Diagnosis with IDC

dtad

gremx003 The information on this forum about lumpectomy vs mastectomy is excellent. Did she give you any other information about the tumor. Estrogen/ progesterone receptors?' Her-2? Grade? These are the things you would want to know before making the decision. Good luck...

JoeyJamesMom

Hi, dtad.

That is a great question for gremx003 and may be very important information to know.

I was triple negative, so my breast surgeon wanted me to have chemo first. I was so glad I did because I could literally feel my tumor shinking with each treatment until it was gone.

If I had had the surgery first, I would have wondered every day if it had truly worked.

Also, anyone new to this I would ALWAYS go for a 2nd and possibly 3rd opinion. I saw 3 breast surgeons. Thankfully, I did because if I had gone to one of the breast surgeons I had seen I honestly do not think I would be here now. The scary part is that she came highly recommended.

And, I saw 2 oncologists..They both agreed on the treatment plan so I felt confident about it.

I wish all of you the best of luck!

It is a rough road, but we do get through it. By the grace of God!!

Lynda

Acjeffrey

I was diagnosed with Invasive Ductal Carcinoma on September 9, 2015. My bilateral Mastectomy is scheduled for October 26. So Gremx003, I'd be happy to communicate and support you through this. I'm new to all of this as well. My tumor is about 5cm, grade 3, ER+ PR+ HER-, not sure if I will have chemo or radiation. I am definitely having hormone therapy. I do have one question, do all grade 3 have lymph node involvement?

msphil

hello sweetie, i too had the same feelings, and was planning our 2nd marriage when diagnosed, so i had my cry and thouhgt of dying young i was 42. But by thr Grace of GOD i am now a 21yr Survivor, i decided  to fight and to have HOPE sayin each nite,when couldnt sleep," cancer u have to leave my body" and stayed Positive, i believe im still here for u and others to encourage HOPE. msphil(idc,stage2, 0/3 nodes, L mast, chemo and rads and 5yrs on tamoxifen)

Ellelou

Acjeffrey--I really don't know the grading system well, but what I do know from the experience of a unilateral mastectomy for IDC in April, is I believe that during your mastectomy they will do a Sentinel Node dissection. I'm going to explain this badly--sorry--but basically it means that they will remove a few nodes that are closest to the breast and send them immediately to the lab--during your surgery--if they discover cancer cells in the nodes they will remove more and send them to the lab to get an idea of the extent of node involvement. That's how you truly know if you have node involvement. Obviously the more nodes involved, the more worrisome. After that you will find out what Stage cancer you have and that will drive what treatments you under go.

Best of luck and if I can answer any other questions for you-just ask.

Ellen

Acjeffrey

Thank you, it's the waiting that's troublesome. My work keeps asking me when I will be back. I can't give anyone an answer. What about you? How long were you off

Ellelou

Acjeffrey-I would estimate you should plan on 6 weeks post op recovery, but everyone is different. I felt kind of off or odd for abut the first two weeks, probably just dealing with the shock of the surgery. I felt more myself after that but you really have to give yourself time to heal and that means lots of rest with some activity-whatever you can handle. You'll come home with some drains attached. Small hand grenade sized fluid container that dangle from a long tube that come out of the arm pit area. I had two on my left side. They are emptied a couple of times a day and you measure the fluid. The drains get removed individually after the output dropped to a certain level. The hospital nurse will explain it. It's wonderful after you get all of them out. Be sure and have small underarm pillows to pad the area. At the hospital they gave me one. You can read all about this stuff on the Internet so I'll stop but ask me anything else.

Bottom line is you may need more but maybe 4 weeks is ok too. Depends on what you do too, some jobs are more physically demanding.

gremx003

I have to make a decision between Lumpectomy and Mastectomy.

My sugeon was going toward a Lumpectomy and radiation.

I have a copy of all my reports since the last 3 weeks.  I was concern about a paragraph that says this :
“Magnification views of the calcification within the left breast show a cluster of microcalcification in the left upper radiat.  These appear slightly pleomorphic in morphology. They are somewhat linearly arranged. A subtle more anterior loosely scattered punctate cluster
microcalcifications is also noted closer to the nipple but along the same radian. The appearance is suspicious for a segmental ductal system distribution
of microcalcifications”

So I was concern with that second cluster.

So I called my surgeon as my surgery was planned for October 26th for the lumpectomy,
and told her that I had a copy of all my reports from the hospital and one of them had this paragraph that I was very concern about.  She said she never
read this report.  So I called the radiologist who wrote the report at the hospital.  She is a very nice person and she called the surgeon.  I just talked to the surgeon and she said “I never read that report and maybe we should do a mastectomy instead of the lumpectomy.  She is now concern about that other microcalcification closer to the nipple as a second cancer.  What does it mean??

If I would of not read the report they would of gone for lumpectomy and in a year I would of have to go through all of this again + it would have grown in the next 12 months ???  I lost faith, I am really scare now.  Do I really need a mastectomy or the lumpectomy??  If
I get the mastectomy she do not do reconstruction at the same time. I have to have another surgery later.   How can a surgeon not read
the reports?? How can she make that mistake??  Who am I going to trust now??  All I want is a surgery to get rid of this cancer, I am
agreeable to whatever surgery I need but not because I am telling them what I need because of what they believe as a surgeon.  I am devastated and scared again.  Not sure where to go and what to think..... any advise would be great.....

Thank you and sorry for the venting....I feel so alone.

marijen

gremx300, can you go get a second opinion at a different practice. I would not want a doctor that did not read the report

gremx003

I don't know how but researching.....again I live in Canada and you can't get another surgeon without going through your family doctor...but working on it...so it is not me that is crazy right ?? I have the right to have concerns ??

marijen

i see you are new too. I've been reading posts. There are lots where they have surgery and then have more cancer to put it simply. I'm worried about that too. You are not crazy. If you were really bold you might have told your doctor how much it worries you that she's not paying attention to the test reports. Really what else does she have to go on? I am having lumpectomy in two weeks. I don't want more if I don't have too because then there is more surgery - reconstruction. It depends on how old you are. You can search mastectomy vs. lumpectomy. I have spent days reading on my own stuff

BarredOwl

Hi gremx003:

It sounds like there are some suspicious calcifications in other areas. While there is science behind the standards of interpretation for imaging (e.g., mammography), there is also an element of judgment, skill and experience in the visual assessment and interpretation of images.

If I understand correctly, in your case, they are now basing a recommendation for mastectomy on imaging results from areas that have not yet been biopsied. It is more than reasonable to seek a second opinion regarding both the interpretation of those images, and the appropriateness of the surgical recommendation based on that interpretation. It is possible that further imaging studies (e.g., diagnostic mammogram) or biopsies might be recommended.

When I received an initial diagnosis of DCIS (multi-focal as determined by biopsy) and a recommendation for mastectomy, I sought a second opinion. That is a big step and I wanted confirmation that it was appropriate. The second opinion process involved a team review (surgeon, radiologist, etc). It included a review of all prior imaging, actual pathology slides (sent overnight), written reports regarding same, and the surgical recommendation.

I was really just looking for input about the surgical recommendation of right mastectomy. So, I was surprised when they agreed about the right mastectomy, but disagreed about the imaging on the left. A further diagnostic mammogram was ordered, and then another biopsy, which led to the additional diagnosis of DCIS on the left.

Please do not hesitate to seek a second opinion, if possible.

BarredOwl

marijen

gremx, there is a Canada thread did you see it? Barred Owl has great advice.

Ellelou

gremex----did you have a biopsy of the cluster in the upper left? If so, what did that report say?

The report that you quote from--was it from a mammogram or an MRI?

Have you had an MRI?

gremx003

yes the biopsy of the upper came back with invasive ductal carcinoma.

I've never had an MRI only mammogram and compress spot imaging.

 

gremx003

How do I access the Canadian thread ???

Ellelou

Before you do a lumpectomy or a mastectomy, you should have a breast MRI. I had IDC like you and my Oncologist sent me for a breast MRI.

It showed the IDC but it also showed a large diffused area of DCIS so my scheduled lumpectomy turned into a mastectomy. Basically I wouldn't have had much left after removing the IDC and DCIS so the whole breast was removed.

The decision for a lumpectomy or a mastectomy should be based on evidence, not preference I think. By the way, my medical malpractice attorney friend told me to be sure and have a breast MRI before surgery, fortunately my MO ordered it before I even asked.

BrooksideVT

Gremex, before my surgery I had an MRI which identified a second lump. A biopsy showed it to be benign but I wanted it out and opted for a double lumpectomy followed by radiation, not a mastectomy. My breast looks just fine and I am happy that my recovery was very, very easy.

Please do ask your surgeons (current and second opinion) for their thoughts on dealing with both sites through either mastectomy or lumpectomy.

marijen

Canada thread for gremx003

https://community.breastcancer.org/forum/55

gremx003

thank you all, will try to get second opinion.

dtad

I too was diagnosed with a second malignancy from a pre op MRI. IMO if you have dense breasts an MRI is a absolute must before you make any surgical decisions. I was scheduled to have a lumpectomy before the MRI and ended up deciding on a BMX. I was no picnic but now 4 months later Im happy with my decision. Good luck...

marijen

where are all the IDC people

gremx003

I am not sure.....how are you ??

marijen

Hi gremx003, we talked before recently at other Topics when I first go here less than two weeks ago. Just wondering why no activity here. I'm doing ok. Found a discrepancy in my pathology/us/mri reports on the size of my IDC area. Surgery next week so wondering which is more accurate for sizing MRI or US? Want to make sure the surgeon gets it all!

How are you? Where is your dx/tx info?

gremx003

Yes today is not a good one, can't stop crying.  I am reading everywhere that size ane extent of the cancer is not accurate with the mammogram so now wondering what they will find after surgery.  My surgery is Monday for Lumpectomy and Sentinel Lymph node biospy.... can't wait to have more answer.

Rigth now I don't have a real diagnosis...I have 2 microcalcifications, biopsy shows IDC.  So they will remove both on Monday.  They said they think stage 1 because of the size on the mammogram.  I didn't get anyother imaging tests like us or MRI.  they said on Nov3 I will find out the grade, subtype and the status for the lymphones.... this is all I know.  When is your surgery next week ??

Take care of yourself.

Marie.

 

Englishmummy

Hi Grem & Marijen. Hope things are becoming clearer for both of you? Do you both have a treatment plan in place now....This is all so hard in the beginning.....Marijen, how big is the discrepancy? There is someone on here (TShire) who also had a discrepancy in her reports - she challenged her Dr. who in turn questioned the pathologist and it WAS a mistake - the difference pushed her from stage 1 to stage 2. BUT it turned out she was still stage 1 and the original sizing was correct - question what doesn't seem right as in this, you are your very best advocate. I was told US is more accurate than MRI but I am no Dr.

Post any questions you have - ER+ IDC is the most common type of BC, a good percentage of the wonderful people on here have that type of BC. We are all here to support you.

Hugs.

Skittlegirl

I don't hang out here very much since I am going through chemo and hang out there more.

marijen

Hi Englishmumm! Thanks for posting - I just finished going through all of my reports. To start I had mammogram, Ultrasound, MRI, CT scan and Petscan, the works.

April Dimensions show:

MR Breast WWO Contrast Bilateral @10 0'clock 4 cm from the nipple. 1.8 cmCC x 1.2cmAP x 0.6cm

RO office visit report repeats the same.

Pathology report: 10 o'clock 5cm from nipple dilated duct CATEGORY 4 (?) 16 x 7 x 10mm (not quite the same as first two above but close

October Dimensions show:

MA Digital Mammo Diag Right previously 9 x 10 x 5mm (this is the first discrepancy, now 4 x 3 x 5mm.

As you can see suddenly my original "IDC" mass has gone from 1.8 cm to 9mm. Meaning that instead for my mass shrinking by half - it has shrunk by 2/3 or else the most recent measurement is wrong.

Thanks! Please let me know what you think soon. I'm trying to figure out if I should say anything and to who?

marijen

Dear gremx003, I don't find much use in crying. Do you need help putting your dx and tx into your profile so others can help you more? Did you get any help at the Canadian forums? Do you have anyone to help you at home?

gremx003

Dear Marijen.

I just want to stop crying....working hard at it...it is not all the time just today I am depress...  yes I would welcome help for the profile.  Not much on the Canadian one....right now the only place I get advise/support is here...

Thank you

Marie.