Stage 1b grade 2, IDC,ER+ PR+ HER2-. PLEASE HELP MY MOM

jgio2960

Hi all,

I am writing because , my mom was recently diagnosed IDC grade 2 stage 1b, ER+PR+ HER2-. BRCA1&2 negative. She recently underwent a double mastectomy rather than lumpectomy solely for peace of mind. Doctor originally said he did not think it had spread to lymph nodes. He removed two lymphs. One was positive for micromet, the other was negative. The rest of her breasts were biopsied and nothing was found. Her tumor was 1.7cm.

We are going for an apt at sloan with Dr. Jose Baselga this Tuesday. Please pray we get some answers.

Just wondering, has anyone else gone through something like this ? Im struggling and want to do all that is in my power for my mom. She is my whole world and she needs to live. Please help

Moderators

Dear jgio2960,

Welcome to the BCO community. We are sorry to hear of your mom's diagnosis and glad that you reached out here. Here is a link to more information on our main site about Understanding a Breast Cancer Diagnosis.Perhaps this will give you more information and help shape some questions for the doctor. You also may want to check out our forums for Caregivers to get support from others who are supporting a loved one with cancer and get ideas for how to both cope yourself and be a support to your mom. We are sending your mom healing thoughts. Keep us posted.

Hopfull2

hi jgio, I'm so sorry you have to go through this with your mom. I too went through this with my mom but unfortunately my mom was a later stage. But I was diagnosed with stage 1a. I'm sure the Drs have told you they caught it early. Make sure the breast surgeon sent in for the oncotype test. That will give the oncologist his answer if she will need chemo or not. It's a test done for early stage BC. To see if she will benefit from chemo or not. You guys will get through this. She seems to have great support by you and that's what's most important is the support.

Hug

jgio2960

Hi Hopefull2,

Thank you for your support. It means the world in such a dark point in our lives. Truthfully, we were trilled when originally told us they thought her nodes were negative. It gave us hope. They removed two lymphs accidently because they were attached. One presented positive for micromet other was completely negative.

The lymph involvement news was the worst part about this whole process and has me second guessing everything now.

Hope you are ok. sending many well wished to you.

jgio2960

Thank you for the support sending many well wishes out to all who need

letsgogolf

jgio2960 Your mom's situation sounds very similar to mine. I was stage 1, grade 1 and also had a micromet in 1 node of 8. My Oncotype score was extremely low at 3 and so I did not need chemo. I will be on Arimidex for at least 5 years. I suspect she will receive this also. Some believe that node radiation is a good idea in her situation. I have read studies in favor of and against node radiation so you may want to check into this. Best wishes! Do you know her Est., Prog., and Ki67 levels?

jgio2960

hi letsgogolf!

Yes my mom is grade 2, er+ 90%, pr+ 30%, ki-67 10%.

How are you doing now ?

letsgogolf

Sounds as though your mom has a great prognosis. I am doing well. About to finish up last 4 radiation boosts this Thursday and then I will start Arimidex for at least 5 years, hopefully longer. Hang in there! This is all very stressful I know. Keep the faith!

jgio2960

happy to hear you are doing well. Thank you for the support. Please keep me updated with how you are doing. I am keeping you in my prayers

WenchLori

Hi jgio, how are you and your mom holding up? Any news on when your mom will start treatments etc? Has she also joined the BCO Community as well?

As for the oncotype test I didn't have one done and I still had chemo and radiation. My MO and RO said that I had positive lymph nodes and I also had Papillary Characteristics which is very rare, so it was highly recommended that I have the chemo and radiation. I'm praying your mom won't have to do either with catching her BC so early 🤞🤞🤞

Sending up extra special prayers for your mom and you. Gentle healing hugs also.

jgio2960

Hi Lori,

Thank you so much for your kind thoughts and prayers. It means more than you know. As for her treatment plan we do not know yet. She has an appt with Dr Baselga at Sloan tomorrow.

She hasn't joined yet I keep asking her too but she is handling this very hard and still in pain from her mastectomy. Truth be told mom isn't the most tech savvy person either lol hoping to have her get connected soon.

How are you doing with treatment /feeling ? Sending up some special prayers for you as well

WenchLori

How are you and mom doing? I pray they get her schulded for her treatments soon. The wait is the worst part of all this BC crap.

I had a follow up appointment with my MO yesterday. I started on Arimidex last night so I'm keeping my fingers crossed no serious SEs from it. My MO set up a consultation appointment for me to have my port removed. It's been my closest friend for the past 10 months but I'm glad to have it out. MO feels my prognosis is very optimistic, but I'm going to keep all things BC in perspective.

Blessings to you and your mom, you are in my prayers always.

jgio2960

so so happy to hear you are doing well. Please keep me updated if you discover any side effects with meds.

Mom is doing better, she went to Sloan yesterday and they are very optimistic with her prognosis. We are still waiting for her oncotype to come back so no play of treatment yet hopefully we know within the next week or so.

Sending lots of prayers hugs and support over to you. BC sucks but strong support is at least something positive out of a crappy situation.

Hop3ful

Hi...I feel how you feel.  January this year, I was diagnosed with BC (tumor was the same size as your Mom's - 1.7cm) after I brought up the issue of having pain in my left breast.  I could have done lumpectomy but my husband and I decided to do mastectomy even before meeting my surgeon - also for peace of mind.  Per my surgeon's adv., it was a great decision as my pathology report came back showing 3 other more tumors ( 1 of which was benign).  My BC was similar to your Mom, i.e., Stage 1B, ER+/PR+/HER2-.  I also had a sentinel biopsy and report came back showing a 0.6mm metastasis.  My surgeon explained to us different options: First was complete axillary lymph node dissection, which is an aggressive approach, to remove lymph nodes to and have them biopsied to see if cancer did spread; Second option was not to have dissection and possibly have radiation and treatment.  My husband and I went aggressive, again for peace of mind.  I had 15 lymph nodes removed, and thankfully, 0/15 showed no evidence of malignancy.  I was referred to my Oncologist and it was further explained to my my diagnosis and confirmed my BC stage.  He ordered Oncotype of my BC and to determine my risk recurrence score and be the basis of treatment - whether there's a need for chemotherapy, radiation/chemo, hormone therapy/chemo/radiation, etc.  Based on my Oncotype score, I did not need chemotherapy.  According to my Oncologist, a score of 11 or below is good - sign of low recurrence.  It was mentioned that most recent studies show score of 18 or below to be low risk.  I was referred, though, to a Radiology Oncologist to assess need of Radiation.  My RO said radiation is not necessary due to 0.6mm micromet.  The benefit of having radiation is not substantial or will not materially make a huge difference.  Based on these results/finding, I was prescribed to take Tamoxifen 20 mg, once a day, for the next 5 years and see my Oncologist every 4 months.  

Has your Mom done a genetic test?  How about Oncotype?

Let us keep on trusting the Lord and never lose hope.  Let us stay positive and hope for the very best.  Be strong for your Mom...we will fight the battle and come out victoriously!

Best wishes to your Mom and to you, too, my dear!

jgio2960

Hi Hop3ful,

Thanks so much for your respond back. Wow so very similar to my moms case. My mom also has additional tumors all of which were F.As.

We did do the oncotype score and are waiting for the results. The first oncologist we went to did mention a removal of more lymphs but the one at Sloan suggested against it since the second closest node which was accidentally removed was negative.

Her new MO is amazing and actually helped to develope herceptin, he is considering running a mammaprint as well. Did you have this ? Also how are you feeling now ? Hope you are handing medication ok.

It's funny, when people ask how my mom is handing everything she says faith and people always are confused by this. Our faith in God has made the world of a difference in this Dark time. Praying for you

Hop3ful

Hi jgio,  honestly, i do not know what a mamaprint is.  I don't think i heard that from my medical team.  Lymph node dissection/removal is not really recommended if it was negative.  Actually, even if there was a micromet, it is not recommended because only one or very very few nodes are affected (because there are other treatments for this).  Removal of the same is an aggressive approach.  There is a site i saw online that explains when a lymph node dissection is really recommended.  If i see it again, i will let  you know.

I am feeling well except that of course some sensitivity and odd feeling on my left where the breast was taken out.  It is still numbed and I just finished my therapy.  Advise your mom not to "baby" the surgery during recovery.  It is nice to move the arm so as not to create cording and unfavorable scar tissue.  Moving it will expedite healing.  Whenever she's ready, the recommended exercises after surgery really helps.  

Looking back, I hope i also did double mastectomy already instead of just my left.

I haven't felt any side effects of the tamoxifen yet.  I am really hoping and praying there will be no negative side effects - only great effects.  All is in God's hands.  God is our greatest Healer...and yes, faith in God is very important.

Please do not hesitate to keep in touch.  PM me anytime.  

How is your Mom doing? Has she met her oncologist already?  What treatment is she going to have?

Take care...

jgio2960

happy to hear you are doing well.

Mom is doing ok, she did meet with her M.O, he started discussing treatment but there was an error on her path so he needed to figure that out first so we were delayed ......

they are still deciding if she needs chemo or not. I know it might sound wrong but I hope they give her the option for chemo to kill anything that is left over but it seems like they were leaning against it.

Keeping you in my prayers, lmk how the hormone therapy goes. Sending lots of hugs

WenchLori

jgio, any word on what was wrong on your Mom's path report? That sounds pretty scary. Continued prayers for your Mom, you and the rest of your family 🙏💜

jgio2960

Hi,

Hope all is well ! Yes it was so so scary there was a discrepancy because on the final report they left out her erpr so Sloan took that as not having hormone receptors it was terrible. Luckily the BS clarified everything for us and confirmed mom is strongly erpr positive.

Unfortunately we are faced with a whole new issue now because her first pathologist "forgot" to send out her slides for oncotype. This delays everything now because her new mo does not want to consider treatment without this score. Her new mo at Sloan is not happy over someone making this kind of error.... so until then we are waiting. June 27th we find out.

Blessing prayers and hugs to you

Falconer

Jgo, I've been reading your posts and hoping for the best for your mom. I have an 18 year old daughter myself.

The same thing happened to me regarding the oncotype test. It was so upsetting, as you know. But when I did finally get the results back it was low and therefore I was spared chemo. I hope the same holds true for your mom.

jgio2960

thank you so much, it means the world.

She is doing well. Just feel like we had a set back with the micromet and now this. We have received a few different opinions for mo's and they all say she is going to be ok.

Holding onto that faith and just want to move on from this nightmare.

Saying prayers for you and wishing you well

Falconer

Jgo- I also had micromets. 8mm in one of three sentinel nodes. As a result it was recommended I have radiation. That delayed my reconstruction but I'm now recovering from a DIEP Flap surgery last week. It seems like a long treatment path, of course, but it does feel like progress.

jgio2960

my mom actually had diep flap during her mastectomy because they were not anticipating the node involvement.

WenchLori

jgio, I never did get my oncotype score or I did and I don't remember it?? My BS told me I wouldn't need chemo or rads after my DBMX. My oncotype score wouldn't have made much of a difference to "me" as my BC had spread to 2 of my lymph nodes which means chemo and rads. I wouldn't have changed my treatments even if I knew my oncotype. I'll have to ask at my next MO appointment.

I'm sending a huge amount of gentle healing hugs and prayers for you, your Mom and the rest of your family. 🙏🤗

jgio2960

Hi Ladies ! Just wanted to give you a quick update. Oncotype came back this morning at an 11! We are beyond happy about this. Chances are no chemo, but radiation. Thank you all for your loving words and support during this time. Prayers make. Difference and so does Positive attitude

WenchLori

jgio, that is awesome news! My prayers and positive thinking will continue for both of you 🙏💜

jgio2960

thank you so much ! I will continue to pray for you

Falconer

great news