so lost, need help with my new diagnosis

tshire · July 2015

I know. It's just so hard not to go there. I want to be cautious and vigilant and advocate for my health. I just don't know what to do besides prophylactic MX if an MRI didn't see it... I guess there's nothing else to do.

55sunshine · July 2015

Wishing you a speedy recovery from your upcoming surgery. If I can, please don't put your life on hold through this process. The future is worth fighting for. Gains much knowledge as you can and ask all of those questions that pop in your head. Ive had two needle biopsies I the last 6 weeks, both sides match now(lol), and I may have to have another mri guided biopsy next.

I also blamed myself for poor eating habits. It's not your fault. I have become vegan and if nothing else, I feel so much better.

Sending prayers, hugs and positive thoughts to you.🙏💪🏻 - stay strong

123JustMe · July 2015

Tiffany, I had that exact feeling like it was all a dream until I realized I was awake. Hugs to you.

tshire · July 2015

55sunshine, I also became vegan! I used to only a vegetarian (lifelong). Now I've also cut out dairy, sugar, processed carbs, alcohol, and soy isolate. Everything organic. Can't hurt right?

Thank you everyone for your support through the worst time in my life. I will update with more information after surgery.

PAYTONnPRESLEYSmomma · July 2015

Tiffany, I'm so sorry you've found yourself here but it sounds like everything is working out in your favor. I am not expert but I am also a young (34) woman who was recently diagnosed with DCIS and a small invasion of IDC. If I hadn't of went in for an ingrown hair in the opposite armpit this would of not been found. I thank god everyday for that ingrown hair! I have two little ones at home and was just as terrified as you. I just had my lumpectomy and SNB yesterday. I'm happy to report that I have had little to no pain what so ever. Suprisingly it was very simple and so do able. You will get through this just fine and be one step closer to kicking cancers ass and having the most magical wedding day ever. If you have any questions feel free to ask away or pm me. Lots of positive thoughts and prayers coming your way.

Jenny

tshire · July 2015

Wow, they found DCIS by palpating your armpit??

I found mine on my own, and I palpated it quite a bit because sometimes I couldn't find it and I thought it had gone away. I went to the Dr. after 2 weeks, and she scheduled me for a mammo a week later because she didn't think it was anything serious, and then the mammo was clean, and then the ultrasound found it.

God I have never been so scared.

PAYTONnPRESLEYSmomma · July 2015

No I was sent for an early mammogram because of the lump an ingrown hair left behind. My BC was found on the opposite side of that. Initially they saw calcifications on the mammogram and said just to be safe side let's biopsy it even though they were "fairly positive" it was nothing. Needless to say I was shocked when they called me back and said it came back dcis and idc. No palpably lump was ever felt.

PAYTONnPRESLEYSmomma · July 2015

No I was sent for an early mammogram because of the lump an ingrown hair left behind. My BC was found on the opposite side of that. Initially they saw calcifications on the mammogram and said just to be safe side let's biopsy it even though they were "fairly positive" it was nothing. Needless to say I was shocked when they called me back and said it came back dcis and idc. No palpably lump was ever felt.

Annie88 · July 2015

Tshire- I am sorry to hear you are going through this. The first couple of months are so overwhelming and emotional. In Jan. 2014 I had a mammogram that was clear, but I had arm and breast pain in September that same year. I went to the doctor and they reassured me not to worry, but did give me a sonogram. Sure enough there was a mass that later was biopsied, IDC stage 1 grade 1. There it was cancer, with no family history or reason. I had the BRCA test with negative results. Right away I decided to go to Houston, which is about 6 hours from my home. My I laws live there and have a close friend that is an oncologist, which I chose to see. She recommended the surgeon she would see if she was going through this. I decided to have the lumpectomy, due to it being less invasive and the rate of recurrence being the same. I have children that were already scared and I didn't want to add anymore by having drains and extended recovery. Everything went great with the surgery, I went home the same day. They removed 3 lymph nodes which were negative and also did the Oncotype test with a 5% recurrence rate w/ radiation and Tamoxifen. I did the radiation locally and follow up in Houston. There was no need for chemo as per the Oncotype results. The radiation went smoothly, really the worst part was the 45 minute drive. I have now been on Tamoxifen for 6 months with no great side effects.

Like you and many others I wonder what I could have done differently to prevent BC. I now eat as much organic as I can and live active and healthy.

You will get through this! When we get through it we are changed forever!

BarredOwl · July 2015

Payton: Glad to hear you are doing well!

Tshire: Iwill be thinking of you on Monday.

BarredOwl

Trvler · July 2015

Add me on to that list. I will be thinking of you Monday. Hugs.

Anonymous · July 2015

tshire, checking to see how you're doing. Thinking of you!

tshire · July 2015

Well, there was bad news and good news.

Good news: NO NODE involvement! Surgeon did a SNB with 3 nodes and all were negative. NO LVI! Still grade 1! Mitosis rate still 1, less than 1 mitotic feature per 10 HPF. All margins for invasive cancer were negative. Breast looks fine and is healing nicely.

Bad news: Somehow between the MRI and the surgery, the tumor became 2.6 cm (literally twice the size the MRI saw- 1.3). That puts me into Stage IIA (!!!!)
This is to me an odd finding because on the path report it reads "Specimen marked on the anterior aspect by an irregularly-shaped to crescent-shaped portion of skin, measuring 2.6 x 1.6 cm. Initial sections of the specimen show a tan ovoid, grossly circumscribed mass in the central aspect of the specimen. The mass is 26 x 16 x 10 mm." Does this strike anyone else as odd? That the crescent shaped skin and the ovoid mass are exactly the same size? Also I've never heard of an MRI reading being that far off. I called the surgeon about it, I'm waiting for a call back. I might also call the pathology lab and ask them to double check on that measurement. Maybe also get a second opinion.

Other bad news is that there was mixed type intermediate grade DCIS in the specimen, and one spot of DCIS on the inferior medial margin, which means I need another surgery to remove it. That's scheduled for Monday.

Waiting on Oncotype score.

BarredOwl · July 2015

Hi Tshire:

So very glad the nodes are negative, and you are healing well.

The size increase is an unwelcome surprise. I don't know how often that happens. As for the 2.6 mm measurement, it says it is located in the central aspect of the specimen. I suppose that it could be the dimension perpendicular to the skin? I think you have some good ideas for follow-up to go about better understanding that.

I agree a second opinion would be helpful, with a review of all your pathology slides from first and second surgery, together with the oncotype score when it comes in. That way you can get the path review and second proposal on treatment, which may be helpful to you in deciding next steps.

Will be thinking of you again on Monday.

BarredOwl

Anonymous · July 2015

tshire, happy to hear your nodes were negative!! That is great news.

Hope all goes well for you on Monday.!!

tshire · July 2015

Finding out about my Oncotype today at 1:30 CST, as well as whether the last surgery got out all the DCIS. Prayers for me please. I don't know how to stop being so scared.

Anonymous · July 2015

Sending prayers and gentle hugs your way tshire. Please let us know how it goes.

Trvler · July 2015

It's very common to have the size be different. I started with 2.9, then 3.5, then 4.6 and I haven't even gotten to surgery yet. Ugh.

So, all the other news so far is good. No nodes is great! Yeah!

Tomboy · July 2015

Tshire, yeah, trvlr is right! No nodes! Yay! that is terrific. of course you are scared, we ALL were. It will get better, promise.. Gentle hug

Beasly · July 2015

Hi Tshire,

I wonder if you aren't a little too hard on yourself for being scared. There's a Zen (or maybe Buddhist) saying that goes something like this "the soft grass that bows to the storm is stronger than the branch that strains against it and snaps". I don't think you can push your fear away. I think you have to sit with it, and tolerate it. Your fear will subside when it's ready, and not a minute sooner. If you are scared be scared, if you are sad be sad, happy be happy. It's reasonable to be scared, and probably means you are perfectly mentally healthy. If you try to stop feeling fear, it's like trying to make yourself crazy. It's sane to be scared about this. Don't make yourself crazy being afraid of being afraid. If that makes sense. :-)

I think there is every reason to think you will go through this dramatic year and then the Dr. will send you on your way for a full life of good health. You now know to pay attention to your body, your health, and will have this experience for the rest of your life, and experience is always enlightening.

Everyone is different, so I can only hope that my thoughts are helpful to you. I'm thinking of you and wishing you and all my sisters the best.

tshire · July 2015

You guys are really the best. I got mostly good news today.

First, they got it all out! No more DCIS or abnormailities. Clean margins. No more surgery for me.

And amazingly, there was a lab error on the original pathology- tumor was 1.3cm NOT 2.6, which puts me squarely into Stage 1A. I'm so glad I pestered my surgeon into re-checking with the lab. They accidentally measured the entire specimen, not just the tumor. I feel like they owe me flowers or something for the week of shock and despair when they originally staged me as 2a.

My Oncotype score was 20. Low-intermediate. My surgeon said with that score and other favorable characteristics she would not recommend chemo. But of course I'm going to be getting several MO opinions on this. She also ordered the Mammaprint test, so waiting on that.

Plus I am negative for all 17 of the breast cancer genes I was tested for (Ambry BreastNext panel).

Probably a subject for another thread, but y'all have been with me the whole time. With grade 1, less than 1 mitosis per 10HPF, no LVI, no nodes, Stage 1A, 98% ER/83% PR + and HER2 neg, but Oncotype 20 and Ki67 34%, would you do chemo? Oncotype said I had a 13% chance of distant recurrence over 10 years with Tamoxifen only. But I plan to ask for ovarian suppression and an AI plus Boniva for the first 3 years and switch to Tamoxifen for another 2. Then have a baby and do Tamoxifen for another 5 years. What do y'all think?

I really don't want to take unnecessary chances with my health as far as the cancer goes, but the long term affects of chemo scare the crap out of me.

Tomboy · July 2015

Tshire, that is the best thing I have heard all day! I am so happy for you! A.I.s and tamoxifen are very potent drugs, If I was you, I would hold off on any chemo. You are still a young woman, and don't need the damage! I am sure your docs will concur.

I wish I would have started with a is. If it's good enough for stage 4, it should be good enough for the rest of us. Thank G-d, such good news!

tshire · July 2015

Thank you so much for your support and prayers Tomboy!!

I plan to also go to MD Anderson in Houston, hopefully they can help with the decision. I wish the Oncotype score gave more predictive information for AIs + ovarian suppression, not just Tamoxifen. I would be on Cloud 9 if it wasn't for that pesky Ki67 34% and Oncotype 20.

BarredOwl · July 2015

Hi Tshire:

Great good news on the clean margins and actual size (1.3 cm). So glad you pursued that question!

Saw elsewhere you are going for a second opinion to MD Anderson. Hopefully, as you gather more information and obtain additional advice, you will get a better idea of what is right for you.

BarredOwl

Tomboy · July 2015

My ki67 was like 93 if I recall, I'm still here! Plus you are grade 2.

tshire · July 2015

Grade 1 actually. I was just reading about how my tumor could be considered "Luminal B" since it has the 34% Ki67, which is a type with a worse prognosis than Luminal A. But all of my doctors seem very confused about why I have such a high Ki67 in the first place.

Tomboy · August 2015

Oh, okay, I see the DCIS component was the part that was grade 2, that's good news. I am wondering where you found stuff about luminal B types. It was really hard for me to find info about it. The place that did my biopsy said I was luminal B, But the place I went to for treatment, really just refuse to answer me, and told me it didn't really matter as I would be getting the exact same treatment. But with the help of another woman here, I did find some info. I will try to dig it up for you, I am really really glad for you that it wasn't in your nodes! yeah, my tumor was pretty small, many of my nodes were bigger, and had burst. I'm still here, and feeling pretty good lately.

bythemarina · August 2015

I am so sorry about your diagnosis Tiffany. It is a shock and as already suggested, be kind to yourself and just take it slow ... one day at a time.

My initial response was panic, especially when the surgeon suggested that he would have to remove my nipple and areola. In hind site, I don't regret having had the procedure done but I really wish that I had done better and more research before I started making decisions about the way forward.

"What may break you, may also make you"

tshire · August 2015

Tomboy, yeah it seems like there isn't a really distinct definition. Some studies use Ki67 10-35% as the cutoff, some use ER/PR%, some use mitosis rate, some use grade, some use whether or not you're HER2+ to differentiate. So I don't know.

In my case, 2 different pathologists gave me a 1 mitosis rate, with less than 1 mitosis per 10 HPF. But my Ki67 was 34%.

I did ask a PhD molecular biologist why a Ki67 could be high while an observed mitosis rate could be low. He said there are many regulators of mitosis in the cell that control certain checkpoints that allow the phases of cell division to proceed. You may have one marker that says "ok, go" and that leads to Ki67 expression. But another checkpoint protein might say "stop", and then mitosis, despite Ki67 being high, does not progress. He says that in most cases the Ki67 correlates to the mitotic rate. But in your case, when they've actually seen the absence of mitosis under the microscope, and the Ki67 is the oddball result, it doesn't correlate. So it's perfectly reasonable that they will be different.

So he says Ki67 is a valuable data point, but it doesn't negate the fact that pathology shows that the cells are not actually dividing.

Tomboy · August 2015

Interesting, Tshire, veeeery interesting! I must be a weirdo to find all of this stuff interesting, but isn't it? I haven't had a chance yet to go looking for the links I have, I will try to do that tomorrow. Nice talking with you

so lost, need help with my new diagnosis

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