Double mastectomy- tumor results questions? What does 220 mean?

vikkis_brother789

Hey everyone.  I'm asking these questions for my personal knowledge concerning my sister.

On Jan, 16, she had a double mastectomy.  A single cancerous tumor in one breast, but she had both removed.  Also removed a single lymph node near the tumor (armpit area).

Tumor was 18 mm.  1.8 cm.

1 week after the double mastectomy, the oncologist told us (me and sister) that just by removing the breasts, her survival rate was 85%.  They were going to send the tumor to be tested and depending on 'how angry' the tumor was , would determined whether or not she would need some chemo, followed by the estrogen killing pill.
If chemo was recommended her survival rate would be 95%, in addition to the pill.  Also, the er,her positive/negative factors were satisfactory.  I forget which one is positive=bad, and negative= good, or whatever. I apologize....but the factors were encouraging.

Fast forward to today, after getting the test results, the doctor (over the phone) told her that she was at '220' but would have liked to have seen '80'.  Can anyone tell me what those numbers represent?

He also told her that she was at 20%...I'm assuming she is at 20% cured instead of the original statement of telling us she was 85% cured just be removing the breasts alone.

I'm getting this info from my sister who is upset.  I've tried researching this 220 vs 80 number and can't find anything. 

Chemo starts in 2 wks.  4 treatments, 3 wks apart, 4 hr sessions.  Then the estrogen suppressing/killing pill.

Thank you.

sbelizabeth

Hello, Vikki's Brother.  Bless you, for being a caring and concerned brother.  My own brother stood by me throughout my BC fandango and I relied on his support and love.

As much as I want to help you with answers, the numbers you pass along here have me stumped, and I wouldn't want to stab around guessing what they mean.

My BEST advice...and in my humble opinion, this is very, very important...is to have your sister make an appointment with her oncologist, make a written list of her questions, and sit down with the doctor to get her questions answered.  Go with her, if she's comfortable with that.  Her breast cancer and it's treatment should NOT be a mystery to her. 

The team of physicians treating your sister, which includes at least a surgeon and a medical oncologist, and perhaps a radiation oncologist, nurse navigator, psychologist, lymphedema therapist...the list goes on...should be a team.  A team that includes you and your sister.

Blessings to you and Vikki as you walk this path together.  One day at a time, you'll get through it.

grammakathy

please encourage your sister to get her pathology report (from the analysis of the tumor) and surgery report in writing - also a copy of the oncotype dx test (if it was done). Having these reports to read at home will help her understand what is what. We are bombarded with so many terms and facts that are outside our comfort level that something you hear now might be recalled differently later. Having the reports to refer to will help as her understanding increases. Try to take it step by step - appointment by appointment. And encourage her to have someone go to doctor appointments with her to take notes. Hugs to both of you. She is blessed to have you by her side

vikkis_brother789

Thank you.  I took her to her pre-op appointments...I took her to the hospital for her surgery...Spent the night with her at the hospital and brought her to my home for the week following.  I was emptying her drainage bulbs too and keeping a log of the amount, times, etc..!

But since my mother has been back from annual month long trip, she has been taking my sister to her appointments and what not.  So today, I was getting information from my mother who got the info from my sister who got the info from the oncologist...over the telephone.

Chemo starts on March 5.

On a side not, my father was diagnosed with terminal brain cancer on Dec. 9, following a seizure that he suffered the day before.  He left the hospital with Hospice already in place.

The week of my sisters double mastectomy, my father took a very fast downward spiral.  I had to scramble to get him accepted into a nursing home with a medicare 'pending' case, 1 day before my sisters double mastectomy.

For the past 2 months, I've been taking care of 2 cancer patients in my immediate family.  It's been tough.

Moderators

Try and get more written results, as over the phone results can be distorted by the brain going into shock and not thinking or remembering well. We could only guess, and that is too risky. The advice re going with your sister as another pair of ears and someone to write things down is very valid.

Your sister is very lucky to have you supporting her at such a traumatic time, and we thank you for that but you need more accurate info from her doctor to get more relevant feedback.

Keep supporting and we wish your sister the best.

Didn't see your post till after this was initially posted. Your family is certainly going through a very stressful time and we sympathize. Your Da's situation would have been very tough on you all. Our best to you Mother who is supporting your sister, as you are. Our best to your whole family.

The Mods

Hopeful82014

Vikki's brother - I am so very sorry for all that your family is dealing with right now. What a series of blows you've had piled on.

The one thing I will add is that yes, you need to get the pathology report and others in black and white. The hospital will give them to your sister if her MDs do not. Try as well to record her office visits so she can listen to the info again later and share with you and your mom if she chooses. Most MDs are fine with this if you give them a heads up ahead of time. You can do this on most smart phones or with an inexpensive little recorder. I have found this to be a HUGE help.

I wish all of you the best. Take care of yourself as well as everyone else.

vikkis_brother789

Thanks to everybody for the replies and thoughts.

Just talked to sis, she said and I quote, " The doctor (oncologist) said I was in the 20's and he would have like to have seen me in the 80's.  He wants to start chemo right away."

I'm thinking those numbers represent her 'cured' percentage if she didn't have chemo.  The tumor/lab results must have came back more 'angry' (as used by the oncologist and my online research) than previously hoped for.  Something tells me that it is more aggressive than what was lst predicted and/or hoped for. I could be wrong as far as what those numbers represent.

I do remember the oncologist telling us when we went for her 1 week post-op appointment, that just by removing the breasts, she was at 85% cured...chemo + pill would put her at 95% cured.  Those were his exact words.  He also told us that there was a 60% chance that the tumor would be a Grade/Level 1 and no chemo would be needed or highly encouraged.

So, that '20' number that is stuck in my sisters' head seems to be the most upsetting to her and is the stat that is dictating the next step(s) in treatment.

There seems to be a sense of urgency on part of the oncologist.

 

farmerlucy

The doctor may have sent her pathology off for the oncotypedx test. This test looks at the biology of the tumor and determines whether or non chemo is warranted.

http://www.genomichealth.com/en-US#.VOc6qfnF-l4. The twenties may be the result of the oncotype test - a score in the twenties is a moderate risk for recurrence - anything over 18 is considered moderate risk and docs start recommending chemo.

I honestly doubt that the 20's representing anything having to do with survival prediction in the 20s. Even at stages beyond your sisters the survival prognosis in much great than 20%.

Sorry for all the heartache in your family. Take care of yourself. Your family is lucky to have you.

vikkis_brother789

Farmerlucy-  After reading your reply and talking to my sister again, I believe your assessment of the '20' is spot on.

She's not sure where she got the '80' number from as far as the doc telling her he would have liked to seen her in the '80's.'  She admits that when the doc said chemo, she started to get upset and wasn't quite comprehending what she was being told over the phone.

I believe the doc was telling her that after chemo + pill, she would be in the 80+ percentile for non-recurrence.  Is that a fair assessment?

She has  put a call in to her breast cancer nurse/advocate to get more answers to her questions since she has calmed down from yesterday.

Thank you.

farmerlucy

I think that is probably a fair assessment. As all the other ladies mentioned be sure she asks for a copy of all the reports - the one for the oncotypedx from genomic health is quite thorough and very interesting.

ksusan

It's perfectly fine for her to call her medical team and ask to hear the information again. Remember, they're used to this--she's not. They know people's concentration is bad. She may be able to designate you as someone who can receive her protected health information so you can have these conversations directly if that would help her.

vikkis_brother789

So, I spent the day with my father at the nursing home.  My sister didn't call me back to let me know what her breast cancer nurse/support/social worker had to say.

In the meantime, I called the oncologists' office and asked to speak with the doctor or nurse, or somebody that could tell me what exactly the situation is.  Btw, when I took my sister to the hospital for her surgery, she and I had signed consent forms that allowed her medical information to be disclosed to me..  The lady verified who I was, but unfortunately, the doctor has been on vacation all week.  The lady sent him a message and said I could expect a call back on Monday.  The doctor actually called my sister while on vacation to tell her the results and that she needed or he recommended chemo.  That in itself puts a sense of urgency on it, to me anyway.

Keep in mind, this oncologist is also my terminal fathers' doctor and we have met on several occasions.

When I went to his office 2 days in a row, with 2 different patients, it was a de je vu moment for the doctor. lol.

Hoping to know more on Monday.