Just joined and just diagnosed......I am so scared!

staystrong1

If anyone out there can read this & give me your feedback that would be AMAZING. Got my biopsy results and the Dr. (breast surgeon0 not an Oncologist, told me that I had to have a double mastectomy! These were the findings of my biopsy:

1. Invasive and In Situ Lobular Carcinoma (Final Diagnosis)

2. Nuclear grade 1 of 3.

3. Largest Focus of Invasive Carcinoma in this submitted biopsy, 0.06CM

4. In Situ Component (LCIS) Represents Less than 5% of the tumor.

Estrogen Receptor: Positive 47% moderate intensity

Progesterone Receptor: Positive 57% moderate intensity

HER2/NEU: Not over expressed (1+ of 3+)

Ki-67: 10% moderate intensity

I have an appt with a surgical oncologist next week but I am so nervous I can't stop thinking that I am not going to love to see my boys (2 and 5 years old) grow into men. I am staying strong and have an amazing hubby but I'm still very scared.

Can anyone give me an idea of what you think? I know we are not Dr.s but just hoping that someone out there can relate if you've been through this or have had a similar diagnosis. We want a second biopsy to be 100%.

Thank you in advance,

Staystrong1

beacon800

I have some questions about your report, but the main thing is this:  the LCIS is not the most important feature.  The invasive lobular (meaning not LCIS) is important as that has the ability to spread whereas LCIS does not.

They mention that the invasive component is very small ( in fact, so small that I would ask t to make sure).   That is good news.  They mention that the LCIS is only 5% of the tumor.  So my question is, what is the REST of the tumor composed of? 

Your grade, 1 of 3 is also good news.  That means your cancer is not a fast growing one.  The estrogen/progesterone receptors are postive which is good as it means you can take hormonal therapies to control future recurrance.  HER2 negative is also good,  your tumor is not aggressive.

As for the double MX, I would ask specifically why that is recommended.  It is certainly an option but unless your tumor is very large or you have a poor family history or deleterious gene, you may be eligible for breast sparing surgery (lumpectomy).  So if the idea of double MX is very scary, get more info, you may not need that.  Plus, if the area of invasive cancer is really only .06cm, it's not going to get you.  You'll have the time with your kids.

Hang in there during this tough time.  So far the news looks as good as it can (considering).  (((hugs))) 

jenn333

Your path report from the biopsy is encouraging as beacon says.  Ki-67 is a favorable prognostic too.  That's how fast the tumor cells are dividing.  10% is low according to my UCLA MO (mine was 10% too).  Coupled with grade 1 and small, ER/PR+ tumor at this point you look like stage 1, grade 1 (won't know until final pathology though).  You should discuss an Oncotype test on your tumor which will help determine whether chemo would benefit you but based on your grade, small tumor, and hormone receptors, unless they find node involvement or a larger, more aggressive tumor on final pathology Tamoxifen will probably be your treatment of choice.

SimplyAudrey

The double mastectomy recommendation comes from having LCIS. LCIS itself is not cancer, but increases risk of developing invasive cancer in EITHER breast by about 20% in your lifetime.  Considering a SMALL amount of invasive LC was already found, the recommendation of removing both breasts was made.

BREATHE.  Your diagnosis is a pretty good one considering all (if a BC diagnosis can be considered good).  It's treatable, and curable.  Removing both breasts will significantly decrease your chances of having any recurrance.

Cancer is a scary thing.....but it can't destroy faith, hope, love, joy, nor who you are.

It's a rock in your lifepath.......do what you need to do, get all the opinions you need to make an informed decision, and BELIEVE all will be well.

Warm thoughts and prayers coming your way!

Audrey

dlb823

staystrong, as others have said, there are many things about your biopsy pathology that are extremely favorable, and really nothing that is overly concerning.

I'm not sure a 2nd biopsy will yield good info because chances are they've already removed the tiny invasive part of your bc -- another good thing!  What you might want though (depending on where your pathology was done) is to get a second opinion at an NCI-designated comprehensive cancer center, where they will go over all of your records including the biopsy slides & path report, and recommend treatment options.  Here's a list of those centers:

 http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html  

If one isn't very convenient to you, you can always take their recommendations back to your local docs.  But pathologists don't always see things the same way, so another opinion is always a good idea, especially if you have questions.

I know how shocking it is to get a bc dx, and I know it's impossible not to let your mind wander to the what-ifs.  But most women who are treated for early stage bc these days recover and do just fine, and from everything you've told us so far, I don't see any reason why you won't be just fine after tx.

So sorry you're going through this, but it gets easier once you have a medical team you really like and trust and a tx plan in place.   (((Hugs)))  Deanna 

auntiems3

Hi Staystrong,

I'm not sure how much information the BS gave you about breast cancer types, but this may help.  There are two types of breast tissue (3 if you count fat) ducts and lobes.  Most breast cancers are found to be ductal in origin.  A very small percent originate in the lobes...hence the LCIS, which is a marker of atypical (not typical) cells and also increases the risk of developing breast cancer in the future.  From your biopsy results, a very small ILC was diagnosed. 

Researchers in the field have indicated that ductal cancers typically do not re-occur in the same or the opposite breast, but what Audrey stated is true, the incidence for lobular cancers in the same and opposite breast is much higher. 

Fortunately, the tumor is very tiny, just think of it this way 2.5 cm= 1 inch, so yours is 41.66 times smaller.

Before rushing headlong into a BMX or even a second biopsy, send your slides to a pathologist who specializes in LCIS and ILC.  My BS sent my first biopsy off to David Page at Vanderbilt University without question. He is probably tops in the nation.

Second, you should meet with your oncologist with a well prepared list of questions.  It sounds like you already have a lot of the information, you just need someone to translate the terminology into something recognizable.

I know it's scary, especially since you sound more worried about your family that yourself, but hang in there and as Audrey said....Breathe.....and take one day at a time, one step at a time, and there are many people here willing to listen and hopefully, help! 

staystrong1

Thank you so much auntiems3.

All of the lovely ladies in this forum have given me a wealth of knowledge (including yourself) I am so antsy and counting down the days till this Thursday!!! My husband is going with me and we have a list prepared and he is going to take notes as well as ask questions. I would actually love to record the meeting. That way I can hear it over and over word for word for peace of mind. I wonder if the Dr. would allow that or is that illegal? Not sure, but I will ask him. Thanks to all you lovely ladies here, I have added questions in addition to what I have found on the internet.

This is a very scary and dark time in my life but I am determined to stay strong and fight this fight! I am on a roller coaster of feelings, one minute so positive, the next crying my eyes out, then upset at all of this!!! My biggest and only fear are my two boys! They are the LOVE of my life and I cannot bear to leave them alone and never see their beautiful faces and smiles again. They are THE reason I plan to fight. They are my reason to live.

I will post an update as soon as I can just to keep you all informed. I hope to have some encouraging news.

 Once again, I thank you and all the ladies that have taken time from their lives without even knowing me to ease my pain during this scary time. May God Bless each and every woman that is dealing with this or may have to deal with this in their lifetime and lets stay strong and win this battle!

Love,

StayStrong1

Infobabe

staystrong1

We all identify with you and have gone through those same emotions.  But chin up.  You are going to be fine and see those boys grown and on their own.

The next few months will be difficult, mostly emotionally, but a year from now it will all be history and then, on with your life. 

You are doing everything right.  You are prepared and informed.  This will go a long way to a happy conclusion. 

staystrong1

Thank you infobabe!

From your mouth to God's ears! Thank you for the encouraging words.

Many Blessings

auntiems3

Staystrong, You have nothing to lose by asking to record the Q and A, 50 percent chance he says....yes! I'll be praying for you, DH and your boys.

dlb823

UCLA, which was my second opinion BS & medical team, actually provides recorders and encourages patients to use them.  It's a very surreal time for us, and it's completely natural to zone out while doctors are talking.  Recording the appt makes perfect sense, and any doctor who treats bc patients should be aware of this.

Personally, I would run from any doctor that balks at this request.  They should have nothing to hide and nothing to fear from you recording what you're being told during a very stressful time.   JMO...  Deanna

staystrong1

Thank you. Prayers are so important and I appreciate that you will be praying for us.....

staystrong1

That is awesome! Yes, that's excatly what I did when the Dr. told me the news (zone out). All I heard was

 " You have BC......... Blah, blah, blah, Double Mastectomy, Blah, blah, blah, Tatoo your niples, blah, blah, blah........"

I even asked him if this was a joke?!?!?

Recording the session will be peace of mind and a better understanding of all of this!

Thanks doll. Many Blessings 

Anonymous

While it does put both breasts at risk, having LCIS along with the ILC does not  take away the option of lumpectomy (to remove the ILC). A bilat mastectomy for LCIS is a personal choice; it is NOT mandatory/medically necessary.  Just wanted to let you know you do have options. I had LCIS diagnosed 9 years ago; had lumpectomy, took tamoxifen for 5 years, still continue with high risk surveillance of alternating mammos and MRIs and now take evista for further preventative measures. My mom had ILC many years ago; had lumpectomy, radiation and  tamoxifen and is a survivor of over 25 years now  without any recurrences. The surgeon's specialty is surgery; the oncologist's is cancer, so talk with the oncologist about all your risks and benefits and different options for treatment. (and a 2nd opinion never hurts either) 

Anne 

loriio

I agree with Anne about 2nd opinions. I even got a 3rd opinion. Also, if there is a breast center at your hospital, I recommend talking with the nurse navigator. When I met with mine, she was able to walk me through the pathology report in terms I could understand. (I'm a CPA. Medical terms go flying over my head.). In the end, make sure you have a doctor you trust and make your decision based on your circumstances. We all have different backgrounds and pathologies so there is no one size fits all approach.

staystrong1

Hello everyone.

Just wanted to let you all know what's been going on. I saw my Onc. last Thursday and he examined me and said "clinically" no lymph nodes seem to be involved but because I have LCIS and ILC I would probablly benefit from a double MX. I could do a Lump with Rads and Tamox for 5 years but I have breast implants and the one will probablly harden and the breast will look asymetrical. Actually ALL of the Dr.s that have seen me have told me that my BI saved my life because this type of tumor likes to hide in the breast tissue and is VERY hard to find in mammos and ultrasounds. Talk about a blessing in disguise!

I took the BRAC1 gene test and we have to wait around ten business days for results. Today I do an MRI to have a better idea of what we are dealing with and come up with the best plan for me. He also sent my path and films to another pathologist for a second opinion. All of this before I even said a word to him!

I feel very good about this Dr. and he is so caring and peaceful! I googled him and his reviews are like no other!! He is called a "Humanitarian" and a "Saint" time and time again!!! He even works with you if you have no insurance.

I have been feeling a bit better, mostly when I am with my husband because he is my rock and he makes me feel like everything is going to be fine without saying much to me. Also, my close relationship with The Lord fills me with peace and tranquility.

Thank you for "listening"

Love, SS1 

staystrong1

Hi Lorio.

Thank you for your post. I see that you had a lump then a double mastectomy. Was it because the lump didn't clear it out completely? Also how are you feeling since your MX? You are almost two months in? I watched a Youtube video and a lovely lady shared her story and even showed her breast during the process. I just searched "life after mastectomy" on YT and I found her. It was hard to watch but helped to know what it was like.

I hope you are dong well.

SS1

C-squared

staystrong~ I used a digital voice recorder at all consultations with each doctor.., none of them had an issue with it.  It was extremely helpful just in case a question comes up the information can be reviewed.

I also had ILC and I am also BRCA+ (with an extensive family history), which is why I opted for BMX.  Sounds like you have a good oncologist on your side.  Do explore all of your options and you will ultimately decide what is best for YOU.., that's all that matters.  There is no one-size-fits-all answer when it comes to breast cancer.

Good Luck!

staystrong1

Hi C-Squared!

Thank you for your words. Yes, now it's a waiting game for me as I have already done the gene test and MRI; hopefully we can start a game plan soon. My MRI wasn't so bad, I did get a little anxious right at the beginning cause the sounds are so loud, my heart would race. However, I began praying and counting ALL of the Blessings that I have in my life and I was in total peace........

I appreciate you listening and giving me words of knowledge.

Many Blessings

SS1

loriio

Hi staystrong. I didn't actually have a lump-just calcifications so technically it was an excisional biopsy. There were no clean margins, which is normal for LCIS. The LCIS was high grade and I had very dense breasts. I got 3 different opinions and in my case, they all recommended PBMX. The MO at MD Anderson said he feared it was just a matter of time. He was right I guess. The ILC wasn't found near the biopsy site. I am meeting with my nurse navigator to go over my pathology and surgical report tomorrow.



I feel pretty good. I guess I am 7 weeks out. I am even getting used to the TEs. I don't love them but I am managing. I really could use a good massage though!

Best wishes for you going forward.

Lori

bluepearl

Everyone here has already given you correct information....you are going to be ok.....have a double mastectomy will decrease your chances of ever seeing this monster again by 90% and the reconstructions these days are amazing!!!!!

staystrong1

You are so right!! Thank you for your kind words ;-)