Episode 46 Shownotes - Understanding DCIS
Hey, and welcome back! As always with the science podcasts, I am a doctor, but not your doctor, so you should run all treatment decisions by your primary team! I am not recommending or endorsing any particular treatment, as each person’s case is different, and determined by their particular cancer specifics. This week is a lot of science and a smidgen of coaching. I love to teach what I really know about – these podcasts are so easy to create and record, and I love feeling like I am sharing my knowledge and helping patients understand their disease! I haven’t put a lot of focus on DCIS in the past, as I have the thought that these people are all doing fine, and not too worried because their prognosis is great, but I have patients who are struggling here too, so I know this isn’t always the case. Maybe by helping people to understand it a bit better, there will be less fear.
But first, let me take a minute to share what’s up in my world. For one thing, it is SPRING. I love this time of year – the flowers blooming, the warmer weather, the glorious smell of spring trees and plants. As the days get longer, it is easier and easier to get outside and walk, so if you have been not doing much due to winter and covid, let me encourage and invite you to pop in some headphones, and we can go for a walk together – this podcast is a great length for a quick walk! Spring is also the time I prep for summer – setting up my boys’ camps, making sure we have sunscreen, finalizing my vacation schedule from work, checking that the boys all have bathing suits that fit. And let me tell you, they have all grown like crazy since last summer! 3 of the 4 are significantly taller than me, and Miles has done that kid thing where they look like taffy being stretched. He has gone from shorter and rounder to taller and thinner overnight. I will soon be “little mama” to him too. In the spring, I always make sure I have all of my annual testing scheduled as well. I try to do it spring and fall while the kids are in school, so I don’t take my days off to go to the dentist and such. The older we get, the more we have to do, right? I am 50, so need an eye exam, skin check with derm, gyn exam, mammo, colonoscopy and dental exam. If you aren’t sure what you need, I recently created a great freebie called 12 months to reducing risk where I go over what you can do to reduce your cancer risk and improve your health, one task per month. It is available on my website, Best Life After Cancer.com/freebies. Each month also has links to lots of good help following the advice as well. I think it will end up being one of my most popular and useful freebies.
As we get further into 2021, I am also so grateful that we are getting further into our Covid vaccinations for more people – I am really hopeful that things might turn the corner in July and allow us a bit more normalcy in our lives. My husband and I are in medicine, and both vaccinated, as are several of our siblings. My parents got their second shot this past weekend, just in time to celebrate my dad’s 80th birthday at the end of this month. My 50th birthday came and went during covid, and we did celebrate with immediate family, but my husband’s is this summer (yep, I married a younger man!). I am really hoping to have a party for his – outdoors, probably, but a bash to get our friends together that we haven’t seen in ages. These things to look forward to are what keep us moving, right?
Talking about keeping moving, I think it is time for me to do the same, and get to work talking about what you came here for! Today, I am going to teach about DCIS, or Ductal Carcinoma in Situ. Many people do not really understand the difference between a DCIS and an invasive breast cancer. So let’s start there. DCIS is abnormal cells growing in the breast ducts, where the milk flows when lactating. Until those cells develop the ability to break through the walls of the ducts, they do not have the ability to go elsewhere in the body, so this is the BEST time to find them – when they can’t spread to the nodes or elsewhere in the body. Developing the ability to invade through the duct walls is when they become an invasive ductal carcinoma. The name fits – this means the cells started in the ducts, but have invaded into the fat of the breast.
About 20 to 30% of all breast cancers detected are DCIS. DCIS is non-invasive, and is a bit controversial in the US whether it is precancerous or actually cancerous. Some doctors say it is a cancer, while others say it is more like precancerous cells. But the bottom line is that improperly treated, it can grow back. If it grows back, half of the recurrences will be invasive cancers that can spread to the lymph nodes and elsewhere. This is really what we want to prevent – something that is not a real problem growing back as something that can be life threatening. If DCIS only grew back as DCIS, I think we would be much more comfortable saying it was precancerous and not being as aggressive in treatment.
Most DCIS is mammographically detected. Most commonly, calcifications are seen along the ducts in areas with the DCIS. Women’s breasts can have benign calcifications, but calcifications in DCIS are often irregular shapes and sizes, and clustered together. Other times, DCIS can be seen as a solid mass on mammogram, either with or without calcifications. Less commonly, it can present as a palpable mass or nipple discharge. If only calcifications are seen, diagnosis needs to be made with stereotactic biopsy, which means biopsy targeting the calcifications seen on mammo. Calcifications are NOT seen on ultrasound, which is a test using sound waves to “see” masses based on density differences between normal tissues, solid masses and cytstic areas. If there is a mass on mammo, usually an ultrasound will be done to see if they can see and target the mass, and do the biopsy under US guidance as this is easier and more comfortable for the patient.
When a DCIS is found by biopsy, some form of surgery HAS to follow. This is because a complete sampling has not been done, and invasive cancer could still be hiding there if the area is not removed in total and examined under the microscope. Additionally, as mentioned previously, left untreated, DCIS can go on to become invasive disease down the road. Surgical options are commonly either lumpectomy (removing the area with a rim of normal tissue) or mastectomy, which involves removing the entire breast, either with or without reconstruction. A lumpectomy can also be accompanied by a cosmetic procedure like a lift, and contralateral reduction and lift to make the breasts as symmetric as possible. Many breast surgeons have patients see the plastic surgeon up front to discuss reconstructive options after both mastectomy and lumpectomy. If you are interested in more information about reconstruction, Podcast episode 37 with Dr. Alex Au reviews much more detail about reconstruction.
Following the surgery, radiation is may be offered to help further decrease the risk of recurrence. Radiation is not usually required after mastectomy. Many, or even most, cases require radiation after lumpectomy. There are some places that recommend radiation for all DCIS cases. Some places do additional testing to determine the need for radiation. There are several tests that help to determine the need for RT. The original test, DCIS oncotype, and a newer test, DCISion RT, both look at the genes of the DCIS cells (so not the patient’s genes, the tumor’s genes) to determine how likely the cancer is to grow back and the likelihood of transformation to an invasive ductal carcinoma. If a DCIS has features that are more aggressive, like low ER and PR receptors, high grade histology, large size, or close margins, many doctors will NOT feel that the patient is a good candidate for observation (meaning skipping radiation) and will not perform these tests, and move straight to radiation.
When we talk about radiation, there are several common options and then some more uncommon options. The common options are whole breast radiation and partial breast radiation, both with external beam technique. What this means is that the radiation is generated in a machine, and delivered via a beam, like a high energy xray. Many patients are offered whole breast radiation, but if the cancer appears small, nonaggressive and well localized, partial breast radiation may be offered. Whole breast radiation treats all of the breast tissue and ductal system. Treatment can be given either on your back (supine) or on your belly (prone). Prone breast radiation can help to decrease heart doses in left sided cancers. Another way to improve heart doses is with Breath hold treatment. For more discussion of this, listen to Podcast 29, Everything You Wanted to Know About Radiation. Partial breast treats the site of the DCIS alone with a rim of normal tissue. There are pros and cons of both, which need to be fully discussed with your team, as tumor characteristics, patient body size and shape and other medical problems can determine both optimal treatment and side effects.
Sometimes hormonal therapy is used in DCIS. Hormonal therapy is a bit of a misnomer. This is not actually hormones, it is a hormone blocking agent. Tamoxifen blocks our bodies’ hormones from stimulating cancer cells, and the aromatase inhibitors decrease the creation of estrogen and progesterone by our bodies’ fat cells after menopause. Homonal therapy not just decreases the risk of the known cancer coming back, it also decreases the risk of developing NEW breast cancers. Many women are hesitant to take hormonal therapy due to fears of side effects, but the data show that a good percentage of people have no side effects AND the side effects resolve when the medication is stopped, so if it is recommended, I think patients should try it and see. It seems a shame to miss out on something that might help due to fear of side effects. For the most part, the side effects are more uncomfortable than dangerous, like hot flashes and joint aches and pains.
DCIS can be part of the spectrum of heritable breast cancers. Knowing and keeping track of family history is important. I have a podcast that goes into a lot of detail about genetic testing, but the bottom line is this: if you have multiple family members with breast or ovarian cancer, especially breast cancers at young ages, you should be evaluated by a genetic counsellor. The testing is quick and easy and requires either a blood draw or saliva sample. Additional diagnoses in a family history that can increase the risk of having a breast cancer genes are triple negative breast cancers, or family members with pancreatic cancer or prostate cancer, so many families with these diagnoses will also qualify for genetic testing. Genetic testing is important in terms understanding risk. If you have a breast cancer gene, this DCIS is very unlikely to kill you (survivial rates, in fact are up to 95% in many studies of DCIS), but another more serious breast or ovarian cancer down the road could be life threatening. If you have a breast cancer gene, there are options for additional preventative surgeries, or additional testing to help detect new cancers, that can help to keep you as safe as possible.
That is it for the medical part of this. The coaching part of this is next. There are many people with DCIS who have a simple thought: this could have been much worse, my odds are great, I am blessed. They believe this, and it makes them feel like the cancer is dealt with and they are lucky. But some people are terrified. Just being told something could progress, the word cancer itself, can be enough to send them into a tailspin. It is important here to focus on the excellent prognosis, and not let one’s brain dwell on all the things that could go wrong. But more often, I see people whose challenge is their thoughts about what other people say about their cancer. Many times, people with DCIS hear “oh, if you have to get cancer, that is a good one!” or “you should be grateful it’s not a bigger deal”. But they still have to go through the stress and pain of surgery, the worry while waiting for tests. Some patients with DCIS even need a mastectomy due to the size of the area – too big an area of abnormality in too small a breast. Many need 4-6 weeks of radiation on top of that. So when people tell them it is “no big deal” patients often feel like this IS a big deal. They feel misunderstood, and worse, like people don’t take their discomfort, fear and inconvenience seriously. I’d love to suggest something – if someone has been diagnosed with a cancer of any type, when you talk to them, start with something like “I’m sorry you have to go through this, how can I help?”. My very first question for all patients at consult is “How are you holding up with all of this?”. And then I really listen to their reply. Because every person has the right to feel how they feel. It may be different than how we would feel, but they get to feel whatever they feel without judgement. If you have had this experience, I want to offer this: we get to feel whatever we want to feel, but we also get to think whatever we want to think about what people say. If they say something we don’t agree with, we don’t have to think things like “they think I am just worrying unnecessarily” or “they think I am complaining for no reason”. These thoughts feel like crap, and for sure will lead to a feeling of resentment towards the speaker. Try out different thoughts: “they are confused about what this means”. “They have never been in this situation and don’t know what to say”. “They are trying to be helpful and supportive, and are failing almost comically”. If someone is asking questions you don’t feel comfortable answering, turn it back around. A great response is “why do you ask?” This helps you understand if the question is valid and appropriate, or if they are asking for reasons that you just don’t want to indulge. If the answer is a reason you don’t like, and want to answer, consider calmly stating “I’m sorry, I don’t feel comfortable sharing that part of my journey right now” and change the subject. Just remember, though, we control our thoughts, so if your thoughts are leading to resentment, you have the option to change them.
Sometimes, though, it is our own brain’s thought that we should be relieved and happy that leads to us being upset and frustrated when we don’t. Our brain is saying, “you should be so relieved!” but yet, you feel like crying. This happens when we try to change to a better thought without having processed the initial feelings yet. Sometimes, we need time to grieve and be sad, even if the outcome will be good. So if you feel sad, take time to process that. Get out of your head, and into your body. Explore and breath into the feelings. Maybe it’s a lump in your throat, and feeling hard to breath. Open to those feelings, breath into them, and don’t force them down. You will know you have processed them when they begin to feel lighter and less heavy.
Finally, one of the things I hear surprisingly often is a type of survivor’s guilt. Patients tell me they feel bad that they got lucky when so many other people don’t. This is especially true if they have lost friends or family to cancers in the past. For some, it is seeing really ill looking people in the waiting room at radiation, or hearing the stories of people not doing well in support groups. Some people even feel like they don’t deserve a good outcome, and that someone else should have had it. Let me start by saying, we all deserve every good thing that could happen in life. We are all born whole and perfect. While our decisions through our life may not be perfect, that does change that as humans, we are worthy of kindness, love, health and more. We all know we don’t get to pick our battles. This means you can’t pick an easier battle, but you also can’t pick a harder one. You get what you get, and you just move forward with as much grace as possible.
If you are struggling with your thoughts about your diagnosis, this is a perfect topic to bring to a free minisession, and I encourage you to sign up for one. You can find the link to sign up at www.bestlifeaftercancer.com. Scroll to the bottom of the homepage, and it is at the bottom of the page. I’d love to chat with you about this!
Alright, friends, hope you have a great week! I’ll speak with you soon!
