New DX of stage ll

iluvgsd5

I had my lumpectomy on 1/14 and unfortunately the tumor had spread into my lymph nodes and the size of the tumor was larger then they expected. I had 8 lymph nodes removed ad 2 are positive for cancer. They thought it was an early catch but not so much! I was told they are calling this Stage llB.

I was wondering if anyone can help with some words of encouragement that I can survive this. I'm terrified and can't stop crying! All I see is statistics of 75-82 % survival. I go see the MO tomorrow for my treatment plan and the RO next week talk about radiation. They also want me to go back into surgery next week to take more tissue, ugh!

Here is what I know so far from my pathology report, if more info is helpful I will certainly share it, just not sure what is helpful for some advise.

Pathologic stage pT2, pN1a

Molly50

Hi Jacqueline,

I am sorry you find yourself here. First, throw out any statistics you find on the internet. There are many treatment options depending on your diagnosis. We all go through the fear, crying and hopeless feelings in the beginning. It is perfectly normal. llB is still early stage.

I was diagnosed last June with estrogen positive breast cancer. I had a lumpectomy in July and had two positive nodes out of 9. I also had extensive lymph vascular invasion. My tumor was 2.1 CM. I ended up needing a mastectomy due to the amount of tissue my surgeon needed to remove and still didn't get clear margins. I am llB also. So we are not that different. Do you know if your tumor is estrogen, progesterone and HER2 is positive or negative? I had radiation after surgery and now take a anti hormonal pill every day. No chemo and my prognosis is good. Do you have an appointment with a medical oncologist yet? Do you know if your tumor was sent for the oncotype DX? That will determine your chance of recurrance.

iluvgsd5

Thank you so much for sharing, it is comforting to read your experience. I have estrogen fueled cancer. I am seeing a MO tomorrow to lay out a treatment plan and I do know that they did the oncotype dx test, which I will get the result on tomorrow. From my understanding that will tell me if I have a chance reoccurrence. The tumor they romobed was 4cm and they want me to come back next week to get some more tissue, very scared about that! It seems that I went from an early catch to be really freaked out!!!

Thanks for sharing with me Molly!

Nomatterwhat

I was in your shoes as well, J.  I was a IIB estrogen driven with no node involvement cancer.  I had a 6+cm tumor attached so close to the chest wall that an Onco score was not done on me.  I went through 4 rounds of TC chemo and 33 rounds of radiation and am on 10 years of hormonal therapy and here I am!!!!!!  I have been burned from radiation, bald from the chemo and lost both breasts, 4 toenails and have seen every kind of doctor you can imagine!!!  But, I am still here!!! 

I suggest that you take somebody with you to your doctor's appointments.  I am so glad I took my husband for my extra pair of ears, because every time I opened my mouth, tears would roll down my face.  That isn't me, my husband calls me "Yappy".  Keep us informed, you can do this. 

Optimist52

I am also IIB with two nodes with micromets. I am taking letrozole now, side effects tolerable so far. You will be prescribed hormone therapy which I believe is very powerful. I agree with Molly that getting an Oncotype DX is important to determine the need for chemo. This website has been a Godsend for me and many others, helps to not feel so alone. Family and friends etc. often don't "get it". I wish you best wishes with your treatment.

iluvgsd5

It is great to hear the well wishes and read other stories.

Meet with the MO today and my Onco test was at 32, that puts me very slightly into the higher risk for reoccurrence. Will be starting chemo first them radiation. I'm glad I have all the facts now but still terrified of it all, mostly chemo

DivePuppy

Chemo sucks, but you get through it. First treatment, though, is scary as the dickens, at least it was for me. Get a port if you can. It just makes all the treatment easier, imho. And have someone with you some or all of the time. Everyone has different side effects, even for the same treatment. Your MO will probably prescribe something for nausea, like Zofran. Report other side effects to your MO asap. Most can be treated. After my first chemo, my mouth was on fire. Couldn't eat, had trouble drinking. Put up with that for a few days before calling. The solution was "Magic Mouthwash," an easy topical swish/gargle. Good MOs will try to make the treatment as easy as possible. Some people have very mild side effects, others much harsher. People are generally more inclined to tell you the story of their friend's uncle's ex-wife who developed a second head and painful third arm during treatment, than they are to talk about someone with mild side effects. Kind of like hearing all the horror stories when you're pregnant.

Chemo nurses generally are angels. Once you're in their hands, your nerves will settle more than likely.

Good luck, may God bless you. Hang tough!

__asher__

I'm fairly newly diagnosed, too, gsd5. It feels like this whole two weeks has been CRAZY! I hope that your nerves have settled some.

Hawkeyeheath

I'm new here too. I'm 44 with 3 kids at home -- 13, 10 and 8. I was diagnosed January 14th with idc. At the time they thought the tumor was 1 cm so scheduled a lumpectomy to be followed by radiation. The day of surgery, a 2nd small spot was found and in the pathology report it states that the tissue between the 2 was also cancerous. So, I ended up with a quadrantectomy (25% of my breast removed). Final pathology lists the tumor as 3.1 cm so I am stage 2 instead of the 1 I was expecting. No lymph node involvement and clean margins of 1 cm around. At my surgical follow up last week, BS assumed chemo would now be added to my treatment. Met with MO and she wanted onco DX results before making a decision - doesn't necessarily think size alone warrants chemo. So, I wait for results again. While I would love to skip chemo, I worry about missing possible cancer that got into the bloodstream. I try to stay positive, but sometimes this feels like a death sentence- if not now, eventually. Glad to meet you all. Heathe

jdot

Hawkeyeheath, I also thought I had a 1 cm tumor until the post-op pathology determined it to be 3.5 cm. Margins and lymph nodes were clear. My RO immediately wanted chemo, but my BS and MO said let's wait for the Oncotype DX score. After a very nervous two weeks, my score came at 12 so chemo was not recommended by my MO. As much as I wanted to stay positive during that waiting time, it was very hard. I wish you luck with your score.

Moderators

Hawkeyeheath and dot, welcome to Breastcancer.org! Hope you find the information and support you're seeking here... wishing you the best!!!

The Mods

Hawkeyeheath

wow, Jdot! We are practically twins- right down to the DX date! I got my oncotype score yesterday. It is 6! I see my mo on Wednesday. I am expecting her to recommend radiation only. How is your radiation going? How many treatments do they say you will need

jdot

Oh my goodness! A 6! Hawkeyeheath, I'm so happy for you. I was hoping for a score as low as a 5 or 6, but I'll take my 12 since it means chemo is off the table. I start the prep work for radiation next week, and then my daily treatment will start around March 7 or 8. My RO put me on the "Canadian Plan," which is a 4-week course, 5 days a week. I'm glad for the shorter timeframe since the drive is an hour and 15 minutes each way. I'm a little older than you, 49, with no kids. I have a great support system with wonderful friends and an amazing husband. Now that chemo is off the table I am elated, and I feel good about my treatment plan. Although it's a long drive each day for radiation, I will not complain. Afterward, I'll most likely be put on Arimidex for 5 years and I'm hopeful I'll tolerate it well.

Hawkeyeheath

Jdot-- that is a long drive everyday! I'm sure it feels good to have a plan. Hopefully, I will have mine on Wednesday

jdot

Hawkeyeheath... I wish you luck with your appointment on Wednesday. My RO introduced the fear of "cancer cells running through my bloodstream," but in every fiber of my being I did not believe chemo was right for me. No one wants chemo, but if there's a strong reason for it, I can accept the risk/benefit ratio. Even though my doctor tried to scare me with statistics, I had to trust my intuition. And fortunately my test score proved my intuition was correct. Hope you're healing well from surgery, and again, good luck on Wednesday.