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Friend has Hygrade DCIS Camedo Type Cancer..Terrified

angel1949
Posts: 7
Joined: Aug 2011

My friend has Hygrade DCIS Camedo Type breast cancer and is terrified and just sick. She has had a lumpectomy and has had her sentinel and auxillary nodes removed. The nodes were clear. Two out of the eight slides only showed a little bit and the margins were clear. After the lumpectomy nothing showed up on the mammogram. Her dr. is suggesting an MRI now plus radiation.He says she has too much estrogen and wants her to take aromasin. She is 63. She is so frightened.He told her the cancer she had is very aggressive.I am thinking it was stage one.Can anybody here please give me some information. Ive been doing a lot of research on this as she says she gets sick just trying to read about it.Thanks so much.

MAJW
Posts: 2515
Joined: May 2009

Dcis means the cancer is contained and is removed with usually radiation to follow.....and she is Estrogen positive it sounds...when you say" they contained a tiny bit" what do you mean...some nodes were positive for cancer? Usually DCIS is not as aggressive, as a rule....
Perhaps you could go to appointments with her...two sets of ears....and ask for more clarification on the type she has....

I'm sure more will chime in with their experiences....you're a good friend...she needs you now more than ever...
Keeps posted, we care

angel1949
Posts: 7
Joined: Aug 2011

Thank you so much for the quick reply. No, the nodes were clean,nothing in the nodes he told her.The dr. told her camedo type means it is an aggresive cancer that she has and if any of the cancer cells do get out of the ductal area they will be very aggresive so she is just so terrified and so upset and depressed. She says it makes her sick to even get on the computer to do research as it scares her so bad.The dr. did go in and do some surgery and he said the margins were clean and Im not sure what she meant by a tiny bit,Im not sure if she meant the margins. Another dr. said she needed an mri.Thanks

She had asked me to go with her to an appt. Maybe I should.I can ask the dr. questions. I told her what she needs to do is take a note pad and write down notes or she can even ask for copies of her medical records.

I do hope others reply. Thanks again and take care.

jessiesmom1's picture
jessiesmom1
Posts: 725
Joined: Jun 2010

I found the following information at http://www.imaginis.com/breast-health/ductal-carcinoma-in-situ-dcis-3. I hope it helps. I found it very informative.

The term, ductal carcinoma in situ (DCIS), refers to a family of cancers that occur in the breast ducts. There are two categories of DCIS: non-comedo and comedo. The term, comedo, describes the appearance of the cancer. When comedo type breast tumors are cut, the dead cells inside of them (necrosis) can be expressed out just like a comedo or blackhead on the skin.

The most common non-comedo types of DCIS are:

* Solid DCIS: cancer cells completely fill the affected breast ducts.
* Cribiform DCIS: cancer cells do not completely fill the affected breast ducts; there are gaps between the cells.
* Papillary and micropapillary DCIS: the cancer cells arrange themselves in a fern-like pattern within the affected breast ducts; micropapillary DCIS cells are smaller than papillary DCIS cells.

Comedo type DCIS (also referred to as Comedocarcinoma) tends to be more aggressive than the non-comedo types of DCIS. Pathologists are able to easily distinguish between comedo type DCIS and other non-comedo types when examining the cells under a microscope because comedo type DCIS tends to plug the center of the breast ducts with necrosis (dead cells). When necrosis is associated with cancer, it often means that the cancer is able to grow quickly. Necrosis is often seen with microcalcifications (tiny calcium deposits that can indicate cancer).

angel1949
Posts: 7
Joined: Aug 2011

Thank you so much for doing the research.I have done a lot of research for her as she is scared to even read anything. I told her she really needs to educate herself as much as she can about this type of cancer. I am wondering then if she has the camedo type if a massectomy is the best way to go. Her cancer was caught in the pre cancer stage I am thinking. It has not spread to any lymph nodes or went anywhere the way she understands. She doesnt understnad why she needs an MRI and she is thinking that she doesnt need this. I also told her it wouldnt hurt to get a second opinion from a totally different set of drs. I am wondering if anyone has this very same aggressive cancer and what did they do. I would appreciate your replies very much.

Thanks again and take care.

MAJW
Posts: 2515
Joined: May 2009

MRI'S...PET Scans, CT scans are pretty routine ...I've had all three, plus a bone scan....actually she's lucky her physician wants them...It can give her peace of mind knowing it has not spread....Please go with her to her appointments,note, pad in hand....Right now she's trying to absorb to much information, it's overwhelming.....Sometimes it's best for her to stay OFF the Internet...there's a lot of misinformation out there....The American Cancer site is one of the best and this board is full of wonderful, caring, experienced women who have walked in her shoes...
Hugs, Nancy

angel1949
Posts: 7
Joined: Aug 2011

Thank you so much for more information. I am the one doing a lot of research for her. I seen where with an MRI it can show a lot of false positives and then she may end up with more surgery she doesnt really need. Yes, there sure is a lot of information on the internet. And I did read that this is a really good website and I told her she really needs to find a good discussion/support group but she doesnt really know how to do this so I did research and found this to be amongst the very best. This is what I want. And maybe I should go with her. I am sure she is so scared she cant even think right nor remember much of what the dr tells her. Id be scared to. God bless all you women who have been through and are going through all this.

Thank you so much for caring.
Angel

TChinn
Posts: 1
Joined: Aug 2011

Another suggestion...in addition to going with your friend, you might want to take a little handheld recorder. I am a recent breast cancer survivor and I always had someone go with me to my doctors' appointments. She would take notes but as a back up, I recorded each session. I would let the doctors (surgeon, oncologist, & radiation oncologist) know up front and they all embraced the idea.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Praying for your friend.

Hugs, Leeza

cinnamonsmile
Posts: 1049
Joined: Dec 2010

DCIS is not precancer. It is preinvasive,meaning it has not left the milk ducts and invaded surrounding breast tissue. If it should leave the breast tissue and caught early enough it is called DCIS w/microinvasion, which I believe might be Stage 1, depending on the mm of cancer beyond the milk ducts. It is classified as Stage 0. I know it seems weird to have stage 0,but that is how they classify it.

Altough the higher grade and comedo necrosis make it a more aggressive DCIS, it is still only DCIS, very eary cancer.

Once she meets with her surgeon and oncologists, she should get a full understanding in her cancer. Hopefully, her oncologist or surgeon will explain the progression of cell mutation into cancer, treatment options, side effects, etc.If they are a good oncology office or have the extra money, they should have books on the basics of breast cancer she can borrow as well. The first oncology clinic I went to didn't, the second did.

I think the initial repsonse to hearing you have cancer is to think the worst. DCIS is actually a very good thing to hear if you are going to have cancer.

There are much more aggressive cancers out there, so it is not like she has "the most" aggressive.

The American Cancer Society has wonderful information on this webiste that details cancer in general, types of breast cancer, treatment options, side effects, etc in a very organized lay out. I found it a bit hard to find at first, so you can call the American Cancer Society and they will email the links to all the information needed or asked about. They are very nice on the phone.

I had an MRI and I am glad. Sometimes things can be hidden in the mammogram or ultrasound.

Your friend has just had a devastating bit of news given to her. And like I said, your head swims when you hear it. Like it was mentioned, it would be good for her to take someone to her appts. I always did and was glad because it such a wealth of info given in a short time, under such psychological stress. Let her take in the information as she can handle it. Some like to get out there and get all the info they can right away and some like to wait until the info is given to them and everything in the middle. Her surgeon and oncologists will help her decid what is the best way for HER to go in treatment. Try not to jump to conclusions and jump ahead to what is she going to do for treatment. It sounds like she is pretty devastated and needs a little time to breathe maybe? Since it is DCIS and it may be high grade with dead tissued around it, she may have more time to decide her treatment plan than other cancers.

Just for your FYI, chemo is not recommended for pure DCIS. Standard treatments are usually lumpectomy with or without radiation (although most choose rads), and if the cancer is hormone positive in her case, something to inihibit the body cells' use of hormones or mastectomy. Although a mastectomy is no guarantee that rads won't be necessary either, depends on the results and her, the surgeon, and oncologist deciding together what to do.

I wish her the best as she travels along her cancer journey with us...

angel1949
Posts: 7
Joined: Aug 2011

I suppose if I had this diagnosis I would be completely confused also and wouldnt know exactly what to do. And to come to a site where there is a discussioin group I think is helpful as you can talk to people who have been through this. I pray I never have to go through this myself but one never knows. I dont think the drs. is suggesting the chemo,just radiation ,an MRI, and this pill call Aromasin and I seen where a lot of people take the hormone pill that starts with a T. I never seen where anyone took this particular pill.

This is a smaller town with not many drs. to chose from.It is not like the bigger cities where you have so many different drs for a choice. I appreciate your reply .

Thank you so much for the information you have provided.

Take care.

Angel

atiredparent's picture
atiredparent
Posts: 45
Joined: Jun 2011

It has been helpful for me to have a friend with. I went to one with a notebook but was so overwhelmed I forgot to take notes.

My opinion on tests ordered is reassurance that it has all been caught. I like to take advantage of it. What can it hurt?

linny b's picture
linny b
Posts: 25
Joined: Jul 2011

I also had the same diagnosis in 2008, had lumpectomy and 7 weeks of radiation, unfortunately for me, and this doesn't happen to everyone, the cancer came back in 2010, and I had to have a mastectomy. This cancer is aggressive, do everything you can to get rid of it. Good luck

angel1949
Posts: 7
Joined: Aug 2011

Hi Linny

I am so sorry that your cancer came back. I am hoping that you are now doing ok. I pray that God will watch over you and hold you in His loving arms.

Thank you for replying.

Take care
Angel

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

I am very sorry to read this about your friend. Sending positive thoughts and prayers!

SIROD's picture
SIROD
Posts: 2200
Joined: Jun 2010

DCIS is precancer and the lumpectomy did not take care of the situation. Perhaps a mastectomy would be better if she doe not want radiation.

Aromatase Inhibitors are wonderful for women of age 63. They should take care of the estrogen issue. What AI do is block the production of estrogen at the adrenal gland level. Ovaries in a 63 year old woman are no longer producing estrogen. Without estrogen, the cancer can't grow.

It does take time for one to adjust to the fact that their body had cancer. I was unable to read anything at all when first dx except Dr. Susan Love, breast book. I only read the chapter I was involved in personally. Then after a while, I wanted to know everything about breast cancer. I read and read and then the internet was able to provide me with excellent web pages. Forums are wonderful to read, it help knowing other people have your problem and the knowledge glean from other experiences can be valuable. Encourage your friend to join.

http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=2&L4=3&SID=164

What is ductal carcinoma in situ (DCIS)?
As more women have gotten mammograms on a regular basis, DCIS has been found far more often. DCIS is a noninvasive precancer. It is not life threatening. If you have DCIS, it means that you have abnormal cells in the lining of a duct. While virtually all invasive cancer begins as DCIS, not all DCIS will go on to become an invasive cancer. An invasive cancer is one that has the potential to metastasize (spread). Right now we have no way to determine which DCIS will go on to become invasive cancer and which will not. That's why doctors recommend DCIS be treated.

dyaneb123's picture
dyaneb123
Posts: 951
Joined: May 2009

And as the other's have said, it is so important to take someone with you to your first meetings to take notes and ask the questions that your friend might be too overwhelmed to ask. No one can process so much new info. on their own right away. I started reading everything I could on the internet too, but really, it was the posts on this site that helped me understand what was happening to my body.Even though every DX and treatment is unique to that person, we all can share so much personal experience. The Onc. will tell you the dx and the treatment, but it is the women here who have already experienced the surgeries, the chemo, the radiation, who can help your friend understand what to expect. And it's not all scary terrible! Most of us have successful treatment and are able to go back to our precancer lives. It sounds like from what you've said that your friend may have caught her cancer early. So after you have seen the Onc. and have info. specific to your friends DX, post your questions here and someone will have experienced something similar and will be able to help.
Hugs
Dee

angel1949
Posts: 7
Joined: Aug 2011

Thank you so much for the reply. My friend has been reading all the replies on this site and she is feeling so much better Dee. She was so scared and I knew there had to be discussion groups for this kind of cancer and since she was not familiar with how to do this I told her I would do this for her and she could read the posts. Eventually maybe she can learn to do this herself and she can come here and talk to everyone as everyone here has been through so much and you are all such wonderful and caring people. My friend is such a good person,does so much for everyone and I am happy to do this for her. She says she doesnt feel nearly as depressed now and she is not going to dwell on this and she is going to be more positive. I am just so grateful for all the replies she has gotten.It means so much to me and to her also.I just pray everything is going ok for you and for all the others here. May God bless you and all the others who come here to read the posts.

Hugs to you also
Angel

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