Just need to vent to those who understand
I am sure many of us have had someone along the way tell us to not worry because it was "just" DCIS--I know I have. I think once you have had DCIS and have been treated you shout not have ANYTHING remotely concerning happen to your chest or reconstructed breast, right?? 
Not a pimple or a mosquito bite or a single benign broken blood vessel I had a rash that would not go away on my surgical DCIS side. It was horrendous. When I look back at the pictures I took to monitor the progression I am proud I didn't outright panic. I guess history of DCIS with Mastectomy or not I am a rashy person. I wish the rashes wouldn't pick on my reconstruction. I have a new problem- small bug-bite like welts appearing on my scar and anywhere on my reconstruction. It started with one the a fews later, one more, then yesterday two--one right at the end of my scar. Today came the one right on my scar and two above and 2 below. Other side? Nothing. So it has been a year since diagnosis, and 4 months+ since my last surgery and I was just starting to bask in my new normal. My first unilateral mammo not until Feb I could just be. This month I had lump checked out by my surgeon--definately there, feels like scar tissue-recheck in 3 months. I was ok with that. Last week, a new bump appeared about an inch from the one we are watching, then this. I know all things will likey be just fine after all it was "just DCIS", right? I just wish for normal. No lumps, no bumps, no red splotches, no pimples. And of course--no cancer ever
Comments
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I don't know. I'm pretty new to this and have a small invasive cancer but also have calcifications that are (from what I understand so far) DCIS in the same breast. Perhaps if they'd found my DCIS sooner, that's all I'd have. DCIS is a precancerous condition, so if they don't find it or don't get it all, it can turn into cancer. I guess even if I "just" had DCIS I'd still be mighty danged worried about any changes in my breasts.
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Yep, mine was "Just" DCIS too, Grade 3! I know I was fortunate, fortunate it was found, after it was missed, in the previous mammo, but when someone who hasn't been there, says it was nothing, "Just DCIS" I say "oh yeah, it was "only" a breast, it's ok, I still have another one!"
Kimberly, I am sorry you have these ongoing issues and I hope they clear up soon.
Labelle, I know just what you mean too!
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same thing today, but only one appeared over night. It is right at the end of my scar like a couple days ago. You can't see where yesterday's were anymore mostly. This one is bigger than is was before and less circular, more triangular. Dark pink. What the heck are these? I know it's not Cancer. Cancer doesn't come and go. It's distrubing. I took an antihistamine. We'll see if that helps. I'll call the doctor Monday if it keeps up. Which dr do I call? Family doc, Onc, PS, or General surgeon?
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I am having the same problems bums, pimples, etc on my reconstructed side. My lift side everything is fine with my skin. I hate it and it drives me crazy. I would say try your family Dr. and see what they say and if not happy with those answers maybe try a dermatologist?
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I had a BMX in June. In August, I had a fairly bad rash on my "DCIS" reconstructed side. I actually went to the oncologist for a standard appointment, and he seemed a bit alarmed by it. I actually told him I thought it had to do with the tissue expanders. And, that I would go to the dermatologist if it didn't clear up soon. In the meantime, I did go to the PS, and he agreed it was due to the tissue expanders. It did go away after a few weeks.
I have since had my exchange surgery, but I do notice i continue to get more pimples and such on the previous cancer side than on the healthy side.
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I did have some people who were of the thought process "it's only DCIS"..........OK.....but I had two stereotactic biopsies, wire inserted for first lumpectomy, then a second lumpectomy because the margins didn't clear, then 30 rads and now 5 years of Arimidex........JUST DCIS. I get it though, but DCIS is just as scary for us as any other cancer.
WOW.....I just vented. Thank you!
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Yep, Dogsneverlie, "Just DCIS!" Couldn't agree more, vent away!
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I just got my diagnosis today - DCIS stage 0. I feel incredibly fortunate. I am 49 with no family history of BC so theoretically didn't need to start having mammograms til next year. I had a physical in July and was told the tissue in my left breast was denser than that in my right but it was probably normal. The mammogram bus (for screening only) was in my community in August so decided to get checked. I was told that since it was my first and they had no baseline, I might be asked to come in for followup - just precautionary. I got called for a 2nd mammo, just the left breast, then soon after was asked to come for a biopsy. That was just over 2 weeks ago. If I had waited until after my 50th birthday to have my first mammo, who knows how much it would have advanced. I go Monday to discuss further with the Dr. Although I knew all along there was a chance of cancer, it still comes as a shock. It's not "just" anything! I am a nurse and know the prognosis is very good - doesn't make the diagnosis any easier.
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Sadie14-
Welcome to Breastcancer.org, we're so glad you've found us here. There are many women here who've been where you are right now, hopefully you're able to find the support you need! Please keep posting, you're in our thoughts!
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Well said Dogsneverlie. My surgeon said that DCIS is considered by many to be "pre-cancer" because it is locked in the ducts and has not spread. But, it IS composed of cancer cells. And cancer is cancer. "Just DCIS", my fat Aunt Fanny.
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I will never understand the agy bagy that goes on about DCIS. I know, I know, some DCIS Dx are perhaps over treated, but it should never be underestimated, in my view.
DCIS can and does, through changes, become invasive in some people. There are some, who believe it is the beginning of all, breast cancer.
When I was Dx and asked how long I had, to decide what to do, I was told to do it "sooner, rather than later, in the next month would be good"!
I was told I had a "form of breast cancer" and it wouldn't be till the final pathology results were in, that I'd have the final Dx of Pure DCIS, or in fact, an invasive component. I was told it was a "Good" Dx to have and compared to others, I am forever grateful that mine was Pure DCIS, but I still had almost 3 months of paralyzing fear, from call back to final Pathology. Like it or not, I was forever changed and I lost a breast, to boot!
Just DCIS! I don't think so!
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I have to chime in here that the whole "just DCIS" thing is one of my pet peeves! In my opinion, cancer cells are cancer cells so why do they try to label DCIS as "pre-cancer"? My brother had thyroid cancer that hadn't spread and was contained in his thyroid gland, but they didn't tell him it was "pre-cancer" it was "cancer." I was very glad that the radiologist who gave me my initial DCIS biopsy results warned me that I wouldn't know for sure until after the surgery and the final pathology came in if it was all DCIS or if there were any invasive cancer. Unfortunately, I did have 4 small invasive tumors. The warning from him helped me be prepared for the results.
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Diabetics get the same spiel, it's pre diabeties.
No
Either it is ca or D
It's like being pregnant. You are, or you aren't. No pre about it.
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Haha spookiesmom, I was actually going to write It's a bit like being a "Little bit Pregnant!" lol
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I do sympathise with those of you who have been diagnosed with DCIS and then told it isn't proper breast cancer because it is non-invasive. I had to see an endocrinologist earlier this year about adrenal fatigue and a request to go on T3 as well as T4 as I don't have a thyroid or ovaries after a total hysterectomy. Bionic really. Anyway, he argued with me that I hadn't had proper breast cancer so I stood up and shouted him down saying why did I have invasive surgery and told to have radio then! He shut up (and gave me the px for T3, probably thought hey I'm not going to mess with her).
I had thyroid cancer when I was pregnant with my second child and was told it was a 'good' cancer to have as it was also non-invasive. So I know all about doctors saying it's not proper cancer cos it's not killing you. Fast forward thirty years and I get a diagnosis of DCIS 5 high grade totally out of the blue after a routine mammogram in 2012 (I was 59). Wire guided excision and back home, taking a few weeks off work but feeling in total shock for several months, refusing radiotherapy, joking with the oncologist that I would save that for next time as I was told once you've had radio and it comes back then you can't have it again. Anyway the oncologist agreed that it would be a belt and braces approach and could cause more trouble as the DCIS was slap bang over my lung and could have caused some damage there. I hid from the breast clinic for two years refusing to go for my mammo follow-ups - too much to do, a full time job, new grandchild, aged parents with health and care problems etc.
So two weeks ago I get a recall and agree to go what the heck, I'm feeling stronger - the surgeon says I have recovered well, I even have my boobs photographed for medical journal to show docs and other women that you can still look pretty perky after DCIS surgery. I also agree to have a mammo - and guess what? It has come back! Another round of core biopsies and goodness knows what to face. So scared I feel like hiding away. After all, I may be likely to die with it rather than from it. Can I face all that again?
The worst bit first time round was the fatigue which other members have experienced. The survivor guilt when all around at support groups are those going through far worse than I. I don't know whether I can face all this rigmarole again......
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anneldee - so sorry to hear you are facing this again. Please hang in there! There is lots of great support on this site to help you through!
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Anneldee - I don't know really what to say to comfort you except to say that Cancer SUCKS but there are many wonderful women here that are willing to support you through this journey.
Can you do it again? The answer lies within yourself, but my guess is that you can. Gear up, face your cancer head on. You will find the strength for all of the waiting, doctor appointments, and more waiting. You will find the strength for surgery and recovery and treatment (if needed). You will find the strength to get up each day and find the silver lining.
While you are finding the strength each day, remember that you are human and it is okay to cry, laugh, yell, be angry. Allow yourself to feel what you are feeling, but then find the strength to pull yourself back up.
We are here for you as much as we can be!
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This "just DCIS" annoys me to no end too. I got really testy on the Stage III board about it and then felt kind of bad cause they really are always worried about mets and waiting for the other shoe to drop.
Here is the link to the post I got testy in and the actual post in quotes.
"As a "Just DCIS" person, I totally get what you are saying here but want you to know that although we are "pre-invasive" the cells are still a malignancy unlike true pre-cancers like ADH/ALH etc. I had two surgeries (lumpectomies as the first one did not get a large enough margin), radiation and take exemestane for five years after a painful wire localization. We still are treated similarly to early stage invasive cancers and in fact are treated EXACTLY the same as stage one with low oncotype scores.
Most IDC begins FROM DCIS (although not all) that gets growing so if it is not removed, it is usually (but not always) a matter of time before we are right were you are. The reason some want to change it to a pre-cancer is the fact that many women opt for bilateral mastectomies which some doctors think is over treatment for this. I feel that if a woman wants to have a mastectomy (double or single) that should be HER choice.
While I understand you being upset that a woman with DCIS was the face of Komen, (and I totally agree with you about this as this was not what they should have used) please understand how many of us with a DCIS diagnosis feel when some people act as though it was no big deal for us. I can tell you first hand that it was indeed a big deal and I am reminded of this daily when my joints ache from the aromasin and when I look at my severely indented and deformed breast which is brown now from radiation.
I know Stage III is a very serious diagnosis of ANY cancer and I pray that all is well with you for the rest of your lives. I know that you are always worried about mets and I know that DCIS cannot metasticize so I can't understand your situtation truly. But, we were all given a diagnosis of breast cancer and I know I speak for many of my DCIS sisters when I say that we are getting a bit weary of being told we did not "have cancer."
Warmest regards. Just giving you a different perspective and I mean NO disrespect to anyone with a higher stage diagnosis. "
https://community.breastcancer.org/forum/67/topic/825862?page=1#idx_13
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April485: I do not think that you "lost it" at all! That was very well stated and with a lot of tact and sensitivity. I have been trying to stay off of these boards and "move on". But I keep being drawn back as people like yourself express exactly what I am feeling. This thread really nailed how I am feeling. DCIS is a bit of a bugger. I feel that I should be thankful for a "good" dx, but then feel stuck or unable to move on as the lingering fear of a recurrence follows me. Just when I start to feel normal and forget for a moment about the past year, it hits me again. It is like I am afraid to really let my guard down. It is like I need to fight this by eating right, exercising, cut down on the wine (hardest one for me as I loved my wine), etc. etc. If I don't do everything right, I feel guilty. I feel guilty for feeling afraid, I feel guilty for only having DCIS. As a counsellor myself, I get all of this, but just feel stuck. I got it all out the other night with DH who was so wonderful and so supportive. I think it may just take time. I believe that I handled the surgery and complications of a positive margin and thus radiation very stoically. The hard stuff seemed easier than now. I want to leave all of this behind me, but it follows me and even haunts me. Just a nagging fear, not overwhelming or terrifying, just enough to change me and I want me back. But this just may be the new "me".Anneldee: Hoping for the best possible results and you will be able to do this because you have to and because you can. That is what these boards offer and why I cannot quite leave. Women here get it and offer the best support available. I will hang around awhile and keep my eye on you (((hugs)))
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anneldee, I'm so sorry you are having to go through this again but you can do it. It won't be fun, it won't be pretty, but you can do it. You have stared down this beast before and you know what to expect. We are here for you. Take care!
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Hi TB, good to see you!
April, I thank you for that post! Well written and well done!
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Had my second lumpectomy (first one 1 month ago) plus IORT yesterday...I had a bit of a breakdown before surgery which was embarrassing. Got very overwhelmed thinking this all will just keep going on and on...tests, biopsies, surgeries...and believe me I am grateful that my diagnosis is DCIS and I know I am fortunate that it was found early...but I truly came unglued. I have been upbeat and positive since my diagnosis on 9-11-14 (easy to remember that date!) but it all just crumbled and the whole crew at the hospital thought I was psycho. Glad it's over. I think my husband will now forever question my emotional stability! Thanks for letting me vent.
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Hey NoCuteName, don't give yourself a hard time and come here and vent whenever you like. We all process this stuff differently and we never know how we will actually react to this kind of stuff, that is all new and scary.
I am betting the whole crew at the Hospital have never been in this situation and have no clue as to how they'd react, so let them think whatever they like, but you're the one going through the experience, not them!
It is very early days for you, your body has taken a big hit and mentally, it is a real challenge for all of us.
Yep, I am grateful for my Dx too, but I still lost a breast and I am still forever changed, because of it.
Let us know how you're getting on!
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Thank you Ariom. I sincerely appreciate your kind words!
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Well said, April. While I'm thankful that my cancer is DCIS and not invasive, it is still cancer. It carries all the dread, panic, and disbelief that any cancer DX would. It's not trivial. It's an evil thing that has so very many forms. We are all in the same leaky boat and there is no room for one-upsmanship.
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