Anyone a long way out from a DCIS diagnosis?
Is anyone years from a diagnosis of DCIS still posting on this board? By years, in this case I mean like 10 years or more after diagnosis. I would love to find out how things have worked out for you.
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Maize, not 10 years but over half that almost 6 years. Everything is going good, no recurrances or new cancers. I was 42 when diagnosed. The thing that I dislike most is the continued survelliance. Since I have very dense breast tissue and mammograms are still of little value, I have to have yearly MRI's. Then if something is picked up on an MRI i do follow up with ultrasound. It can be stressful around that time but my radiologist told me that I have what she called 'Busy Breasts" and I can't be hyper sensitive to every initial finding on an MRI. My biggest hope is they come up with technology for us previously diagnosed that have very dense breast tissue as right now there is not one really good tool to examine for cancer without having to follow up on any finding from an MRI. But, so far so good. I am thankful I am this far out with no further problems. I hope this is helpful info for you. Let me know if you have any specific questions that i would be happy to answer. sincerely, Linda
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Thank you for replying, LindaLS. I'm glad to read you haven't had any recurrences or new cancers. That makes me feel hopeful. Do you mind telling me what type of treatments you had for the DCIS? (Mine is/was Grade 3, too, 0/0 nodes, ER+/PR+, a little over 1 cm.)
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Maize -you start the best topics!! Thanks
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Thanks for the compliment, Shayne!
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Maize,
Just keep in mind with this kind of thread that most women who are far out from an original Dx and doing well arent likely to be frequenting a board where many of the people are battling at the moment, just Dx-ed or whatever....
Many just tend to leave and go on living their lives rather than thinking about BC 24/7/365...
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Marie5890,
So your breast tumor was benign? Lucky you! I looked up the benign tumor you had. Who would want to dwell on breast cancer 24/7? Do you offer advice to women who use this site who have had benign tumors, not actual breast cancer?
I have read some interesting comments on this site from women who were treated for breast cancer over ten years ago. Maybe there are some women out there who been treated specifically for DCIS, since it's a subset of breast cancer, over ten years ago who would chime in on how they're doing and if they have managed to not suffer a recurrence and what lifestyle changes they've made, if any. They may have some great advice to offer.
It would be interesting to know what they've done that they think has made a difference in preventing a recurrence of DCIS or the development of a new cancer. There may be some women who had DCIS several years ago, who check in once in awhile, as some women do who have had other types of breast cancer.
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This is a great topic. I hope there are some who will respond.
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Hi Maize,
Sorry I haven't responded sooner. My treatment was lumpectomy with appropriate margins followed by radiation. My radiation was brachytherapy which consisted of inserting a balloon where the tissue was removed which is attatched to a catheter. The radioactive source is then delivered to the site. I had it done twice a day for five days straight. I was in a clinical trial for its use. I have to say that it did cause severe burn on my skin because my breasts are relatively small and I don't think they allowed enough space between the balloon that delivered the radiation and my outer skin. This was a complication that I did not forsee. I had to then have approx 10 laser treatments to return the skin to almost normal. If I had to do it over again, I think I would have gone the traditional radiation route. I also took Tamoxifon for 2 1/2 years but because of some of the side effects I decided to take the CYPD2 blood test which determined I was a low metabolizer of the drug so I stopped taking it. As far as lifestyle changes, I am a believer that the severe stress I was under the year before contributed to me getting DCIS. I was not taking care of myself, not eating, not sleeping enough, very hard year prior due to my father being extremly ill for months in the hospital. Now I make sure to eat right, tons of vegetables and fruits, not much meat and no processed foods. I have changed my diet a lot and I really think diet and nutrition is one key factor in keeping healthy. Also, these past years I have gotten more active which involves lots of walking, 5 miles at least 4xs a week and yoga. These physical activities are not just helpful for my health and body but also the yoga in particular for reducing stress. I also take 1,000 mil of Vitamin D3 and try to get sensible sunlight everyday (approx 15 min) a day as there have been many studies that have shown that Vitamin D is the most important vit in reducing your chances of getting breast cancer in the future. I do get my blood taken yearly at my Gyn visit to check to ensure my Vitamin D level is above standard recomendations. And lastly, I am a big sleeper, I get 8-9 hours of sleep almost every night. I think it is critcal that you give your body time to recover and heal from each day. I have to recommend one book which is Dr Susan Love's Breast Book. It is excellent in going over DCIS and the real chances of recurrances of DCIS or Invasive Cancer. Sometimes percentages can be misleading and make you think you have a much higher chance of a recurrance but actually Dr Love puts all the statistics in proper perspective and when I was first going through all this, her book was very comforting and reassuring to me. Maize, you should feel very hopeful for the future. Chances are you will have a very long life and never be touched by this again. I am grateful every day that it was DCIS as it could have been so much worse. And now I know that I need to be very diligent in my early doctor visits, mammograms, Mri's and unltrasounds. It seems like a lot to go through each year and it really is at times, but it is something I have to make a priority. After this amount of time, I do feel blessed and confident. I don't know what the future will bring, but I am so much stronger and educated for having gone through this. It was a wake up call for me in a good way. I hope I did not overload you with information. Once again, I would be happy to answer any other questions you have and if you happen to be on this board in 4 years I'll definetly give you an update as to how I'm doing. Take care, sincerly Linda
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Thanks Linda - your updates help us all.
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Thank you so much, LindaLS!
I had much of the same types of stress before being diagnosed and I really do think it may have influenced the cells somehow into becoming DCIS. What you wrote helps a lot. The diet, the changes in the type of foods, the exercise, the vitamin D3 (turns out my vitamin D level is pretty low), lowering stress. I couldn't get an answer about the real risks of recurrence from the doctors I first saw, or how likely it would be that I could get an invasive cancer later, or answers to some other important questions, so I got a second opinion and think I got real answers.
Like you, I'm grateful that it turned out to be DCIS. I just wish that the first doctors would've explained things to me and that would've eliminated all the fears and chaos of trying to find out what to do and how. The new doctors said that since it appears I may have a collagen disorder, the type of radiation I can get, or whether I can get it at all, depends on what type of collagen disorder I have. They said there are certain collagen disorders that may make radiation unsafe to do because the skin might never heal and could be a long term complication. The first doctors wanted me to have rads first and find out what type of collagen disorder I have later. Turns out, the second doctors don't agree with the first about some of the other types of treatment, either. Because I had a blood clot in the past, they don't recommend Tamoxifen like the first doctors did. They explained that the benefits of Tamoxifen aren't the same for all women.
It's good to know that you are doing well. Please let us know how you're doing--update us. If you think of any other things to tell us, I'd sure appreciate it. It makes me feel better hearing you're doing fine. (I read Dr. Love's blog now. She was diagnosed with leukemia and is being treated. I am praying she recovers fully.)
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Loved your response LindaLS. These are all the changes I am working on. You have made my morning....I am still recovering from diep due to extensive high grade dcis...a spot of micro invasion...so glad to hear you are doing well and thanks again.
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Shayne, glad I can help in any way.
I sure know about the lousy feelings and bad thoughts that come into our head when first diagnosed/through treatment and beyond.
The one thing I know from my experience is after this amount of time I have gained proper perspective which has really helped me. Time gone by does help. stay strong.
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Maize,
I too have been through the roller coaster ride from multiple opinions from various doctors. I had a very bad experience with the first doctor. He immediatly strongly suggested masectomy and was not giving me much information in regard to the findings on my first MRI. He spoke to me for about 15 minutes and that was it. I was beside myself thinking I was going to die. I did have DCIS but I also had a 1.5 cm and 9 mm benign fibroadenomas that the radiaologist reported as highly suspicous of cancer. The doctor did not even want to do a needle biopsy on the two areas to know for certain if it was cancer or not. I thought I had multiple breast cancers. That doctor created a huge amount of fear and chaos at the time- same feelings I had that you experienced with your first doctor. So, I know the exact feelings you have had just different scenario.
I have learned to question, question, question. Also, seek out the answers until you are 100% satisfied. I have gone as far as to make an appointment with the radiologist reading my MRI to sit down with them and show me my scans and walk me through what they see on them. I hope you got the information you needed to decide on radiation or not and a straight answer on your collagen diagnosis. I am interested to know if anything was finally determined?
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maize - great idea for a thread!
While I myself am not yet a year from dx, I did hear about a long-term survivor the other day:
I had bumped into my neighbour who had been away travelling for some time and hadn't seen me since my dx. She asked about my LE sleeve and when I began to explain how bc treatment often results in this side effect she said "Oh yes, I know. My sister had bc in one breast and then a year later in the other. We just celebrated her being 30 years cancer-free this year, and her 80th birthday last year"!!!
I have known this neighbour for 10+ years and she is very nice. For me, hearing about her sister is literally pretty close to home and made me feel so hopeful. Even though you asked to hear directly from long term survivors, hopefully hearing second hand is helpful too!
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Ill take second hand ANY day of the week! Thx Cathy!
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LindaLS,
It's a shame the first doctor you saw was so uncaring. You must've been really scared. You must have been so scared believing that you had multiple breast cancers. Sorry to read that you got a burn from the brachytherapy.
My experience was similar--I didn't know if DCIS spread or not. I didn't know if there is any way to tell if the DCIS was all removed during surgery or if they really can't tell for sure if they got it all. No real answers. Kept thinking: What can I do? Because what this doctor said about my DCIS lesion--that it is not a true cancer, but very large--while the other two said it is a true cancer, but not very large-- I was really wondering: "What the?" Which is it?
The doctor wouldn't order the Oncotype DX test, but my insurance covers it. ??? The doctor told me not to pay any attention to what other doctors said (in reports, journals, etc.) It's hard to do that, IMO, when these reports are published by doctors who did a lot of research and are considered reputable, learned scientists. Now I understand why so many people say: "Get a second opinion."
I have an appointment to find out what type of collagen disorder I have. I don't know how long it takes to find out what it is. Feels like a "double whammy". I need a new MO, in addition to the new RO, so I made an appointment. I am going to ask: "What should I do when those doctors don't agree about the right treatments? "Will you tell me the smartest way to deal with this?" "Will you tell me how to try to prevent a recurrence?" The input from the other doctor about what type of collagen disorder it is will be really important. Hopefully, this medical oncologist will tell me what I should do--"First you do this, then you do that..." Never expected to have to have second and third opinions.
Cathy1968,
""Oh yes, I know. My sister had bc in one breast and then a year later in the other. We just celebrated her being 30 years cancer-free this year, and her 80th birthday last year"!!! That makes me feel so good--it really makes me feel hopeful!"
By the way, does the LE sleeve help a lot?0 -
Maize,
Hard to say about the LE sleeve yet as I have only had it for a week. So far so good...it's comfortable and no increased swelling. But I was dx'd with LE in March this year and have gone through the whole treatment, being fitted for a sleeve was the last step in long term maintenance.
Were you asking about wearing one for preventative reasons or because you have LE? In either case please check out the LE forum on this website. The wealth of info on there is invaluable, anyone at risk but with no symptoms yet is still welcome to lurk or post questions; the women who have been dealing with LE for years are so kind and more than happy to help. It's so worth it to find out what you can do to prevent it! Good luck!
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Cathy1968,
Thankfully, I haven't gotten it, but the surgeon said there will always be the possibility of it because lymph nodes have been removed. Three of my lymph nodes were taken out--luckily no cancer in them. I see there was no cancer found in your nodes, either. I read about a lady who never had lymphedema after lymph node removal, not for years, till she went hiking one day and got stung by a bee. So something like that can set it off, I guess, and it can happen whether several nodes are removed or only one?
I'm glad the surgeon removed the nodes because it makes me feel more certain that the DCIS didn't micro-invade and spread into the lymph nodes. I guess if it does invade at all, then technically, it isn't called DCIS anymore?
I've been trying to change my diet somewhat in the hope that it will prevent the DCIS from returning or prevent getting it in the other breast. In my case, chronic inflammation may have caused the DCIS, though, caused by chronic infection (or infection caused by inflammation?) so I don't know how much of a role diet plays in that case. Some of the doctors say that the diet makes a big difference in preventing recurrence and some say that's wishful thinking, that diet can't give you control over the initiation or development of breast cancer. It seems logical to me that the amount of fat and other elements in the diet have to play a role in how the chemical messengers set off reactions in the breast tissue, since the chemicals or enzymes or whatever communicate with the breast cells. Exercise, too, like, LindaLS mentioned, is supposed to have a beneficial impact, maybe because it lowers the level of fats and that lowers estrogen? It seems they all pretty much agree that obesity = higher risk of cancer. Are women, as they get older, at higher risk of breast cancer because most women gain weight as they get older? Personally, I think that stress releases hormones and/or chemicals that directly cause harm to the body, to the heart and all the rest of the body, if the stress is prolonged. It seems that lack of adequate sleep and working during night hours may play a significant role in the development of breast cancer, according to some of the latest reports. Have you read them? There's so much more to this breast cancer than I ever wanted to have to know..but I feel like it's important that I find out whatever I can about it. Some of the diet aspects seem to be common sense and common knowledge, but some are not clear (to me). I would like to think I have some ability to control whether this comes back or not, but I don't want to become fanatical about it.
Not sure whether to drink milk or not drink milk. One of the docs (not onco) told me that D3 is very important, but not just in breast cancer, but in heart disease and many other diseases and is often low in patients with ANY type of disorder. Did you read about Jane Plant and how she allegedly cured herself of breast cancer? http://www.alkalizeforhealth.net/Lnotmilk6.htm Or what about the alleged link between a diet high in starches and breast cancer? Are they including starchy vegetables in that? http://news.yahoo.com/starchy-foods-may-boost-risk-breast-cancer-recurrence-220305537.html
I wonder if your neighbor's sister changed her diet after her diagnosis--if she did something different, made some lifestyle changes, that made all the difference?
Not sure whether soy is okay or not (soy is a hidden ingredient in so many foods!). Do you think soy is safe? Not sure whether to take a multiple vitamin or not. One expert said: "Don't take a multivitamin". A pathologist told me that, too, but I do not know why he thought taking vitamins is not good. I think he was saying that the body has to get the vitamins and minerals from the food, not from artificial sources, because the nurtrients from the food are assimilated better. Patrick Swayze's wife said that she was trying to figure out if there was a way to feed him without feeding the cancer...how would it be possible to feed someone with cancer without feeding the cancer? Does the cancer grab the nutrients away from the healthy cells? How much do scientists know about this?
There's that one group who believe that being underweight (significantly underweight) prolongs your life span, but there are also studies that show that being underweight (or overweight) significantly decreases your life span. If we all get and stay underweight, will the DCIS not have enough "food" to develop and to come back? There's too much that is unknown, I think. Linda McCartney was evidently a vegetarian, but she got breast cancer and died from it, so how much did it help her to have that diet? Was it caused by genetics? Did the vegetarian diet keep the impending breast cancer at bay for longer? Did the vegetarian diet cause depletion of certain nutrients that made her immune system weaker? Would she have gotten it anyway, no matter what type of diet she followed? What do you think? Too much is unknown, IMO.
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Maize - see a dietitian or ND. Youll get all the answers on food, and which have an effect on estrogen in the body. I cut out all dairy except goat now and then. My ND is not big on supplements, except the few she has me on - Colostrum, Perilla Oil (better than fish oil which can have toxins) Vit C, D3. I drink green smoothies every day instead of coffee.
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Maize,
You bring up a lot of good questions, points and counter points to life style changes that may help to prevent recurrance or a new cancer. I had all the same nagging unanswered questions about diet, is soy good or bad, what about multi vitamins, what about dairy, what about Vitamin D and on and on. Also, what impact does exercise truly play in reducing your chances of recurrance. Additionally your point about the impact of stress. Seriously, I could not follow all the differing opinions from doctors, medical community and the latest research study to come along. One study says one thing and another says the complete opposite so I can understand your frustration.
The best I could come up with over the past years in regard to all the conflicting information and questions is I made a decision regardless of having had DCIS or not that there were changes I could make to improve my diet, my physical health and my mental well being. I believe the most important thing is to eat for nutrition and not calories, to exercise for a healthier body to feel better and to focus on reducing stress because I know it would be better for my overall well being. I know that if I tried to incorporate these positive changes, I at least would have a healthier immune system and be in generally overall better health regardless of the things that I may not be able to control. As you mentioned, I can't live my life being a fanatic about every single things that may or may not play a role in by future cancer risk. If I focused on the bigger picture I would also feel better about the future. So that is how I have learned to look at it.
It seems like every day some newly discovered food or vitamin or herb or whatever it may be comes out and a study or doctor says you will reduce your chances of cancer recurrance if you simply take or do x, y or z. I personally can't keep up with it nor do I try. I have just tried to focus on the basics that generally promote good health. Eat nutritionally dense food, reduce sugar intake, get some exercise, and reduce your stress levels by what means works for you. Also, try to sleep enough for your own body to recuperate from the day. Like you mentioned the common sense approach.
I did have to laugh when you mentioned some people believe that being underweight can prolong your life. To me perhaps it may prolong a unhealthy life. The funny though is that my own oncologist once said to me in passing, you know those skinny people, they never seem to get sick and it seems like they live forever. I thought to myself, probably true because they don't consume enough nutrition to fuel any cancers in their body from growing. But, I think it is just a misperception that they don't have their own set of health issues like you mentioned. I agree with you in all of thise, too much is still unknown. As time goes on I am hopeful that we may be able to get more scientifically based answers to all of this. take care, Linda
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Maize,
Sorry havent responded sooner, very busy with work and other life matters, and day to day stuff.
I tend to hang out in the "Not Diagnosed but Worried" section of the boards and help the newbies who are going thru the initial scare of "is it BC?" when something is found or if there are breast concerns that have them here.
I do offer my .02 guidance and a sense of perspective, and support and encouragement when I think it may be helpful.
Can't take credit for the perspective of many women, esp those in the early stages, often move on when they have gone thru treatment and have BC undercontrol etc. Beesie is the one who has brought that reality for me some time back. Many women who are stable move on after awhile to put BC in the review mirror whent they get to that point.
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Hi, it's been 9 years since I was diagnosed with DCIS and I'm still alive
. I never thought I would be. Actually it's 10 years because when I had the bad mammo they look a look at the previous years and saw it was bad then but the doctor reading it never noticed. I had a very small area, 4mm and had lumptectomy only, no rads, no tamoxifin. I've had a couple scares and false alarms in the last 9 years but so far so good, no more cancer. Those first few months after diagnosis were among the most difficult in my life, I was so depressed and confused and had SO MANY QUESTIONS. The main one being, how do I know there isn't more cancer lurking inside me???? and I'd get the old shoulder shrug from the doctor. I was terrified. It seemed no one could answer any of my million questions. I've found there are some really, really good doctors out there and some real jerks. I am an extreme hypochondriac so this has not been an easy road for me.
At the time I was diagnosed I found out a friend of mine had been diagnosed about 10 or so years previous and like me she had no rads, no tamoxifin. I was so grateful when I found this out about her, she was a great help. And here she is, at least 20 years from her initial diagnosis and still alive and well with no recurrences.
Please feel free to ask me anything you want, I'd love to help in any way I can.
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Thank you Old Oak for responding. It's good to hear your good news and helps to know for ourselves.
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Yes - just good to hear from you. Thanks for posting!
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OldOakTree, it's great to see you! And great to know that you are still doing well! 0
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yeap, I want to be were OldOak is now someday...think I need few more years
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Linda, a couple of items in your post caught my eye. First, I'm only 3 weeks out from brachytherapy and my breast is brownish-red in the quadrant where the catheter was located. Is this what happened to you? How did you decide to get laser therapy (did the doc suggest it would help?) and were you somewhat pleased with the results? How long did you wait before laser treatment? At this point, I have no idea if this discoloration is permanent. Second, I had not heard of the blood test you spoke about regarding metabolizing tamoxifen. So this would indicate that in some women, even if their cancer is ER+/PR+, tamoxifen might be less effective? I've only been on it for a couple of weeks. No side effects yet but I hear they may take a while to kick in.
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I'm coming up on three years, which I consider pretty long to go without any problems -- slowly starting to accept the fact that I may actually have the worst behind me, although I will likely always be nervous the night before and day of my annual mammograms and ultrasounds. I am still pre-menopausal (mid 40s) and happy with my decision to opt out of tamoxifen but each of us must make the best decision for our medical situation and risk aversion level.
*edited to add that I just read OldOak's post and I loved it!! Thank you for posting, most folks drop off these boards once they're non-problematic anymore, wonderful to hear the good stories!
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I am curious about long term survivors with DCIS and found this thread. Of course since it is from 2012 it is considered old. However I would love to hear from everyone who posted because they are now 8 years out from the original thread. I am hoping everyone is thriving.
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I was diagnosed 15 years ago with DCIS-Mi, so Stage I rather Stage 0 because of a tiny microinvasion of IDC. I had over 7cm of high grade DCIS with comedonecrosis. I'm still here.
Every year approx. 60,000 women in North America are diagnosed with DCIS. Because DCIS is non-invasive, those who do succumb to breast cancer almost always have either an invasive cancer recurrence or develop a new invasive cancer, unrelated to the previous DCIS diagnosis. The long-term survival rate for someone diagnosed with DCIS falls in the range of 97%-99%, depending on the study. So in the 8 years since this thread was started, there are almost a 1/2 million DCIS survivors in North America. Most of them are off living their lives; you'll only find a handful of us hanging out here.
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