New Diagnosis--scared and don't know what to do

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2Mulligans-

We just want to welcome you to our community here at BCO. We're so sorry you find yourself here, but we're glad you've joined us, and hope you find the support you need. You are not alone, and it does get easier! We're thinking of you!

The Mods

Lillibelle

Hello and thank you to all the ladies who weighed in--it's such a comfort to know you are out there. And welcome and hugs to Girl53 and 2mulligans--I'm sorry you are also facing this.

I had my core needle biopsy yesterday and just got my results--one was a fibroadenoma and one was malignant. That's the bad news. The good news is that the two malignant places are close enough together that lumpectomy is back on the table. The new surgeon was pretty firm that if all three were positive, MX was a must. But just 2/3 are.

I re-group with her on Tuesday and she is going to mark on me where these places are to see if I can deal with it cosmetically. I think they are like 12 and 2 o'clock? I get confused about the o'clocks since they don't make sense to me.

I know there must be a lot more to it than can I deal with a divot. My nodes were clear per MRI. She will do SNB at surgery, whichever that is. I told her I was not OK with how sneaky this stuff is and wanted MRI followup and she assured me that would happen.

What am I leaving out?

Anonymous

Hi, I'm sorry Lillibelle that you haven't had a reply yet. I don't know exactly what you are leaving out, but let us know what happens. I can't see that you've met with an oncologist yet? Can you ask about the combination you have (as so many of us do, me included) of ILC and breast density? And 2mulligans, being PR/ER+ and HER2 - is a good thing. Much more treatable and stoppable because of options for hormone therapy, etc. Try to hang onto that for now. Your scans were clear! Another relief. If you search my name and go back a while, you'll see my first weeks of posts, and I was just like you. But we get through this and help each other. You will get through this, no matter what, no matter what the treatment is. Keep writing and letting us know how you are.

Claire in AZ

NettieQ

Hi all! I am 51 years old and diagnosed with invasive tubular carcinoma grade 1 and 1.7cm in size. I have had a mastectomy of my right breast, and four of my lymph nodes tested were clear. I am currently taking tamoxifen. During my breast MRI the radiologist saw a lesion on my liver and requested an ultrasound. After the ultrasound the radiologist requested an MRI and in two weeks I am having an MRI of my liver. Does anyone know the likelihood of this lesion on my liver being cancer?

NettieQ

Hi all! I am 51 years old and diagnosed with invasive tubular carcinoma grade 1 and 1.7cm in size. I have had a mastectomy of my right breast, and four of my lymph nodes tested were clear. I am currently taking tamoxifen. During my breast MRI the radiologist saw a lesion on my liver and requested an ultrasound. After the ultrasound the radiologist requested an MRI and in two weeks I am having an MRI of my liver. Does anyone know the likelihood of this lesion on my liver being cancer?

BarredOwl

Hi NettieQ:

I don't know the answer to your question, but here is link to a thread discussing "liver spots", which has been recently active. Try posting your question there. They know what you are going through:

https://community.breastcancer.org/forum/147/topic...

I'll be hoping it's benign, which is definitely possible.

BarredOwl

NettieQ

Thank you Barred Owl! Greatly appreciated!

614

How did the breast MRI pick up a spot on your liver?  I thought that the breast MRI only looked at the breasts???

The link that Barred Owl posted is very informative.

Since you had no nodal involvement and your invasive tubular carcinoma was grade 1, there probably is no correlation.  Tubular carcinoma is slow growing and usually is not aggressive. 

That being said, why do you have to wait 2 weeks for the liver MRI?  That seems like a long time to me.  The waiting and not knowing is awful.  I am hoping that your liver is benign.  I am sending you hugs. I am wishing that the 2 weeks go by quickly for you and that you won't stess.  Good luck.

NettieQ

I'm not sure how the breast MRI picked up the lesion on my liver. I live in Canada and I have to wait for an appointment in our public health system to get an MRI appointment. The lump in my breast was found in January 2015 and I didn't have my lumpectomy until June 2015. It's the system. Since January I had three biopsies, a lumpectomy and a mastectomy on July 31st. The breast MRI was in May and I am only getting an MRI for my liver now in two weeks. Yes I am concerned and I hate the waiting game. Thank you for your kind words!

Optimist52

Hi Nettie

My breast MRI also picked up liver 'lesions', however after a PET/CT scan they were found to be harmless cysts. The breast MRI shows the upper torso and my doctor told me that this sort of thing often happens as we all have various cysts etc. in our bodies. Hope you are able to keep busy and distract yourself during your wait.

614

I am so sorry that you have to wait so long.  That is excruciatingly stressful.  Good luck getting through the waiting period and I hope that the lesion on your liver is benign.

 

I didn't realize that the MRI sees the upper torso as well as the breasts.  Does anyone know if the MRI visualized the lungs?

Racy

Hi to the newly diagnosed ladies. Next week, I will be a five year survivor !

The discussion here contains heaps of great advice.

I was 48 when diagnosed and have cystic breasts. I had a lumpectomy, chemo, radiation and am taking Femara for 10 years. The thought of mastectomy horrified me and I am so glad that I didn't have to do that.

It is so important that your doctors are up to date with the latest treatments for bc and that you have faith in them.

It is a hard road but I hope five years from now you will be where I am!

MrsDarcy

Lillibelle - have you had any updates ? Decisions made ? Please keep us posted .. !!

Hugs,
MD

Anonymous

Hi Racy, congrats! Here's to 50 more years!

Nettiq, livers seem to be hypersensitive to all kinds of scans. I have a friend who is 8-10 years out from two Stage IV dx of ovarian cancer, which is much more deadly. She's fine, but her scans often reveal some liver thing that has to be biopsied or re-scanned. Always comes back benign. Let us know what the outcome is but the first reports are often suspect--so don't believe it for this go-round.

Claire

Lillibelle

Hello Mrs. Darcy and everyone else--

Thanks for asking--I had to step away from here and other sites because of anxiety eating me alive.

I had a lumpectomy on the 8th. Path results were negative for lymph nodes, but positive for tumor margins. I meet with oncologist and surgeon tomorrow but on phone surgeon thinks more lumpectomy still an option.

Haven't seen the final path report but from memory on the biopsy, it's a weird tumor (apparently according to my radiation oncologist) ER+ (way, like 91%) PR- (don't remember #) HER2-, the Ki # was 2% I'm not well-versed enough on what this makes it so weird.

Racy

Hi Lillibelle, it's not uncommon to need a second surgery after lumpectomy. I had a second lumpectomy to gain clear margins and was fine.

Your oncologist will discuss the implications of your pathology report with you. It is 'good' that your cancer is highly Er.

Let us know how your appointments go.

MrsDarcy

Thanks for the update Lillibelle. I totally understand the "brain overload", Sometimes you just need to step back and compose.

If you can, please keep us posted - we are here for you

Good luck today with your onc and bs appointments today !!!

p.s. - our operations were on the same day, albeit 2 years apart

Leslie13

Hi all,

I wanted to add my treatment and results if it helps. I was diagnosed with ILC both breasts in May 2015. Grade 2, but to know you have 4 tumors total is pretty frightening.

Since I'm post-menopausal, I was told taking neoendocrine therapy (Femara) would shrink my tumors and protect me from further spread of cancer. They did that for 6 long months before surgery.

Since I was losing both breasts, I asked to have a nipple sparing, straight to implant BMX. Since I wasn't that large, and had excellent surgeons, my results have been great. I'd encourage others who qualify to consider doing the same thing. There's more pain up front, as you're at your final size, but that gets better. My breasts match, and I can tell I'll have an excellent cosmetic outcome. My scars are underneath, so I look more like an augmentation. Best thing is that I have no more Cancer. Nodes were negative.

I was too small to consider any lumpectomy, but am very pleased I made the choices I did. Just make sure you have surgeons who specialize in breast cancer and reconstruction with tons of experience, as nipple sparing can be a big problem in the hands of a novice. It's two weeks and I have complete feeling in one breast. And although these aren't my girls, I think they'll do.

Lillibelle

Hello all--hope everyone is doing well--

Oh, the highs and lows of this beast! Saw my oncologist in the morning--she is very familiar with ILC, that I was her 7th ILC that week, so she agreed it was funky.

She's ordering oncotype but does not expect it to come back positive with my very low KI-65 of 2% and other markers including the tumor size which said 1.1 cm and she calls it Stage 1. She noted there was also some LCIS. We discussed hormone therapy and I asked about oophrectomy since I am prememopausal with severe endometriosis.

Then I saw my surgeon in the afternoon and actually get to read my path report: It reads

Tumor size, invasive component: 1.1 cm Multiple additional invasive foci in 10 consecutive levels: 3.5 cm

So, according to surgeon, the tumor size is 3.5. Stage 2

Is this bizarre? Surgeon says pathologist wrote the report badly.

I'm concerned that what looked like two smaller tumors of about 1 cm turned out to be a 3.5 cm mass that did not appear on MRI. I hate this cancer!

She dubiously says we can resect, but she is worried that margins will again be positive, at which point I would get a MX as my choice.

She thinks I won't be happy cosmetically with lumpectomy after radiation (tumor at 12/1 o'clock) but I may get a reduction in other breast to match. I've always been largish 36C/D and I'm short 5'3" and would be fine smaller.

Today I'm calling back my original surgeon and ask what he thinks and also the oncologist and ask if a larger tumor/Stage 2 affects her treatment.

I really hate this new job I have!

614

Dear Lillibelle:

Good luck.

Believing2626

Hi, this will be a year since my diagnosis and mastectomy . All I want to say is to try to keep faith and know that it does get better. It doesn't seem like it does in the first days and months that follow that diagnosis. But each day you grow and become very knowledgable in this new journey of our lives. So most important have a great oncologist that you trust. There are ups and downs, I tried to focused on the ups,it helps. Peace

Lillibelle

Thanks all, congratulations to the survivors and thank you so much for reaching out. It means a lot. For everyone in treatment, I hope the arrival of fall brings you the joy it does me. I'm in Texas and it just now feels OK to be outside in the afternoon.

That was definitely a hard day. The oncologist apologized for the error in reading the path report (it is rather unfortunate the way the text broke with the size of the area affected) and says that it doesn't change the treatment plan pending Oncotype results.

I was able to see my diagnosing surgeon who I know the best and has the best people skills and asked him if I was pushing the envelope on another lumpectomy given the size of the mass. He said no. He's pretty honest. He then said he had a lot of patients that had lumpectomies that he considered to be cosmetically not successful but they were happy and that's all that mattered. He did 5 (!) on one woman who wanted it.

Leslie13

Lillibelle,

I can only share with you what I've learned since being dx'd with ILC stage 2A 6 months ago. 1) the tumors are usually larger than what shows up in imaging; 2) ILC grows in branches or like spider webs so a lumpectomy usually isn't advised. I was glad to have one bi-lateral mastectomy as opposed to always worrying about it. There's a good likelihood you'll be disfigured by the time they get clear margins, as your surgeon said. This growth characteristic is one of the reasons it's not detected until fairly large. 3) you can have a good result from a mastectomy. I'm healing from a double nipple sparing straight to implant. Not everyone can have it. You need to be a C or smaller and not size up much, otherwise it's expanders. A Flap may work better for you. I was happy with my breasts and knew I couldn't handle months of expanders. ILC is so sneaky and prone to metastasis that I wouldn't think of breast conservation.

Unfortunately, 3 weeks ago I was told my lymph nodes were negative after surgery which never made a lot of sense considering I had two 3.2 cm in one breast. I asked for more studies earlier, but they waited for surgery. Today I found out I was positive and going back to surgery to have them taken out and will be having stronger chemo than Femara. To any post-menopausal women, I'd caution you to get multiple opinions if they recommend 6 months of Femara alone before surgery. There's a study out there testing to see how well Femara works alone against ILC and it's wide spread (multiple locations). Don't consent to it. My treatment was delayed and I should have had a bi-lateral mastectomy much earlier. I don't know much about treatment for pre-menopausal women.

I'm not presenting the rosiest of pictures because of getting the bad news today. My Oncotype was 17, but when my surgeon did a more complete assessment today with the pathology results in, it came back saying I had a 44% change of recurrence. the truth is, I think my Dr's were overly positive and I was under treated. For a positive: The new girls look better than I expected, just are still very painful.