016

Lek: So sorry if I was insensitive to your situation at all. I totally agree with you that this is about you. I asked those questions only to ensure that your team was offering every option to you. I felt that they were telling you that radiation was not an option. It is and has been for many women in your situation. But it is not the only or the right option. I just wanted you to know it was there in other areas of the world and that is the benefit of this forum, a wide range of experiences so that we never accept the limited info or options without questions. There is so much to grasp at this point, but it is important that you receive all the info you can so that you can make the best decision for you. I do not want to influence you with my choices. They are mine only and due to my personal needs. I was also in the grey area and half my team disagreed with the other half. My husband and I also disagreed. As I mentioned it was the most difficult decision I have ever made. Difficult because there was NO right answer. Therapy is critical for your emotional needs. Please continue with that . . . .I saw a therapist for months. My point was that making a decision that you are not content with cannot be fixed later with therapy. I must have expressed myself very poorly above. I just wanted to ensure that you had all the info about the options so you could seek the best one for you. Sounds like you are very well informed and advocating strongly for yourself. I am so sorry that you are in this position of having to advocate so strongly for yourself at a time when things are so difficult. All the best in your treatment and future..

lek0715 · October 2016

TB90 – you don't have to apologize! I need to apologize to you, I should have not written my reply so defensively. You were only doing what I asked. I came here and asked for opinions and experiences. You shared yours since our situations are so similar. Plus it's impossible for you to know what's standard treatment here and what is only applicable to my situation since I didn't specify, so I can see where you were coming from. There's lots that's confusing, even for me.

I've given this a lot of thought today and I feel that I've been so scared about radiation that I wasn't fully understanding your point, but now I think I do. Your story and your experience shows that women in my situation can have radiation successfully without damage to the heart. I'm sorry it took a while for that to sink in and it's definitely because radiation terrifies me due to how it was presented to me by the RO. I don't blame the RO because it is their job to notify me of the risks, but the message that stuck in my head is radiation = damage to my heart. So now I need to take a step back and think about everything again. I declined treatment in August, so I don't know where that leaves me. But I think I'll at least try to get an appointment to talk to the RO one more time, now that I feel I'm more prepared to ask additional questions. I don't know what will come of my request, but I'll give it a try and see what happens.

You're right that it's incredibly hard when you are presented with a decision that no one agrees on. I couldn't believe that I was left to decide something like that with such little help. Everything I read and everyone I talked to for advice just left me feeling more conflicted. Honestly, when the hormone therapy was suggested I threw myself at it like catching a life preserver because it felt like an answer to my prayer to save me from such a difficult situation. But that didn't work out. This is not how I expected things to go after my mastectomy. I thought I'd get the pathology results, get told my treatment plan, get on with my treatment, then be able to put this all behind me after treatment was done. I don't have an 'end' in sight because I haven't even gotten to the 'beginning' part of this. It's been very frustrating, very hard. And you are again right that no amount of therapy could ever fix the feeling that I didn't do all I could for myself. That's how I am as a person and that's why I'm trying so hard to advocate for myself until I feel I'm heard and get some type of treatment going that I feel comfortable with.

I truly appreciate you sharing your story and all your replies. I apologize again that I was difficult to get through to. I didn't realize that's how I was acting until today. That is definitely why I'm here, to get different opinions and different stories from everyone, regardless of where they are from. It also helps me so much to vent and get all this out to people who understand. Thank you!

TB90 · October 2016

Oh Lek: Bless your heart for your response. I was sick to my stomach today for upsetting you. I so wanted to help but when I reread my response I could so see how you interpreted my response as judgemental. The written word is so difficult to interpret without body language and intonation. I completely support you and your decisions. If there is anything I can do to help in the future, please let me know. I do want to be there for you.

april485 · October 2016

I wanted to chime in only because of the rads/heart issue. I had a lumpectomy (smaller breasts as well) and had targeted radiation done in 10 sessions over one week. They introduced "gold seed" into my breast (the BS put them in with a needle prior to my rads) and then they did an MRI to determine the exact spot to deliver the rads. I had this same thing done daily both in the morning and in the afternoon. Each time the pin pointed the rads with a scan and then dosed me with higher gays - sort of giving me 10 boosts to the tumor bed. This might work well for you. My heart and lung were kept out of the field (with the exception of a tiny corner of my lung they could not avoid) and as such, I am confident that this was the right move for me. Maybe they can do this for you? Not sure but worth telling you about. Hugs whatever you end up doing!

Notmyself · October 2016

I am so so sorry, for the losses of your mom and dad, for not having been able to fly back to the US to attend your dad's funeral, and for having the extra fight of having to fight for your health care.

My order thought was "come back to the US for treatment" but I see from your post thst isn't possible. My only other thought is you should make a pest out of yourself with your surgeon or oncologist or whoever! Every ache or pain, call them with concerns...I am a Jersey girl and we tend to Ben a bit aggressive, but really. I wouldn't just wait for each year check up. I would go in and complain and hopefully they will get tired of you and conceded that tp helping you get the therapies you need.

Stay strong and fight the good fight.

Dizzybee · November 2016

hi Lek, I don't know whether I missed it in your posts, I was trying to understand why your oncologist has said no to hormone therapy. I'm wondering if it is because the risk of side effects is considered to outweigh the benefit? Or because they do not believe you would lower your risk of recurrence? Because as I understand it ( and I'm new to all this as well) the benefit to hormone therapy is to lower the risk of a new cancer in the other breast as well as the tumour side. Like me, you had a fairly large area of DCIS, isn't tumour size also a risk factor for a new cancer as well as recurrence of the original?

It seems strange that you haven't had a proper explanation for denying hormone therapy, because it doesn't have the heart damage risk factors, it's protective to the other breast and as far as I understand it, it's a relatively cheap and effective weapon in the armoury. (I'm from the UK, where healthcare is also free but underfunded, so we're always aware that cost is an important issue)

Help/advice - DCIS mastectomy with unclear margins

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