Diagnosed IDC - Now What

Warrior2018

You are not a nut job. I think in general surgeons are, how can I put it nicely...a unique breed of people. I think they have no bedside manner at all. They leave that to the other Drs.

Schweety

Being I had DCIS 18 years ago and now have been dx with IDC. I am wondering about an MRI....who orders those....should I ask about it. What is the criteria (if any) qualifies for an MRI. I read that an MRI can detect things before mamo's. Or am I over thinking this? I hope I remember to ask the surgeon tomorrow. I know I would feel better if they would do one....I keep thinking what if more cancer is lurking there or....in the other breast that the mamo didn't pick  up. 

nonomimi5

Schweety - I had a MRI after the biopsy but before the surgery. It was ordered by the surgeon.

Lula73

Schweety- my local bs ordered my mri after the radiologist told him to. If not for the mri who knows how far advanced my cancer would’ve been since it was only calcifications in the other breast that showed up on mammo. With your history I wouldn’t think you’d get much pushback from the bs on ordering one.

NotVeryBrave

I had an MRI after the biopsy and diagnosis but before treatment began. The BS ordered it. They can sometimes show things that aren't there, but generally it's good to have one more imaging modality before the surgery decision is made.

Schweety

I saw a new surgeon this morning …. I really liked him. He was very calming and thorough. He suggested genetic testing where the other dismissed it and said he didn't think it was necessary. The new surgeon's office called after I got home and said they want me back in the office at 8:30 to have the genetic testing done. I will go over paperwork, sign and go to the hospital lab. I am impressed at the maturity of the staff at this new doctors office as well. No giggly young girls just young and older women who are very professional, kind and courteous. The doctor looked me straight in the eye when he spoke to me and was in no hurry. I was there for about 2 hours. I feel calmer and more ready to fight again. 

He explained to me that the genetic testing will give us more information in order to make a more sound decision on how to proceed with treatment. He said if the results are that I have the mutation, then the chance of cancer returning are about 90% so I might reconsider mx. because of my age and health conditions I am probably not a good candidate for radiation or chemotherapy Soooo, that put a whole new spin on things. And gave me much to think about. 

Thank you again...for all of your encouragement to find a new doc and for all the other words of wisdom. I needed them all. I am very grateful for this community and these boards. Thank you again...I will continue my dialogue with you all, if you don't mind....just typing thoughts and questions down...helps.  

nonomimi5

Schweety - That's great the new dr spent a lot of time with you and you have a better picture. Do you have cancer in your family history and of Jewish ancestry? I didnt take a genetic testing b/c I have no family history and no Jewish descendant. I hope the test comes back negative. Sending prayers your way.

mustlovepoodles

Carol, it sounds like you found a winner. If I've learned one thing about this breast cancer business its that i dont need to get in a big fat hurry. There's time for second opinions and careful consideration. Definitely take time for the genetic testing.

I wish i had slowed down a little. My doctor recommended the 5-gene test, which had the BRCAs and 3 other of the most common genes. My genetics counselor also recommended that i have the larger 32-gene panel because my family history is rife with many cancers. When the first panel came back negative, we celebrated. The second panel was primarily looking for cancer genes th hat caused colon, pancreatic, and thyroid cancers. Thinking that was that, we went forward with the lumpectomy.

What a disaster. I won't go into details about the surgery& re-excision, except to say i had multiple complications and a serious infection. But when the second, larger gene panel came in my doctors were shocked to learn that i actually have TWO rare gene mutations which cause breast cancer AND every cancer in my family tree! Those breasts had to GO...but first i needed chemo.

So, 6 weeks after chemo ended i had the BMX. My recovery went sideways, healing was a mess of complications, and all i could think was, "if only i hadn't been in an all fired hurry." If i had waited 2 more weeks until that secone gene panel came back, i could have had the BMX right out of the gate and avoided two unnecessary surgeries and all the complications that they caused.

Warrior2018

Sheeety- So glad you’re feeling better and you found a surgeon that you feel comfortable with!

nonomimi5

Mustlovepoodle - I can't believe everything you went through. Can you explain what the 2 gene mutations are? PALB2 & Chek2 ? Is gene testing something everyone should get?

Schweety

Nonomimi5, my father had colon cancer, my mom had ovarian cancer and melanoma, my sister had uterine cancer, my mom's sister had breast cancer in her 40's, her daughter had ovarian cancer another of my mom's sister's daughter's had breast cancer. I do not know of any Jewish decent in our family tree. My mom used to say my dad was Jewish...but we didn't know for sure.

nonomimi5

Schweety - I am so sorry for your family's battle with cancer. You did good to take the genetic testing and wait for the results. You will be in my prayers.

mustlovepoodles

nonomimi, i have the PALB2 and Chek2 mutations. Both are fairly rare, much more uncommon than the BRCAs. Everyone doesn't necessarily need genetic testing. In my case, there are over 20 cancers found in my 1st and 2nd generation family members. Clearly, something was going on. My genetics counselor believes i got one gene mutation from each parent, based on the types of cancer. She isn't sure how having these two mutations affects my future risk, but its probably safe to say it isn't good. Of course, i have the benefit of having close surveillance now, unlike my poor grandparents.

Schweety

Nonomimi, , Thank you for your prayers....and God bless you for praying for me. We go see the surgeon again this afternoon....I am very scared. Being older with underlying health issues already...it very scary. I pray I make the right decision as to what surgery to have. 

Schweety

Mustlovepoodles ~ God bless you....I just read your bio....2 or 3 or 4 surgeries in a short amount of time. May I ask, why in the world they just didn't do just 1 mx or double mx at one time.  I am really scared. Thank you.

Schweety

Ok...I have had the lumpectomy on Thursday. All went fairly well, except the guide wire had to be reinserted as it fell out. But I am confused. My genetic testing came back negative..YAY!!    BUT is that the same thing as genomic testing?? And do they automatically use the genomic testing?? And what exactly is it? Help!!!

moth

Genetic testing is the testing they do on you, through a blood or saliva test, to determine whether you carry any known cancer causing mutations.

Genomic testing is what they do on the tumor sample, to determine the risk of recurrence and the risk/benefit of chemotherapy. Whether you get genomic testing depends on the type of tumor & whether you meet the criteria for the testing.

Schweety

Thank you Moth.  What would be the type of tumor they would do genomic testing on and what is the other criteria do they go by? Do you know and if you don't know....how could I find out? 

Thank you so very much.

Schweety

I posted a question the other day...I wonder where it went as I do not see it here.

moth

You can read the mammaprint criteria here: https://www.breastcancer.org/symptoms/testing/type...

OncotypeDX criteria are here: https://www.oncotypeiq.com/en-US/breast-cancer/hea...

additionally your insurance company or cancer center may have its own eligibility criteria

Schweety

Thank you so very much.

Schweety

Here I am AGAIN??? Lost and confused and scared......

I had dcis in May of 2000 lumpectomy with rads, July of 2018 idc, lumpectomy but hormone blocker side effects made me stop within 2 months. Monday had a mamo with follow up diagnostic mamo and then ultra sound. Doc said 1 cm area of concern he would suggest biopsy. What the hell????? This area in no where near the other 2, it is down under the nipple almost behind the nipple. Isn't this a rare spot for cancer to show it's ugly head?? and so soon after the other cancer? Considering my age (69 come Monday) and the fact that my Oncotype dx score was a 1, clear margins, no node involvement, small 1 cm mass and her2 positive....I am considering not having the biopsy. 

Beesie

Schweety,

Until you have a biopsy, you don't know that this new area of concern is cancer. Given the location, it could be a intraductal papilloma, or even a small cyst. I'm in my 60s and have had both of those.

The Oncotype score is specific to distant recurrence, i.e. metastatic recurrence. A local recurrence in the breast is a different and separate risk, not measured by the Oncotype test. That said, if this is breast cancer, given that it is in a different location of your breast, it could be a new primary, not connected to your previous diagnoses. The risk to develop a new primary is yet another different and separate risk, also not measured by the Oncotype test.

You mention that your previous diagnosis was HER2+. I thought that HER2+ cancers were never sent for Oncotype testing because HER2+ is so aggressive that for tumors over 5mm (and often, even for smaller tumors), chemo and Herceptin is always recommended. My understanding is that if tested, the Oncotype score for HER2+ tissue will always very high. So very odd, but good news, of course, that your Oncotype score was a 1.

Have you decided on whether you will have the biopsy?

Schweety

Hi Beesie….

Thank you so much for responding....It helps me to bounce things off of other people and I don't feel so alone or in the dark as when I had DCIS in May 2000. I made an error, my last biopsy showed Her2 neg. not pos. I am sorry for that error! Gee and that was a biggie for sure. 

I still haven't decided about the biopsy. I just don't know....but I probably will because my husband thinks I should. 

Beesie

Phew! Glad to hear that your previous diagnosis was HER2-, Schweety. Now the Oncotype score and your treatment makes more sense.

Personally I would want to know what I'm dealing with so I would do the biopsy, otherwise I would always wonder and worry. It's very possible that this is benign, and then you can just keep moving forward and hopefully put breast cancer behind you. And if it's not, a biopsy will tell you how aggressive - or not aggressive - the cancer is and you can decide from there what you want to do. Good luck!

Schweety

Thank you Bessie!  I plan on going to the Radiology place tomorrow..the 20th...my birthday and get a copy of the report, if they have it. The ultra sound with diagnostic mamo was done on Friday afternoon. so I'm not sure it will be ready but I am going to try. I want to find out if there is blood flow to it and what the birads score is. That will help me feel more knowledgeable and more in control... just taking some strangers word that I need a biopsy is kind of frightening. I know they hurt! I had multiple biopsies throughout the years from stereotactic to needle core they all hurt! Sting and burn and then where it is located..a lot more sensitive there...so yea....I need to know why they are bent on wanting to do that again. Like my husband always says to me...You are such a big baby! And he is right...I am, I can't help it. I don't like pain, stinging or hurting of any kind. It is unnatural! lol

Salamandra

Everyone has a different pain tolerance and different tolerance for different things! I bet there's stuff you tolerate much better than your husband I think sometimes that too many women tolerate too much pain, and maybe if we all got together and made a fuss, medicine would actually take it more seriously.

I think it makes sense to do what you need to do to feel physically *and* psychologically in control. I would also not be able to resist getting the biopsy, but you need to do things your way.

I wonder if it might also be possible to find a radiologist to do the biopsy who would be more understanding and work with you on the pain a little more.

edwards750

Schweety - like Salamandra said everyone has a different pain threshold. For the record biopsies can hurt. Mine did. I can’t stand to have blood drawn so you know what my pain tolerance is. I’m no martyr if it’s gonna hurt I want to be prepped for it. You are not a big baby. From my experience men are typically the big babies! So there.

The only thing I will offer is don’t not do the biopsy because it’s painful because it’s usually also necessary. The process isn’t pain free from start to finish.

Good luck!

Diane

Schweety

Thank you, Salamandia and Edwards 750!

The biopsy is scheduled for May 31st. Yea....I am really scared even though I have had 3 of them before. I know they hurt kind of...but I never had one done down there where the nipple is....OUCH! 

Thank you to everyone who is so kind and helpful.