DCIS facts and misconceptions

ConnieBall2

Cycle-path: the more I read on other boards, the more scared I get trying to educate myself. Esp. being at Venice Family Clinic. I've already alienated the surgeon's office where I have a consult on 8/2 by calling & asking questions. Am afraid it has compromised my care by calling & trying to get information. 

Now, I read on discussion board, if they do lymph node removal(s) I could get lymphedema. I already have varicose veins starting. What can I do? I'm at the mercy of the surgeon. It scares me to have to keep on top of things because I don't know what to keep on top OF. 

I read about drains. What is that? do you need them with DCIS surgery? I feel tumor is growing & it's right in front of chest wall, less than an inch.. I'm worried about disfigurement. Radiation. They don't do IORT at all.

What exactly happens to you with this surgery? Step by step. How much pain is there after? Do you stay in hospital overnight? I don't know how to plan for it because I don't know what to expect. Medications - antibiotics, pain meds? Don't have recliner to sleep in as I read about on another board. Live in small & packed one bedroom, have 2 bunnies to take care of. I realize after reading other boards that post-op I won't be able to even change their litter boxes. I'm begging a friend to take them.

Friend says to cook ahead of time for meals, freeze them, get another small fridge. I'm having alot of trouble coping now as it is.  Do I need a special bra? How will I bathe, wash hair? How long before I can shower, lift my arm and not do further injury to scar?

Surgeon's office said they were handling things now, yet said I would need a physical, history & blood done at Venice instead of at hospital, but don't start anything until consult. I don't know that the dr.'s office will arrange any preparation appointments or follow-ups & I don't know what needs to happen after surgery to even advocate for myself.

Don't know surgery date, which can't even be set til sometime after consult...and how much time will go by doing whatever needs to be done with pre-op tests, physical, etc. before surgery. I wish it could all be expedited. It could be months before surgery.....meanwhile the tumor cells are dividing & growing. I don't know if the biopsy puncture (which was very painful & burned) caused cancer cells to get out around ducts. The biopsy report said that the carcinoma extends to adjacent lobules. I didn't know that several ducts. etc. were in only 5mm mass. 

cycle-path

1) you *can* get lymphedema if a small number of lymph nodes are removed, but it's pretty unlikely. LE usually only happens to those who get a large number removed. 

2) when I say you need to stay on top of things, I mean you need to follow up. Make the appointments you're told to make and go to them. Go to the appointments that are made for you. That's what you need to stay on top of.

3) I didn't have drains and while I don't know for sure, I don't believe you usually get them with a lumpectomy.  

4) surgery is generally outpatient under general anesthesia. There's some discomfort afterwards but not what I'd call a lot of pain. You don't need to sleep in a recliner, a regular bed will be fine.

5) I don't know why you wouldn't be able to change litter boxes. I was driving the car the day after surgery and went out to dinner with no problem at all. 

6) A small lumpectomy is not disfiguring. While I do have a scar (surgery was only 7 months ago) my breast looks almost the same as it did before surgery. The difference is barely noticable.

7) Cooking ahead is always a good idea if you're going to be under the weather, but you don't need any separate fridge or anything like that.

8) You don't need a special bra. You should be able to bathe or shower within 48 hours of surgery.

9) It will take about 4 weeks before you'll be able to lift your arm as high as you could before, but you'll still have the other arm and gradually both arms will be fine.

What you have is probably the most minor kind of breast cancer one can get. I must tell you frankly, with no offense intended, that you are WAY over-reacting. Much of the info you've been given and have read applies to women who have mastectomies and advanced cancers, not those who have lumpectomies and tiny, early cancers like yours. You're going to be fine. Stop worrying. It will do you no good and will in fact do a lot of bad! 

ConnieBall2

Cyclepath:

I don't even consult with surgeon til 8/2 and have no idea when surgery will be, if everything will be covered by this Medi-Cal program.  I have been so scared and worried and no one to give me information.  I know my fear and anxiety are not good for me.  I'm having alot of trouble not feeling helpless..There is little communication.  I know I'm not being overseen by Venice Family clinic, and don't know how much this surgeon will be co-ordinating pre-op tests, how they will be done, when the surgery date is.  I'm worried about the DCIS spreading as time lags by.  It really scares me.

The DCIS is back near the chest wall.....and I hope she gets it all out with good borders. I don't know if she will call me about the pathology, if I'll "get"everything in my fear not having the report in front of me.  I want to ask the right questions......what's the border, what stage, any lymph nodes out, are they clear, it is non-invasive, how big was mass, what are the borders....what else should I know.  If the borders are between 1mm and 2mm can I avoid radiation with any hope? I wish they did IORT....I really don't want radiation but feel imprisoned in this system and don't know how to live with the uncertainty of recurrence.  If it's below what percent could I feel relatively safe not having radiation.  And what's tamoxophin for? Is it for radiation or estrogen receptor stuff.  Oh, I hope I don't forget that question.  I get really sick on many medications....my system is very sensitive.'

I don't have internet anymore.  I'm at the library.  I'm still on dial up and my computer may have fried the portal where the phone modem is...I ordered another, but have lost AOL I fear and....well, someone else was paying for it who gave me the computer.

Worried about money and taking care of myself.....my body.....nutrients......all so expensive. How can I protect my skin during radiation and after?  Did you detox?  I don't have a nutritionist to guide me.  I have very fair skin, and burn easily. Even the surgical tapes and adhesives leave my skin red and burning blotches.

Wish I could get in home help.....can't reach Inhome services through the welfare office.  The waiting under these circumstances is unbearable.

How fast do these things grow?  Can I slow it down the Indole-3 carbinol (a nutrient that kills breast cancer cells)?  I got some green tea extract to help with that too.  Anything else I should take?

jj2011

Great info and thank you for your sharing.

For those who have DCIS, did your doctor mention laser surgery as

http://www.laserbreastcancersurgery.com/benefits-of-laser-surgery.html

I found the laser is far more better than knife for the lumpectory.  But, my famliy members do

not believe it since only one site mentions.  I am just debating whether I should try standard way

or laser.  Just can not decide and I am going to see the surgeon on Monday.

BTW, check these new treatments:

http://www.cancernews.com/articles/breastcancertherapies.htm

Thank you.

ConnieBall2

Cycle-Path:

I do have internet and email right now.  Wondering if you could respond to last reply July 22? I would really appreciate it.  Thank you.

dgmlmax

Thanks for the great info.

River_Rat

Bumping to keep on the first page.

cycle-path

Hi Connie, I'm sorry I didn't see your other post for some reason. You must have had the surgical consult by now -- tell us how it went.

marie5890

Bumping for Vanlex....

vanlex

thanks!  tons of great info. 

prayrv

BUMP

marie5890

Bumping for BlairK 

Beesie

Bumping for TheLadyGrey.

TheLadyGrey

Bump for prncsviolet.

bexybexy

AAAARGGH! wish I hadn't read this! Maybe I am reading something wrong here!

I had a lumpectomy and was diagnosed with DCIS. Due to have mastectomy and was feeling really positive as was told this is my best chance to get rid of these cells. But according to what you put 20% of DCIS cases also have IDC! Does this mean after I go thru all this surgery there is a 20% chance I will be told I have invasive cancer?!!!

I thought there was almost a 100% survival rate for this!!!

CookieMonster

bexybexy

I was diagnosed with DCIS in early August, had a lumpectomy and in the middle of the DCIS they found one small area if IDC. Still totally treatable and TOTALLY survivable. I'm NOT going to die. If they find IDC, they will want to check your lymph nodes (SNB) for any sign of cancer cells (mine had none), but you don't suddenly go from DCIS to dying. You should be fine.  BTW, my DCIS was big 7.9 cm in its largest dimension and still I'm doing fine. 

Feel free to ask more questions if you have them.

Beesie

bexy, my situation was the same as CookieMonster's.  I had a 1mm invasive tumor in the middle of over 7cm of DCIS.  So CookieMonster and I are both part of that 20%.  For me, there was no change in my treatment plan, except that I needed to have my nodes checked, as CookieMonster explained. And there was hardly any change in my long-term prognosis.  I'm 6 years out and I'm just fine. 

Here is a link to a more detailed answer that I provided to your same question in a different thread:

http://community.breastcancer.org/forum/68/topic/777582?page=1#post_2695458 

Stanzie

Bessie - that is so wonderful of you to have posted and so wish I had been able to have understood everything so clearly before my surgery so this is so huge for anyone newly diagnosed - such a great amount of information.

However that said it give me two questions:

First is I had the SNB where one node was removed but was told I had no node involvement. So when you say it lights up, that is just showing where the SN is correct not that it has involvement? So they have to remove and test at least one node to know whether there is involvement, yes?

Also, I was diagnosed with LCIS at the same time as DCIS and because I was current on mammograms they could tell they both developed within the year. They told me with this diagnosis, that I would get DCIS or some form of cancer in the other breast since breast tissue developes originally from the same cells. Do you know if this is correct? 

Thanks and thanks for putting out such clear important information.

Beesie

Stanzie, 

Yes, when I said that the node lights up from the injection, I meant that this is how the sentinel node is identified. That's how the surgeon knows which node or nodes to remove when doing an SNB.  It has nothing to do with whether or not there is nodal involvement - the node needs to be analysed under a microscope to know that.

As for being told that your DCIS and LCIS developed within the past year because you were current on your mammograms, I don't think that there is any way that your doctors can know that. It can take years for cancer to develop to the point where it's large enough to be seen on mammogram films. And mammogram films aren't 100% accurate. Some of my DCIS showed up on my mammo film however I had a lot of DCIS that didn't show up. But it was there. Maybe as the cancer cells continued to multiply, in another year, or two or three, it would have shown up, or maybe not.

I'm unclear about what you were told about your risk to develop BC in your other breast. The cells in each breast are separate and breast cancer does not pass from one breast to the other. However, once any of us are diagnosed with BC one time, our risk to be diagnosed again is thought to go up. This is because whatever it is that caused the first development of breast cancer possibly could cause breast cancer to develop again. My oncologist told me that I had about double the risk of the average woman my age to develop a new primary breast cancer.  I was diagnosed at the age of 49; the average 49 year has an 11% lifetime risk to develop BC.  So that meant that my risk was about 22%. That's high but I preferred to look at it as saying that I had a 78% chance of never developing BC again. While "double the risk" is a good rule of thumb, what your actual risk is depends on your age and your individual and family risk factors.  

TheLadyGrey

I had an off mammogram, then a diagnostic mammogram, then a sonogram, then a biopsy, then an MRI, then a full body X Ray, then a nuclear medicine scan.  

Not one of those tests ascertained invasive breast cancer which bears virtually no -- as in zero -- resemblance to the cancer the biopsy reflected.  

Oops. I HATE it when that happens.  

Tests are what they are, they tell you what they tell you, but don't go thinking they can be relied upon because it can all change in the next five minutes.

Stanzie

Thank you Bessie. Yes, I do agree the cancer could have been too small to show up on a mammogram and was warned that this is what they saw but once they got in they might find more. I had forgotten about that.

You know what he said about why he thought the LCIS and DCIS together would be more likely to show up again was confusing but here is what my cousin who went with me and what we both remember. He said basically that when my body was being formed as an growing baby in utero, the cell that would be come breast cells were the same cell and because LCIS is a marker for cancer and normally it is something that they watch but mine were diagnosed at the same time. Therefore he said he wouldn't be surprised to see the same diagnosis in the other breast. He did still say a lumpectomy was a good option but I just couldn't get that thought out of my mind and didn't want to put myself and especially my kids through it again. I have often wondered after the fact how true that was as I have never heard or read of anyone else being told that but then haven't found many who have both diagnosis at the same time. However as you mentioned above, the LCIS might have been around for much longer and just became big enough at the same time. Makes me wonder if they grade LCIS or just DCIS? Thank you again, I appreciate your understanding of all this medical information and stats. 

TheLadyGrey

Another bump.

prayrv

BUMP

Anonymous

Bumping for newbies.

dp4peace

Very informative and thorough post on DCIS -- thank you Beesie. You should make a booklet for newly diagnosed patients!

FeelingtheMagic

Beesie.. this is my first post here and I just want to say "you rock".. thanks for your post!

Beesie

Thanks!  I just read this over and realize that I need to update the bullet about the Oncotype, since it is now available for those with DCIS who are deciding on radiation.  I might also add a bullet on Tamoxifen.  No time now, but I'll try to make those edits to my original post later today or tomorrow.

marie5890

Bumping for Shayne

mnkid

This was very helpful.  Thank you.

MsBliss

Wow, Beesie, many thanks for this.  You covered so many questions and angles, I am grateful!