What If

rc778

Hi All,

I need some input from my fellow DCIS friends.  I was dx'd in Nov 2010 and had BMX in Dec. I've been told by both my BS and Onc that the only screening I will receive now is physical exams every year.  No diagnostic tests, no blood work, nothing.  I don't want to sound like I'm complaining about this.  I am very aware of how fortunate I am but I cannot help to think "what if."  What if some of the DCIS cells escaped during the biopsy or during surgery?  What if the large hematoma that I developed from the biopsy, that started to resolve before my MX, introduced cancer cells to my bloodstream?  My docs tell me not to worry.  They say that I've done the most that anyone can do but I've read postings from amazing women who've had DCIS and then had mets a few years later.  Some without any evidence of microinvasion.  My biggest fear is the not knowing and then finding out when it's too late that the cancer has spread.  Am I being crazy?Does anyone else feel this way? Is anyone who had DCIS and a BMX being followed up with anything other than physical exams?  I don't want to upset anyone but I'm just having such a hard time moving on.  Thanks so much.

CandDsMom

I hear you - I think once we have had a diagnosis, any diagnosis, that we lose the sense of wellbeing that comes when you don't think your body will ever betray you. I am about a year out now and have had 2 or 3 ultrasounds and and excisional biopsy to check various things out. I have been told by numerous oncs and breast surgeons that "well, it's only dcis" and I agree it could have been much worse BUT I still had this major traumatic life changing event happen to me. I also had a BMX, which I definitely don't regret, but things are different now than they were before. As for me, I plan on starting MRIs to check the chest wall (now that I am done with reconstruction) as well as physical exams every 6 months. Is it overkill? Perhaps, but it is what I can live with. According to the Gail model and everything else I didn't need the mammogram which found the micro cysts (birads 3) or the biopsy which found the dcis (biopsy was only done b/c I called in a favor with an onc I know). So I feel like I have been on the margin the whole time and plan on being my own best advocate since I feel like the "evidence" would have failed me. (((hugs))) to you - you are not alone in this...

sagina

My onc said I would have blood work every three months to look for tumor markers.  She said she has been successful catching recurrences with these markers.

poptart

I think the risk with dcis is very low.  There is a thread about the van nuys prognostic thing.  In the study there, people who scored 9 or below had no recurrences after a mastectomy.  Of those who scored 10-12, 10 of 100 develop recurrence and 2-3 develop distant disease.  In the big scheme of things, the risk of dcis is very low, lower than other risks from other things combined.

Sagina, you had 4 cm of invasive triple negative bc so you will have different follow up than people who only have dcis.

I had invasive tnbc in one breast and am currently on 6 months with my oncologist, plus ro 1 per year.  I was seeing my surgeon every 6 months until I had my prophylactic mastectomy on the non-invasive side.  I I had dcis (some high grade with necrosis) and lcis in my good breast.  I was followed up with the surgeon every 3 months, now I see him in 6 months, then he will move me to once per year.  I was told since I have an implant, it would be pretty easy to feel anything from the dcis side.  So, I think if I only had dcis I would probably have the physical 2 times per year.  I will be seeing a doctor 4 times per year (plus my gynecoogist), but that is because I had invasive tnbc.

If you are uncomfortable with once a year, ask for 6 month follow-ups.  How big was your dcis?  If it was on the small side and you had good margins, I would probably feel comfortable with 1 time per year, plus a gynecologist visit. 

Emaline

I think it is very normal to feel this way.  I am newly diagnosed and I am pretty sure, I am never going to feel safe again.  I know I will feel better, but I don't think the fear will ever go completely away.  I work at a nursing home and we have many many many women in their 70's, 80's and 90's who all had MX, and that tells me something right there.

My doctor said he does not refer to an oncologist until after surgery for DCIS and that is only if we decide to do Tamoxifen.  However he also did say, I would be see every 6 months from now on. I don't know for how long, but he made it seem like forever.  This may change once a decision is made regarding course of treatment for me.

shannonW

I FEEL THE SAME WAY and I think it's normal. I voiced this very thing to my hubby last night. He put it in perspective..."Eat good, exercise and STOP worrying." The thing is NOTHING is 100% or guaranteed. We could get hit by a bus this afternoon. I also have to tell myself that in my mind the DCIS survivors are on here now for support and many of the reoccurance sisters are on here for support. BUT there's a HUGE # of survivors ARE NOT on here for support b/c well they've moved on with their lives cancer-free and don't feel the need to be on here anymore!

rc778

Thank you all for the support and the information.  CanDsMom, did you have to push your surgeon for the MRI's?  I absolutely do not think it is overkill.  I believe in going with your gut and fighting for whatever will give you peace of mind.  Poptart, I will look into the Van Nuys testing...interesting.  Emaline and Shannon, it helps to know that there are others out there that feel the way I do.  My friend was diagnosed with dcis around the same time as I was and she has completely moved on.  She doesn't give it a second thought and I wish I could be more like her.  I get that nothing is 100%...nothing is guaranteed   JNinOK, I know the Serenity Prayer well and say it often.  Thank you.

CandDsMom

rc778 - I actually am getting the MRIs through my oncologist. She spoke to one of my NCI center's radiologists who did not recommend MRI for 2 years post BMX. That is too long for me, given that I just finished recon I am thinking maybe in the next 6 months I will get my first one (although I am a year out now - had my recon gone according to plan I would have insisted on my first one at 6 months out, but, here I am after 5 surgeries in the past year...). The discussion I had with her was along the lines of, I know there is no data to support doing this, but there is also no data against it, therefore, I accept the possibility that I might have to pay more out of pocket and potentially have an unnecessary biopsy if I have an abnormal result. She (my onc) was ok with it. It does seem like on the west coast it is more popular to do these MRIs post free flap reconstruction.

The thing that gets me is that there is no long term data set really for women like me (dx at 35), so that is why I am choosing to be as aggressive as possible with monitoring.

Hang in there... I have good days and bad days, but mostly try to stay positive and enjoy my kids and springtime (((hugs)))

-CandDsMom 

rc778

CandDsMom,

Thanks for the info.  I will see my BS in 2 months so I think I will have a similar discussion with him.  I too try to stay positive for my kids but I do have my down days.  I just want to do everything I can so that I can be around for my kids.  Thanks again.

agada

Hello,

I feel I am in the same boat as you are, but without the yearly check up.  I have been dischared from my onco now.  I am pn0(i+) in two axillary lymph nodes.  I was told this was from the pressure of the surgery pushing cells into the nodes and these nodes are supposed to be negative.  I wonder if my cells have spread as well.  You are not crazy.  My brother tells me to "just get over it".

agada

rc778

agada,

I guess we will be stressing over this for the rest of our lives.  Hopefully, the anxiety lessens with time.  I'm always hearing "move on" and "you're fine now".  Unless they walk in our shoes, how can they really understand?  Sending positive thoughts your way.  Take care.

mommyrnx2

I totally agree with how you are feeling.  I am also newly diagnosed and still waiting for a surgery date and feel like my life will never be the same.  I will always wonder if it's going to come back. My doctor told me that self-breast exams will be the best thing for me after I have my BMX, but I am going to insist on MRI's, we haven't actually discussed MRI's after BMX yet, learning more every day on this site!.  Even if I have to pay out of pocket, it would be worth it to me to make sure any recurrence would be caught early so I can see my kids grow up!

rc778

mommyrnx2,

Once you have your surgery, you will regain some sense of normalcy in your life. Yes, things will never be exactly the same but for the sake of the kids, we try to move forward.  When I see my BS in a few months, I will push for some other follow-up other than a physical exam.  Best of luck to you with BMX.  If it's any help, I did not think it was nearly as bad as I imagined.  My pain was controlled with Motrin after the initial 3 days.  My main frustration was the lack of energy...I needed a 3pm nap everyday for awhile.  Take care of yourself. 

mommyrnx2

Thank you!  I hope I recover as quickly as many of the women here!  I'm too busy to be laying around! You keep up hope, I'm sure we will all feel stronger and more confident as time goes by, it's just hard right now when we are still early in our journey!

rc778

mommyrnx2,

I think it's a good thing that we are so busy.  It's during the down times (like now) that I start thinking too much into things.  Good luck with surgery and let us know how you make out.

JulieL

I think that every doctor is different. I will be two years out this August and I am scheduled for my first MRI post bilateral mastectomy at that time. I also do blood work every 6 months but I think that's basically for an almost 5 year old melanoma. I still see my surgical oncologist every 6 months and she is the one that runs all of my tests. She said that I will have an MRI every two years for at least 12 years but after 12 years I'll be pushing to stay on the same schedule. Even though mine wasn't invasive...WHAT IF????? It's always in the back of my mind. My doctor said I have a .02% chance of getting breast cancer again with a bilateral mastectomy but again.....WHAT IF??

rc778

Julie,

Exactly how I feel.  I guess if my doctor's follow up isn't enough for me, it's time to look for a new doctor.  We'll see how it goes when I see him in a few months.  I need to have that peace of mind.  Take care.