A guest post by an anonymous writer, which will be an ongoing series.
Please join us on her journey!
Many people have been surprised that mastectomy would EVER be a treatment for Stage 0 breast cancer. Honestly, I was as well. I had the idea that it would be a simple, non-invasive procedure that would be complete in a matter of days, not months. I now understand it and do believe this is the best course of action for me.
The standard of care for DCIS is generally lumpectomy or excision biopsy followed by possible radiation and Tamoxifen (a hormone blocker), depending on hormone receptor status. I am hormone receptor positive (ER+/PR+). Additionally, I have six centimeters of affected tissue and am very small breasted. Of the two (of six) spots biopsied, one tested mid-grade and one tested high-grade. High-Grade DCIS may have a higher chance of developing into invasive cancer than low-grade DCIS. Overall rates of DCIS patients developing invasive cancer, if not treated, is 36-50% depending on the study. Standard of care if it does become invasive is then surgery followed by chemotherapy.
There are many options for DCIS. It is sometimes over-treated (immediate surgery followed by radiation, which has shown marginal benefit)
Options for treatment include:
Active Holistic Surveillance - "watch and wait approach". DCIS is managed by frequent follow-up scans as well as diet and lifestyle changes
Lumpectomy or biopsy excision only
Lumpectomy or biopsy excision with radiation
Lupectomy or biopsy excision with radiation and Tamoxifen
Mastectomy on the affected side or both with or without reconstruction. Sometimes radiation and Tamoxifen are recommended depending on the case.
Chemotherapy is not generally recommended.
I did my research. In the beginning, I thought I might be a candidate for Active Holistic Surveillance. In the end, I decided against this option. I could not find a doctor to monitor me in my area. The holistic practitioners near me do alternative therapies in conjunction with standard of care. I am not comfortable taking this approach without monitoring by a doctor.
I then thought I was a candidate for lumpectomy without radiation or Tamoxifen. I decided this was a good option, as I did not want radiation or Tamoxifen under any circumstances, given the possible side effects. I would simply deny those treatments.
After I found out I had six centimeters of affected tissue, mastectomy was recommended (with the removal of one lymph node to test for invasive cancer to be sure invasive cancer is not present). This is for a few reasons. One reason is that with a large percentage of the breast affected, cosmetic result is poor. Another reason is that the surgeon wants to make sure to have good margins. I went back and forth between thinking this was a good idea. At first, I considered only having the mastectomy on the affected side. My doctor told me it was totally up to me, but that he did not recommend a double mastectomy. I went for a second opinion and that doctor did recommend double mastectomy with removal of 2 or 3 lymph nodes.
In the end, I decided on double mastectomy for the following reasons:
I was not comfortable, in the end, with having an invasive cancer risk of up to 50%, if I considered Active Holistic Surveillance. That is a LARGE risk to take, especially being young and having young children. I thought of it like this. If someone told me if you do X or keep doing X, you will have a 50% chance of invasive cancer, I would change immediately. How would this be any different? Get rid of the affected tissue to reduce that risk to minimal.
I had read many accounts of people who did a lumpectomy on a large area and were very dissatisfied with the result - even people who thought they would not care about the cosmetic result (like me).
I read many accounts of people choosing a single mastectomy and later going back to have a mastectomy on the other side. I do NOT want to do this surgery more than one time in my life.
I wanted complete symmetry. If I am having a mastectomy with reconstruction, I may as well go up a cup size to where I feel most comfortable. I could have an implant and possible lift in my unaffected breast, but I am not convinced it would provide complete symmetry. The good news is I am a good candidate for nipple-sparing mastectomy unless the surgeon finds cancer cells on the back of my nipple during surgery.
I realize I do not have to do a double mastectomy, but it is the option I feel most comfortable with. I also realize that mastectomy does not prevent future breast cancer. In fact, this is one reason many cite for choosing Active Holistic Surveillance. However, with mastectomy, the risk is reduced from 36-50% down to around 3%. My doctor will monitor the remaining tissue (about 10% of breast tissue that is not removed). This is standard for mastectomy now, as "radical mastectomy" is no longer standard of care for most breast cancer and poses too many risks. This was a difficult decision for me to make. I did my research and felt the most comfortable with this choice. I am at peace with this decision and am ready to face whatever challenges will come. Recovery is going to be a long road. I do not naively believe it will be easy by any means. However, I can do it with help. I went to a support group today and was told that total recovery can take up to a year. It will be okay. I can do hard things!
A guest post by an anonymous writer, which will be an ongoing series. Please join us on her journey!
So here I am, two months and one week into my diagnosis with DCIS. In short, DCIS (ductal carcinoma in situ) is a cancer inside the milk duct(s) that is not invasive, therefore considered stage 0. However, it can, over time, invade other breast tissue or grow into invasive cancer. So the practice today is to take it out. This is my story. It is a story (I am determined it will be) of broken things made beautiful. Thank you for coming along with me.
Since November 9, the day of my diagnosis to today, my "best treatment option" went from a simple, small lumpectomy to mastectomy (recommended by two doctors). I am currently trying to make sense of this and make the best decisions I can regarding treatment.
Timeline:
August 2016: I turned 40! It was a big milestone and I was SO happy with my post-pregnancy body. I celebrated and wore a dress (probably a style too young for me) out to dinner with my friend and decided that 40 was a great age to be! February 2017: I had my first mammogram. I was not concerned in the least. I am healthy and always have been, so I had absolutely no question that everything would come back normal. An hour after I left the mammogram, I was called by the imaging center and asked to come back the next day. At that appointment, the technician told me that small calcifications (tiny salt-like crystals) were found in my right breast and need to be monitored. I was asked to come back in six months. Again, I was not concerned and assumed it must be due to changing breast tissue from weaning along with hormone changes. October 26, 2017: I went for my follow-up mammogram (two months late) and was told that the calcifications grew. I was told that most times they are obviously nothing and sometimes they are obviously cancer but that mine fell into the grey area so a biopsy would be needed. I was told this very seriously. The nurses and radiologist seemed very surprised that I was calm and that I didn't ask any questions. I didn't freak out/cry/awfulize, which many people must do. They were slow to speak, soft-spoken and gentle as if I should be upset. I wasn't. I honestly thought "oh well, I am sure it is nothing". In fact, I went home and told my sister who was visiting and nonchalantly said "the calcifications grew so I need a biopsy" and "worst case, I can get new boobs", not knowing what was to come! November 2, 2017: I had my needle biopsy. Again, the doctor and nurses were surprised that I was calm and no one came with me. I was even joking with them during the procedure. I was thinking "what is the big deal"? People get biopsies all the time and most often it turns out to be nothing. Calcifications are often nothing to worry about. After the biopsy, I went home and mostly didn't think about it until I didn't get results by November 9, as I was told I would have results by November 6.
November 9, 2017: I was going to call to get results that morning, but my OBGYN called me before I had the chance to call. He told me the news and later a nurse called to give me a referral to my current doctor, a surgical oncologist. I was in shock but I still didn't believe anything other than they would take it out in a minor procedure (I am overly idealistic until I have a reason not to be). After all, it is tiny salt-like crystals, stage 0 and non-invasive, so what more could be necessary? At this point, I had not done any research on calcifications or DCIS so I did not even know mastectomy was ever done for this cancer.
November 15, 2017: I was told by my doctor at my initial appointment that usual treatment for DCIS is lumpectomy followed by radiation and Tamoxifen for five years (a hormone blocker), for patients with positive hormone receptors (which I have). Some patients refuse radiation and Tamoxifen, so it seemed like an easy fix in my mind. I was also scheduled for a second opinion mammogram and breast MRI, which the doctor said would give him a more complete picture in order to come up with a treatment plan. This entire time, I was under the impression that I had one milk duct affected and would deny radiation and Tamoxifen, in that case, because of side effects. I went to the MRI and mammogram on November 27 and November 30, respectively.
November 30, 2017: All of my understanding of my case changed! I waited a long time to get the mammogram, then I waited another 90 minutes to see the radiologist. She told me that the original films showed three more affected areas and mentioned breast conservation. I said "wait...what? I thought there was one tiny spot. Are you talking about mastectomy"? She said, "Yes, that is the recommended treatment with so many spots, but you can talk to your doctor more about that". She said that some people go ahead and schedule the mastectomy with no further testing, given that the spots look similar enough to the original spot to assume they are also DCIS. However, if biopsied may show benign if concerned about breast conservation.
I was so floored how much changed in a matter of minutes. I couldn't care less about looks, but considering I am still nursing my son and didn't want to wean abruptly I was not quite so accepting. My plan was to have a lumpectomy and nurse on the unaffected side. I then went upstairs to my doctor and waited another hour in the waiting room and 30 minutes in the office, with may questions and concerns.
I was told that the other spots look like DCIS and if I want to consider breast conservation I can opt to biopsy another spot and see if it is DCIS or benign. I asked if he could biopsy all three. I was told that if I do need a mastectomy, it is skin and nipple sparing, so that was the good news. Also, no radiation or Tamoxifen would be needed.
December 15, 2017: I went in for my second biopsy. It was a core biopsy and AWFUL. I had two spots taken. The samples were huge dime sized sphere shaped samples and the biopsy took about an hour, awake in an uncomfortable position. The biopsy left marks about 1/16 inch by 1/2 inch rectangles, which will be scars.
December 20, 2017: I went to see my doctor to go over biopsy results and come up with a plan for surgery. I never saw my doctor, only the Nurse Practitioner because my doctor was in surgery. I was told that the biopsy came back positive for DCIS so the best option is mastectomy on the right breast. Some people opt for surgery on both sides, but it isn't necessary because there are other options for symmetry (slight lift, small implant). Insurance has to cover any and all options for both sides. I was also told the process, which seems terrible. Mastectomy surgery is only one inpatient night (I was hoping for more). Reconstruction starts immediately after mastectomy (same surgery) where saline expanders are places and filled with saline every so often until healing is complete and skin and muscle are stretched enough for reconstruction to be completed (usually 8-12 weeks). I also have to wear drain bags after surgery for up to a month and will take about six weeks to heal. I was set up to meet with the plastic surgeon January 10.
The options for surgery are:
do one side or both, with or without reconstruction (seems like a long ordeal)
with augmentation or not
do one side only with a small procedure for symmetry
The Nurse Practitioner was great and I did get a lot of questions answered, though it wasn't as helpful as I had hoped. I was hoping for a clearer best decision but only got more confused. After my appointment, my doctor sent me a text apologizing for not being able to see me and giving me some information. I was impressed. I have never had a doctor text me!
January 10, 2018: I had my pre-surgery meeting with my doctor who answered more questions regarding my specific case. I felt better about mastectomy, but still had some doubts, so I decided to get a second opinion from another top surgery oncologist. I was unable to meet with the plastic surgeon and my appointment was changed to January 12 (which was later changed to January 16, then January 17).
January 16, 2018: I met with the second opinion doctor and she answered even more questions and recommended bilateral mastectomy (both sides), but said it was my decision. This gave me more confidence that mastectomy is the only choice.
January 17, 2018: I met with the plastic surgeon and went over my options. He told me the same options I was previously given and told me if it was his wife he would recommend doing bilateral mastectomy with reconstruction, but that isn't necessary because there are other options for symmetry. I was told that it is actually three surgeries (during mastectomy, 8-12 weeks later for reconstruction completion and later for an adjustment). I will also have 2 drain bags on each side for up to a month (one is taken out after a week or two). He also told me that when I wake up from the surgery with the expanders, I won't be totally flat and "in fact will look arguably better than you do now" (with my natural breasts...gee thanks! I think they look pretty awesome, albeit small, for my age and having birthed and nursed three kids).
Surgery will be scheduled for February and I have to make a final decision about the left breast soon. I am working on weaning, which is going relatively well, but still difficult. I have had so many thoughts and feelings about this. I cannot believe that I have to go through this for several salt sized crystals. The problem is that I am so small it would be near impossible to take out all of the affected tissue with lumpectomy and get good margins and a good cosmetic result. In addition, radiation and Tamoxifen would be recommended. Tamoxifen would also be recommended if I decide to have a mastectomy on only the affected breast. It is ironic that this is happening to begin with, given I nursed my kids for over seven years collectively! Nursing is supposed to greatly reduce the incidence of breast cancer and I don't know anyone who nursed that long!
In dealing with the options, I am tired of people saying "just do both" like this is an easy decision. It isn't. However, I am leaning that way just to avoid possibly having to do this again in the future, Additionally, I can look a bit better (would go up from barely a B to a full C). I don't actually care very much about what I look like, but if I have to go through this, I might as well get something to better fit my body. I feel terrible about this too because I hate the idea of waking up with totally numb, useless breasts that have no purpose besides looking nice. It's a lot to go through to look nice. I would rather be whole and have useful breasts that have feeling in them. Anyone who thinks that early detection means simple is wrong. It is still hard and complicated, just not so much treatment is needed and it isn't life threatening (Thank God).
The most amazing thing through this whole ordeal (so far) is that I have been positive and practical most of the time. I only cried three times, so far. The first day was November 30 at the thought of weaning abruptly. Two other times I cried after appointments. Most of the time I don't think about it much and go about and enjoy my life. I'm so grateful for the simple things. All of my friends and family who know what I am going through are totally surprised by my attitude about it, so that's something.
I am still convinced that this experience will turn out, in the end, displaying more beauty than pain.
