Diagnosed DCIS again 3 years later - so different this time...
My first DCIS diagnosis in 2011/12 sent me straight to the BS for a lumpectomy, and then a simple mastectomy of my right breast because of unclear margins. At that time I was new to DCIS and my mind was spinning with research, appointments, treatment options etc. In the end I was so very grateful that no invasive cancer was found, but I had (and am still having) a difficult time adjusting emotionally to my single mastectomy. I opted for no reconstruction and thought that I would get used to having a single breast. I thought that the loss would not affect me as much as it obviously has.
Now 3 years later, I was sent for a core biopsy of my left breast because of suspicious calcifications, I get the call last week that the results are positive for DCIS. I do not have my pathology report in hand yet, but was told to expect a phone call this week for an appointment or detailed discussion of results and treatment plan. From what my family physician told me, this DCIS in my left breast is of a different character, the calcifications are more sporadic and increasing around all parts of my breast (with my first case of DCIS they were confined to a small area). From the core samples that were taken there is no sign of invasion. I was told that the different cores had different grades of DCIS and that there is concern for the other untested areas of my breast, that invasive cancer cannot be ruled out yet. Needless to say I am very anxious and waiting impatiently.
Right after getting this diagnosis I confidently told my family physician that my plan would be to get another mastectomy, that I had been preparing for this day ever since I lost my first breast. I just want to be done with all the followup mammograms and fearful waiting. My husband is supportive of this decision though he knows what grief I have been experiencing since the loss of my first breast. But we must wait to hear from the specialist team at the breast clinic. Sounds like more diagnostic testing may be in order before surgery ie. MRI, CAT scan, liver ultrasound etc. Last week I was in control and confident, and now my emotions are turning into anger and sadness, and at the same time I'm feeling very guilty... maybe this wouldn't be happening if I had made more of an effort to change after my first DCIS diagnosis, I know I need to be more physically active on a regular basis, I know I could be making some better food choices, and the big one - decrease stress. I know we are not supposed to blame ourselves but I cannot help but wonder. Thank you all for listening. I'll be here and looking forward to hearing your stories!
Donna
Comments
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I'm sorry you're having to go through this again--and so soon after your first diagnosis! At least they are finding it at a relatively early stage. Hopefully you'll be able to get through this one and eventually be done with it!!!
And don't blame yourself! There are people who are in tip-top athletic condition who eat everything that's only good for them, and they can still get cancer. While there are some links to exercise and diet, I really don't think those are things that really cause cancer... It can tip some things, MAYBE, but on the other hand, maybe NOT. I think the reasons most people get cancer are a mix of genetic and random changes in cells. At least that's what I've been told.
I know how it is, though... I was thinking at some point that maybe I'd been eating too much soy or something! But no one has proved that is a direct factor... So, basically, I'm not going to worry about it. If it's just my stupid genetics--there's nothing I can do about it --- mean, yeah, it would be better if I exercised and ate right, but that would not necessarily make anyone cancer-proof!
Just concentrate on doing what you need to do to take care of the cancer. That's the important thing. I wish you the all the best, of course!!!
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Donna,
I think a mastectomy will put your mind more at ease. I too had calcifications in a small spot but selected to do mastectomy. After the surgery, there were two other 4mm spots that did not even show up in MRI were discovered. My breast surgeon told me that she is glad I chose mastectomy. I had IDC (not DCIS). Don't blame yourself for things you haven't done. There is no guarantee if they would even make a difference. Try the best you can and be at peace. Be strong for all the upcoming procedures and take care.
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Donna, I am so sorry that you are having to make more choices, especially when none of the results are what you want in the end. But you will just have to see what the scans etc. find and go from there. We all do the best we can with the situation at the time. I know that I could try to blame all things that have gone under the bridge, but that doesn't do any good, reduce any stress, or even change today. I hardly think passing on the chocolate bar, soy crackers, or martini would change anything. I have today to deal with, and I will do my best, but sometimes we have to let it go and remember that sometimes even our best is just not enough. I hope you take it easy on yourself, you deserve to make the best decision possible. Good Luck, I wish you the best!
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Hello Donna-Dew, Welcome to BCO. I am so sorry to hear how this has panned out for you. Firstly, there are many of us here, who have been Dx with DCIS, some with another Dx like you and there is a lot of very interesting information about both DCIS and about reducing stress and how to alter our lifestyle if that is something we want to explore. Please don't beat yourself up and feel guilty about what you maybe, should'a, could'a, done to prevent this, there are no guarantees. There are many, many women here who have lived the lifestyle you mention and have still ended up here. Absolutely, trying to cut down on stress, eat healthy and exercise is a great and positive lifestyle change to aim for, but truly, leave the past in the past and move forward and be kind to yourself:)
I was Dx with high grade DCIS in 2012. I decided to have a Umx and SNB, no recon, but never considered removing both breasts.It was simply that in good conscience, I couldn't remove a healthy body part. I figured, if there was going to be an issue with my other breast, I would handle it if I had to an I would certainly have another Mx in a heartbeat, if there was any hint, of a repeat performance! I have 6 monthly checks with my Surgeon and annual mammos and u/s. For me, the transition has been easy, I don't have an issue with being a Uni and wearing a form, is just part of what I do now.
I wish you all the very best and hope you will stay on the boards, chat to others who will share their experiences and let us know how you get on. Hugs to you!
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Beachbum, sometimes I wish there was a "like" button! This will have to do!
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Donna Dew,First , sorry for all this happening to you. I wish only the best for you.
As for bad diet and lack of exercise being the culprit- Girlfriend erase that from your head.
Science does not know what causes BC . You can not voodoo the risks away with food, activity, supplements , herbs, crystals or positive thinking. I am sorry if I offend some that believe in these things but science is science and none of the above is science. Perhaps if you had a better diet and were more active you would feel better, you would certainly recover faster but you can not keep the beast leased that way. You have not failed in anyway whatsoever.
Keep us updated.
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Donna, it's ok to be angry and sad. I think we have all been there. But don't blame yourself. Sure there are things we can do to try to reduce BC or a recurrence, but athletes and vegans and women who have super healthy lifestyles get BC too. Scientists and doctors still don't know enough about the disease to know what causes it or why some of us recur and others don't.
As you can see from my bio line, I recurred after 12 years even though I had a BMX for stage 0 DCIS.
I hope when you get more info it will give you a clear direction as to what you need to do next. (((hugs)))
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Thank you all for your understanding and support!
)April25, yes definitely trying to focus on the fact that this is a relatively early stage discovery and taking it one step at a time. Once I have a test and treatment plan I think I will be alot calmer, right now my mind is trying to process all the possible scenarios... invasive or non-invasive, learning that cancer can recur even after bilateral mastectomies, thinking about how my family physician didn't make sense when she told me that her reading of the path report said non-invasive but when I asked her for the DCIS grade she said "different for different cores, some 1a and 2b"... (or 1b and 2a not sure) and as I now understand it these grades are reserved for invasive cancer. Sigh. Oh well, it is what it is, but I will feel alot better when things start to make sense... lol!
New2bc, absolutely, from the get-go of this recent diagnosis with such widespread calcifications I decided mastectomy. And my family physician agrees, though she said to expect to have a few more diagnostic tests first, and that these will provide more information for the subsequent surgery and treatment plan. I want to be strong and have started planning for some long over-due self-care measures, something as simple as daily walks for fresh air (used to tell myself I have too much to do, who has time!) and going to book a hot rock massage (it's been years! and I really do carry all my stresses in my shoulders and upper back). If it's one thing this experience does for us, and I say that with great hesitation, but it turns us back around to give ourselves some much needed loving attention, wish that it didn't take something as horrific as BC to finally get our attention. However we will have peace with what it is and warrior on at the same time!
Beachbum, I know right? How can I blame this on so many things that I enjoy, I wouldn't change a thing honestly... I will, and forever will, enjoy chocolate from time to time... a nice glass of shiraz after a particularly unforgiving day... and milk? ...sometimes I drink so much milk my husband calls me a nursing calf. I might actually cut back on milk though, from what I understand commercial milk is loaded with hormones so who knows. If anything can be blamed or seen as contributing to BC it probably is the stress in our lives which eventually wears us down. We can try to balance our lives and control our stress but ultimately alot of where stress comes from is outside of our control and it just seems to be an accepted part of life. I guess how we react to the stress is key, and maybe when we get a diagnosis like BC we will finally learn once and for all to not give a hoot about the small stuff! I felt like that for a long while after my first diagnosis and then life caught up to me again. Let's see how I do this time!
Ariom, thank you for your story. You chose to have a single mastectomy instead of bilateral for the same reason I did after my first diagnosis. But I will tell you, one of the Onc nurses said to me "why not have a bilateral, what do we need them for now anyway?" Holy cats I was taken aback. At that time I was 48 yrs old and there was nothing wrong with my left breast. My right breast had DCIS Stage 0 Grade 2 confined to 5cm and my BS told me an acceptable option would be to avoid the single mastectomy if I wanted and just have radiation because of unclear anterior margins after the lumpectomy. I quite liked my breasts and it was hard to part with one but it was absolutely the right decision for me. The problems I continue to have with my single mastectomy and no-recon relate not only to emotional issues but also to post-op issues. I believe if I would once-and-for-all address these physical issues I might adapt better and be more emotionally ok with my new look. My BS was wonderful, but I am not entirely flat (as I had wanted) and I have a very uncomfortable dog ear under my arm. I kind of gave up on trying to look pretty underneath (no lacy bras or lingerie). I find that if I can just look even and be comfortable in my clothes that's good enough. But it's very difficult. I gained some weight and now my silicone breast form is not a match for my other breast though my husband says it is not noticeable. And the dog ear makes it impossible to be comfortable. Not sure if I have adhesions in there, it can be quite painful. As a result, when I am in the house I do not wear my breast form (which causes all-out panic when unexpected visitors call at the door) and when I am in public I get pretty uncomfortable after just a few hours of wearing my breast form in my bra. So I still have the same 2 bras that I purchased 3 years ago after my mastectomy. I'm thinking that it's time I visit the No Recon Forum to see how others have dealt with this. I know I will be talking to the breast surgeon soon and will mention the dog ear problem. In the meantime I have found a great place for buying lacy bras and new more authentic looking breast forms and it is not too far from where I live. I think I owe it to myself and my darling husband to make the investment into some new pretty breast forms and bras after my next mastectomy. If you are curious here is the website address and there is a photo of one of their breast forms on the home page http://www.lisaboriginals.org/
Yes we can do this thing!
Looking forward to getting to know you girls better
Donna
PS. sorry to be so long-winded but it is so good to be finally able to relate to women who understand!!
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Hello RaiderGirl and Bren58, just saw your replies after my last post!
Glad to say that I am starting to get past the blaming, hoping it's a passing phase of the initial grief, but I think I will be processing this new diagnosis for a while. I feel more like a warrior today and getting armed for whatever comes at me this week when I finally get "the" phone call. Then more tests booked. Then waiting for those results. Bren58 wow I just happened to mention in my last post that I had learned of recurrences after bilateral mastectomies, I was thinking I would be "done" once both breasts were gone but I see that is not the case, I hope you are doing well? Both you girls look so amazingly happy in your avatars, like Ariom too, and that gives me so much hope!! I know there will be up and down days. Think I will enjoy this good one even better now!
Thanks for your caring and will keep you updated
Dona
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Donna Dew, I have the same experience as you with the "Dog Ear", mine hurt, zapped and zinged, got caught in my bra and snuck out over the side of my bra. I hated that sucker, but at first, I didn't want any more surgery so I put up with it for over a year. Finally, I spoke with my surgeon about it, he wanted me to go to hospital and have another general anesthetic. He said it would be like doing another mini Mx. I told him I wasn't interested in having another general, could he please do it with a local anesthetic, the area around it was all numb anyway. He finally, reluctantly agreed and I had it done in his office. The first he's ever done that way. It wouldn't be for everyone, but for me, it was the best thing I could have done. We chatted through the whole procedure and he even took pictures for me. I think he enjoyed it. LOL
If you can take looking at the pictures of the transition from Mx through to the removal of the Dog Ear, there are pictures on Erica's site breastfree.org, I am willing to bet, you will be surprised by the difference. For those who haven't experienced that annoyance, it probably doesn't look like much, but for us, it is such a relief. Now, after more time has elapsed, you can't really see where the scar is at all. You may even consider having the revision done during the other surgery. I just wanted to let you know that you don't have to put up with the discomfort, it is able to be fixed.
We look forward to getting to know you too! There are lots of us who haven't reconstructed and there is a lot of information on boobs, foobs and prosthesis and bras and clothing with pockets too. Your link is very interesting, the bras are really pretty.
I have never been to Canada, but many years ago I was working in the music business, at a booking agency and we were looking after a group from Canada who were touring here, called Guess Who. I remember one of the members was from Saskatchewen, he talked a lot about his home. Then in the 90's I worked for an American airline, here in Australia and we ground handled Air Canada, so I met lots and lots of lovely Canadians, some from Saskachewen too and there were a few things I could talk to them about that I learned from that contact so long ago.
I wish you all the very best...let us know how you're doing.
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I thought you might get a laugh out of this Donna Dew, this is my "FoobMoire", one if the great ladies here, named this place, where I keep my MX "accoutrements", it is in my dressing room and yes, every box has a different breast form in it! My Husband tells people that any burglar would run screaming, if he encountered this many boobs!
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Ariom thank you for that photo, consider me totally inspired by your "FoobMoire"!! I howled with laughter when I saw it - and my husband did too when he read your husband's remarks about any potential burglars!! I know what my new hobby will be... collecting foobs and all things pretty so I can have a "FoobMoire" just like Ariom's. Hmmm guess that means I have a foob-fetish LOL!! And yes, I will definitely take a look at Erica's website soon. Right now I am still waiting on news from the breast clinic team, and surprisingly I find the wait is actually tiring me. I'm thinking that my mind is always processing now even when I'm busy doing other things. So interesting to hear of your Canadian stories, and wow that you got to meet some of the Guess Who group! My husband has traveled to Australia but not me yet. A daughter of one of our friends went for a teaching experience in your beautiful land and she has only been back here a few times in the past 4-5 years, she is absolutely in love with Australia. I'm not surprised
Will keep in touch!Donna
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Donna, I am so pleased you got a laugh from the FoobMoire! As you can see, I have switched whatever hobby I may have had before, to Foob hunting!LOL
I know how it keeps playing on your mind, when you're waiting on results, consider yourself hugged from across the ocean!
We just had a guest here from Victoria in Canada and he didn't want to leave, he had a great time and is now just finishing off his holiday in Sydney, before flying home.
Take it easy and I look forward to hearing how you're doing.
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Ariom, I looked at the before and after photos for the Dog Ear removal on Erica's website and was truly amazed!! Oh boy I so want that, what beautiful work. If you can believe it my Dog Ear is even bigger and I think it is because my BS had the drain exiting my skin right under my arm for some reason. Not at all near where your drain was, and as a result I believe I may have some leftover fluid build-up or scar tissue in my Dog Ear. Will definitely talk to this next BS about having the Dog Ear removed, speaking of surgery...
Core Biopsy Test Results and Recommendations:
I couldn't wait any longer for my call back from the Breast Clinic... knowing I have DCIS, and already it has been 2 weeks since the Core Biopsy, I was desperate to find out why it was taking so long to come up with a treatment plan. So I called first thing this morning and lucked into having one of the nurse navigators answer my call. She went right to work and clarified that I indeed had DCIS Stage 0 Grade 2 (4-6cm). The specialist team had apparently reviewed my case on Friday but my BS is now away for a week. Great. The nurse navigator called me back after speaking to another BS in the same practice and got permission to tell me the treatment recommendation. Short and sweet - Mastectomy and Sentinel Node Biopsy at the same time.
So no other diagnostics required before surgery. I have an appointment with the returning surgeon on March 17th and will have all my questions ready. And I'm guessing from there I will wait for the call to tell me the OR booking date and time, and get Pre-op instructions and tests. The nurse told me that right now surgeries are booking the end of March so I am guessing that I will be on the table some time after Easter. Wow, even though it sounds like I have a lot of time to prepare it seems like it's all happening pretty fast now! Have to get the bookwork done for our farm year-end, and get the spring cleaning done early. I know I probably sound pretty confident and in control again but when this finally sinks in I am sure that I will be singing a different tune. I kinda want to get the surgery over with and find out the SNB results asap. THEN I will start the process of coming to terms with no ta-tas... definitely this is going to be so different this time...
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Donna, that's great news, well, you know what I mean, good to know you have a plan. Oh dear, how our perspective changes here on BCO. I have found myself cheering, when someone finds they have a bad infection,when they first thought they may have IBC. It's all relative!
At the very least, you know what to expect, I am so sorry you are facing it again, but it won't be long and you'll be on this side of the surgery, I wish you all the very best! Let us know how you're getting on.
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Donna Drew
High five for you taking your health care power back. Yes, you should call when you need to know something and call and call and call....
Knowledge is power . How come they choose the surgical date and not you?.
Donna, the date will be here soon and then you can concentrate on healing and getting well.
We are all cheering for you.
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Hello Ariom and RaiderGirl, thank you for your well wishes and cheers
With our healthcare system here in Canada, surgery dates are determined by the hospital in collaboration with the BS. There are standards for acceptable wait times for the range of surgeries from elective surgeries to cancer surgeries. I will know more hopefully when I meet with the BS on Tuesday.
Yes definitely knowledge is power, was reading the permanent post on the DCIS forum "A Layperson's Guide to DCIS" an excellent one written by our DCIS expert Beesie.I found it interesting when she said our diagnosis is not fully known until surgery. I mean it makes sense but I didn't really think about it in those terms. Our core biopies only tell us what it going on in those cores not our entire breast. Statistically with a large amount of DCIS ie. 6cm + and with a higher grade, there is a 20% chance of the diagnosis changing to IDC. But I will walk one step at a time for now.
Thanks for getting me thru "just diagnosed"! It means so much, and I hope to do this for newbies too once I am on the other side of surgery
))Take care girls!
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