A hopeful message for the recently diagnosed

AlohaGirl

2009 was a tough year for me. I had my first mammogram (at age 40), it was suspicious. I was ultimately diagnosed with DCIS and had a lumpectomy and radiation followed by five years of Tamoxifen (which I just finished this week). As I have reached the milestone of finishing the Tamoxifen, I have been reflecting on the last five plus years. I remember all too well how frightening and difficult it was when I was first diagnosed. The treatments ended up being not so bad for me, but of course I didn't know that going in. And the fear that they would find something else persisted. I still get nervous about doctor's visits, but I wanted to send a message for the people who are at the beginning of the process that at some point it did get better for me and the cancer became something that happened to me a while ago rather than something that is always on my mind. I have been very fortunate. But I wanted to let folks know that you can get to this point, as impossible as it feels at the beginning. Sending good wishes to you all.

MagicalBean

Hi AlohaGirl,

Thanks for your words of encouragement, and congratulations on reaching this milestone. Uncertainty will probably nibble around the edges forever but your post chased it away for awhile. Thanks for that.

Moderators

AlohaGirl-

Thank you for your kind and encouraging words! We know how much a message like this can resonate with someone who is newly diagnosed or waiting on results, and we appreciate you sharing your story!

The Mods

april485

Thanks for posting and congrats on 5 years and no more Tamoxifen! Now, back to your regularly scheduled life with a hope for a long one with no more BC!

lovestorun

Thanks Aloha, and congrats!

 

MillyQ

this is very encouraging, thanks for posting. Im recently diagnosed with low grade DCIS but have not decided whether to go ahead with surgery. My doctor suggested tamoxifen as a preventative and I'm considering that on its own. How was your experience with it?

Disneygirl44

Hi Aloha Girl,

I just have to say, last January was my first mammogram at age 40. Also DCIS and lumpectomy and rads. Thank you for sharing your good wishes and Congratulations on your milestone. I am amazed at how far I have come and I am not looking back. Of course, I am reading the boards...

proudtospin

hope I can offer some hope as well, DCIS in 2008, lumpies, rads and ended 5 years of Aromasin and now onto to life

6 1/2 years out and clean and living life again but trying to eat healthy and workout more and reduce stress

leenso52

My journey began 4 1/2 months ago with a slightly overdue suspicious mammogram; micro calcifications in clusters and one in linear formation.  Stereotactic Bx not successful as it caused bleeding, hematoma before 2 suspected areas could be sampled.  Had to wait 3 months for healing enough to have repeat mammo end of Oct.  Had another stereotactic bx in mid Nov. for one area only; DCIS high grade, ER+, with necrosis,  and breast conserving surgery last Thursday , Dec. 4th, 2014.  Final path report was relayed to me by phone by my surgeon last night.  No surprizes, still DCIS, high grade, stage 0.  My surgeon prefers to call this "Hi risk, pre cancerous changes. "  Incidentally, the second area not bx in Nov. but removed with surgery came back benign. I was shocked and pleased by the minimal amount of tissue taken and am so relieved I do not need to think about further surgery, reconstructive or otherwise.  Going back to work tomorrow, mild to moderate pain but I am an oncology nurse myself and my work should not be too strenuous.  I meet my MO Friday for discussion about Tamoxifen, and my RO on Monday to discuss {need for} radiation.

Making the transition back from patient to oncology nurse is not the problem.  Its transitioning back from post op patient with dx DCIS (pre-cancer?) to understanding where I, and my future all fits in to the rest of my life.  From reading so many of your posts it's pretty clear that that's a high expectation on my part!  To transition in less than one week.  Really, a mere 24 hours since my surgeon called to say no IDC, no need for further surgery.  And I'm confused because many posts I have read have been by women with same diagnosis and yet more than one lumpectomy, same breast, in fairly quick succession.  Why was this necessary?  Will my doctor decide for some reason to do more surgery?

And am I indeed a breast cancer survivor if my diagnosis is DCIS???  My years as an oncology nurse only serves to confuse me on this one.  Am I on a breast cancer trajectory or not??  I know my treatment from here on in, unless something changes, is more preventative than actual treatment of cancer.  Have been having trouble understanding this since my doctor told me of original diagnosis in November.  I understand the difference, between invasive and non invasive.  I get that.  But if DCIS can, especially high grade with necrosis, (sometimes) transform into invasive, does that not make it as I always thought, and is still referred to by my Fellow Warriors as early stage breast ca?    Or am I not officially a Warrior?  And why is this so important to me?  I think that after all I've been through for the past 4 1/2 months I am entitled to Warrior status!  What says you, Newbies like me and the more veteran Warriors out there?

Thanks!

ballet12

Hi Leenso, I responded to your other post regarding the multiple lumpectomies.  If you have clean margins, you shouldn't be called back for more surgery.  About the "breast cancer" trajectory, my take on this is that the surgery and the radiation treat and most likely eradicate the DCIS.  The Tamoxifen is for prevention of recurrence and prevention of a primary in the other breast.  With high grade (or any DCIS) there is a recurrence risk, but unlike aggressive early stage bc, such as triple negative stage 1, etc., the high grade DCIS is essentially treated and not likely to recur.  Of course, on a breast cancer website like this one, you will read of women in whom  there is a recurrence in the form of DCIS or IDC. Those with other risk factors like BRCA positive patients, are obviously more likely to have a recurrence, and if one's recurrence risk is 10 percent or 15 percent, etc. someone is still going to get that recurrence.  My risk, since I chose to opt out of the hormonal therapy, is certainly not near zero, but it's tolerable to me. I used the figures generated from the MSKCC nomogram (on their website) to get an estimate of my recurrence risk.

percy4

Well. It's only been a year for me. Still; I was able to say at the Thanksgiving table "I am thankful that I was diagnosed one year ago, this month, and as far as is known, I am just fine and done". I do get that recurrences happen mostly in the first few years. However, I was lucky enough to get clean margins (not as wide as I would like, but clean) the first time, only rads, and no chemo. I exercise as I should, and I am looking forward to a Life without a new BC in it. Comfortable with all of my (extremely researched) decisions. And there you are. Happy Holidays! xx

have2laugh

Alohagirl- Congrats for completing Tamoxifen! I am about 6 months into Tamoxifen. I was really concerned about side effects. I feel surprising fine-the big hot flash I felt for sure was right around the corner hasn't arrived yet!  Now if I could just get my uterine lining to cooperate I could do 4 1/2 more years! I noticed you and Disney were diagnosed at first mammogram. I was diagnosed with first MRI at 43.

Leenso- I know there is a lot of controversy with DCIS-whether to watch and wait, over treatment, is it early cancer, etc. In my case, what was thought to be a small area actually turned out to be multifocal and larger area. With two sisters with IDC in their mid 40's, I am happy with my choice to start MRI's due to high risk and very dense breasts. Maybe my DCIS would have stayed in ducts but it was not a chance I was willing to take. One thing I have learned-we are all different, even with similar diagnosis. I had a pretty involved second surgery that still resulted in two very close margins, difficulty with radiation effects , and have continued lymph edema in the involved breast-which I am able to work with and keep minimal with simple changes. My second sister with IDC had very small area removed and no side effects from radiation. She was able to keep up with her normal routine and had very little effects. I figured with DCIS, I would have an easier course but that just wasn't the case. My expectations were unrealistic for my situation- a point my surgeon made early on that took 4 months to kick in! The area and the amount of tissue removed has implications for how you tolerate radiation and your recovery. I am six months out from radiation and only a week since skin on nipple finally healed but that was the site of my DCIS. I am sure my husband thought I was crazy to be so excited to have pink nipples again-but it felt like such a big step to the other side of feeling recovered and moving on.

 Do I get the pink t-shirt? Some say yes and some say no. Like you I am an RN and when I was going through the worst part of my journey, a fellow nurse remarked to a mutual friend-"she knows that DCIS is not really breast cancer, right?" My reply- if this isn't breast cancer I'd like the 1/4 of my breast back and I'll skip the rest of this radiation! So I guess the answer for me is, I consider myself to have had early breast cancer. The classifications may change, they may shorten the length of radiation required, research may reveal new tests to more accurately predict which types of DCIS are more likely to progress-there is  a lot out there. My main concern going forward is keeping an eye on what's out there for my daughters. For now, I look forward to a happy healthy year! All the best to you.

Shellies

Thank you and CONGRATS!!!

I am 3 years out and CONSTANTLY consumed by fear!

It's nice to know there is hope that the overwhelming terror may abate someday... <fingers crossed>

Enjoy your life!!! YAY!!!

percy4

I am not consumed by tests. I investigated a LOT. I questioned a LOT. SNB, etc. I am still really unhappy about future screenings. I see, here, that a LOT of places give screening ultrasounds. My HMO; a GREAT one, supposedly, does not, and they have all kinds of studies to back that up. I want US in addition to mammo, to have both things. Mammo isn't enough, but I am not going to get US unless I find a new thing. So. I will "find" a new thing, whatever it is. A mini-lump , or a "ridge", or a "feeling". I will find it and get a US every year. So; so sad BS that one has to "work" the system, but, as I had a really early BC, and am deemed to be "cured" (I know some people don't like that term), all I I can have is the best screening, and I intend to get it. One way, or another.

Larkspur

Hi, everyone,

This is my first post on this site, although I've been lurking here since I got my diagnosis earlier this month. I'm already very appreciative of the friendship and support in this online community.

I will meet with a breast surgeon next week to discuss my options; the waiting period, while frustrating (as you all know), has let me do a lot of reading and research on DCIS, including articles on its possible overtreatment.

It's hard for me to verbalize these thoughts, but I can't help feeling that I, and no doubt many others, have to some extent been placed unnecessarily on what I've started thinking of as a conveyor belt of fear: in my case, starting with the radiologist who met with me immediately after the follow-up mammo to an abnormal mammogram and urged me to have a biopsy RIGHT AWAY, to the young woman who arranged the referral who looked worried and wished me good luck, to the form letter from the surgeon who performed the biopsy, which said the findings were MALIGNANT, in bold-face! (Luckily, I'd already received this unwelcome news over the phone from my trusted and respected primary care doctor, or that letter would've sent me into major panic mode.) It wasn't till I found this site and did further reading here and elsewhere that I began to understand that while of course we need to take DCIS seriously, it's hardly in the same camp as, say, late-stage pancreatic cancer.

I don't believe that there's some huge evil conspiracy out there among Big Medicine and Big Pharma to terrify us into financially lucrative overtreatment, but it seems as though many of the health professionals I've encountered so far have been needlessly frightening, as if breast cancer--and cancer in general--aren't already scary enough. Are they trying to startle people who may be in denial into taking action, or are they just clueless?

Nash54

I've seen cases on here where the biospy indicated DCIS but once surgery was done and path reports comes back it's actually IDC. I think the concern is always to get the cancer before it has a chance to spread.

BLinthedesert

on my way to 3 years - consider myself cured. Still have my follow-ups (every 6 months like clock-work I alternate MRI and mammogram), but don't dread them, just do it. Feel the same way about this as I did about having a few non-melanoma skin cancers ... a nuisance rather than a disease.

Have a much different perspective after being diagnosed with a chronic autoimmune disease - since, for me, this disease has overtaken my life in ways that I never was prepared, and will require life-long therapy (which throws me into the severely immunocompromised category). Good news though, I still am a runner (sort of), and consider myself lucky every day

Best wishes BCO women!

bernall

I am relieved to see this post. Getting ready to start radiation and I've was fine until my first consult with Rad Onc. Ever since that day, I am really sad and cry easily. It's usually after kids are alseep or when by myself. I prided myself on being "totally ok" with my diagnosis and being really strong. I am thankful that it was detected early and know that I'll get through radiation hopefully without too much discomfort. Just can't get out of this sadness funk. It is getting harder and harder to keep this mask on. Thanks for posting this. It gives me encouragement and surely does same to others.

SC_Coqui

I had a few people question my choice to get a mastectomy. I had grade 3 DCIS in two large locations, and one was right by the nipple. I'm young and have nothing in my left breast - for now - so we thought that the mastectomy would be the end of it (DX in October, MX Feb. 3). Well, I came back node positive and they found a 3 cm invasive lump in my breast that wasn't found in the original mammogram or follow up appointments - including the pre-op appt two weeks ago.

We went from DCIS to Stage II cancer. Had we taken the "watchful waiting" approach things would have been much worse. There was a huge sense of urgency from my doctor and I didn't understand why because DCIS was seen as being so common and not that big of a deal. My surgery last week and the return of the pathology report made me understand his urgency. It's a wake up call to those that see DCIS DX as not a big deal.

ballet12

Hi SC, what a shock that must have been.  Yes, DCIS is a real potential threat.  It is unusual to find a large IDC tumor hiding with the DCIS, usually it's microinvasion, not a 3 cm mass (yikes).  I wish you luck with all of your treatment. 

have2laugh

SC Coqui-

   You are very fortunate you followed your gut. I am sorry your decision wasn't supported by all. It is certainly hard enough to make these choices without the second guessing of others. Wishing you continued healing!

mamabecerra

I am 35 and had my first mammogram 2 weeks ago because I found a lump. My mammogram came back with 2 questionable calcification spots. Sent for a core needle biopsy on the 2 spots On tuesaday. I found out that I have dcis. I go next friday for a lumpectomy and a lymph node removal on my left breast. Super worried but have a positive attitude beings I have 4 kids at home.

Nash54

Hi mamabecrra....so glad it was caught early and is DCIS. It is so scary to hear those words BC. If you have questions about your LX come one over to the lumpectomy lounge....we've all been through it there is lots of great advice and support.