Timeliness of treatment and responsiveness?? So frustrated

Jade645

Hi.. I am writing on behalf of my mom. I am so frustrated right now I want to scream.. o.k. I have screamed and cried and all that.. but right now I am most frustrated about how slow everything seems to be moving and I would love to know others experiences in related to waiting.

My mother got her diagnosis on 11/30 and had the biopsy almost 10 days before that.

She has her appt with a surgeon on 12/30.. we are not even sure what is being recommended... other than "surgery"

I realize depending on stages etc. the outcome can be very positive but it seems like they pretty much told my mom she had cancer and that was about it all we know is it is

ductal carcinoma in Situ

To make it worse my mom has actually had symptoms since Feb 2/14 and had an aspiration and several other tests that were either negative or inconclusive. In my moms mind she has had cancer since February and is already feeling that have been super slow to detact and react so in her mind it is spread in her whole body and she will die soon. I know we don't have the information to say that.. but it is her current emotional state.

Is this normal?? It doesn't seem normal??

Are there any advocacy groups that can help us out. I live 8 hours away from my mom with two small kids and a job.. and I am seriously thinking about packing up and going to help but my husband and the rest of my life.. anyway... I am sure you get it.. please help.

YoungTurkNYC

Jade,

If the diagnosis is DCIS - ductal carcinoma in situ, it is a NON-invasive cancer and by definition cannot spread.  It is the best stage to have - stage 0.  Many practitioners view this diagnosis as pre-cancer as it has no ability to spread.  So, try not to worry. Everything will be fine.

exbrnxgrl

Jade,

Waiting is never easy but take slow, deep breaths. DCIS is a non-invasive type of bc, meaning it cannot spread. There are some who believe that this not really a cancer, but rather a pre-cancer, since it is not invasive. Is it possible that invasive cancer will be found during surgery? Yes, this could happen but chances are it won't. As for treatment after surgery, nothing will or should be recommended until the post surgical pathology report is done. That report gives the most complete picture of the situation and drives tx decisions. Yes, you can spend lots of time googling and speculating, but until you have the post surgical pathology report it remains speculation. Yes, the time frames are normal. I don't mean to marginalize your mom's situation, but DCIS , though it needs to be taken care of, is not an emergency. It is very favorable. Take care.

Kicks

Different types of BC have different TX plans, time frame for TX and different prognosis.

If you are going with her to her appt have a list of all the questions (make a second copy of the list and give it to the Dr). If you aren't going have her take the list. Write down the answers and if she/you does not understand the answer, ask for clarification until she/you do. Another option is to take a tape recorder or Smart Phone and record the appt so what is told can be reviewed later if needed.

If questions are not asked, the Dr does not have anyway of knowing that 'you'are not understanding what they are saying.

Check to see if she has listed you on her records as having her permission to be given information if you call them. Just because you are her daughter do automatically mean that you have the right to be given medical information. Every Dr/Facility I deal with has Hubby and Son on the record so if they feel the need for more information than I give them they legally can. They never have felt they needed to as they say I explain 'whatever' better than a Dr would - but they have option to if they feel the need. We are each different and what 'works' for me that I feel comfortable with, isn't necessarily true for all.

wrenn

my lump was found june 15th and surgery was august 16th. Mine was known to ne invasive and aggressive. It still felt like they were moving quickly with mine. It is hard not to worry when you are waiting for answers. Try to distract yourself if you can. Hoping for good outcome for your mom.

Jade645

thanks ladies. I am feeling a bit better already. It just seems that they should have given my mom the information that it likely has not spread and overall good prognosis .. Or do they refuse to be positive until after the surgery and more complete information. The doctor left the room when she started to cry and never came back to answer more questions he sent the nurse. Something still seems wrong to me about the amount of information support she is getting or even easing her mind about the seriousness.

I've got more I formation on here than from the two doctors she has dealt with.

GG27

Jade645, As others have said, but I think it needs to be repeated, DCIS is a non invasive kind of breast cancer, the time frame for your mom is very good. You & your mom are at the worst possible moment in all of this, until she's had surgery & a pathology report and then a treatment plan. Of course, it's not helping that this comes at a time of year when everyone has other things on their mind & you just want them to concentrate on your mom!

Some Dr's are really very poor at explaining all of this & you don't know what questions to ask at this point. I found out in October & had to have tests & other appts before I could have my surgery in January & it was absolute agony waiting. But the surgeon I had was wonderful in explaining to me that waiting even up to 2 months to have surgery was not going to make any difference, it had taken years to this point.

Dr Google is not your friend, trust me, a lot of the information is woefully out of date. This is a good place to ask questions and there are no stupid questions. Take a deep breathe, you & your mom will get through this. GG

Moderators

Dear Jade645, welcome to Breastcancer.org. We're sorry you have to be here, but glad you found us!

We are sorry about your mom but she is lucky to have a concerned daughter like you.

Please read reliable information on DCIS — Ductal Carcinoma In Situ, Diagnosis of DCIS where you'll learn about symptoms, diagnosis, treatment, etc.

We hope this helps! Please try not to stress too much (easy to say)

The Mods

DiveCat

As others have pointed out, DCIS is non-invasive and many consider it a pre-cancer. It is not certain to become invasive, either, though they do not know why sometimes it becomes invasive and sometimes does not. The timeline for your mother actually sounds great given it is DCIS. DCIS has very favorable prognosis with treatment as it has NOT spread outside of the ducts. Surgery is the primary treatment for breast cancer, and with DCIS often is only treatment (either mastectomy or lumpectomy with radiation). They may recommend an anti-hormonal drug to reduce risk of a new future primary or local recurrence.

While there are some breast cancers that grow or spread very rapidly (like some triple negative cancers in some very young women, as an example) it is believed that many breast cancers start several years before they are detectable, and a month or two either way is not going to be significant; this is particularly the case with DCIS. Sometimes surgery for DCIS finds an invasive component but this is not by any means in the majority of cases, and that invasive component is often small.

Some doctors don't have great bedside manner, nor do they want to provide guarantees, but it helps to go in with clear questions for them.

Best wishes to your mom!

Ariom

Hello Jade, I am sorry you and your Mother are going through this, we all know how difficult the waiting is. Unfortunately a lot of Doctors have no skill in explaining the finer points of the Dx. As the others said, asking questions is often the only way o get the information you need.

I agree with everything the others have said and I urge you to take a look at the link the Mods have given you to the information on DCIS. It will give you a better insight into what you're dealing with.

I was another who received a Dx of DCIS, I had never heard of it and at the time Simply the mention of BC was enough to send me into total freak out. My surgeon explained it quite well and he didn't trivialize it. He called it Grade 3 "pre-invasive cancer", but couldn't promise there would not be an invasive component discovered, in the final Pathology.

I was Dx around November, surgery couldn't be arranged till late Dec and then I had to wait till well into the New Year for my final pathology, so it was a couple of months, of stressful uncertainty. I printed out the information on DCIS from BCO, for friends and family, just so everyone was on the same page,. I was also hoping, Pure DCIS would be my final Dx.

I was very fortunate that my final pathology confirmed I had Pure DCIS, which was removed with my choice of surgery, a Umx, or single mastectomy. I also had a SNB sentinel node biopsy, as a precaution, in case there was any invasion found. I discovered that my DCIS was most likely present and missed, in my previous mammogram, 2 years ago. I was also given the option of a lumpectomy and 6 weeks of radiation without a SNB, but for me, the Umx, was the right choice and I have no regrets about that, or my decision not to reconstruct.

Try to comfort your Mother with some facts about DCIS and let us know how you get on at the next appointment.