First post--Mom diagnosed on Monday w/trip neg

AlishaCatherine

I am posting about my mom. She is 48 years old and after an ultrasond and biospy, her pathology report came back on Monday showing she is ER-, PR-, HER2 unequivacal (1.8), invasive ductal carcinoma, grade 3. I don't know how big the tumor is but the sample they took was 3cmx2cm so larger than that. 

She is getting an ultrasound tomorrow. Her doctor is suggesting a lumpectomy followed by rads and chemo. He has her tentatively scheduled for August 27 but says she can choose a masectomy too if she wants. I wasn't at the meeting but I think he might have sugar coated her diagnoses a bit. He said stage 1 but from reading online, it seems like it's farther than that. He said he has no reason to believe it's in the nodes. How could he know that at this point?

Thankfully she has a second opinion at Fox Chase Cancer Center in Philadelphia next Thursday. I am in the process of putting together a list of questions. One of them is asking if chemo first would be better. If TN has higher recurrance rates, why not also go for the full double masectomy (besides the obvious reason of losing your breasts)? I just want to make sure we are doing every single thing we can so she lives a long and happy life.

What other questions should we ask?

SewStrong

Hello, I just read your post. I have had surgery for TNBC and am awaiting chemo and radiation. I might be able to give you a few things my doctors told me. My surgeon said that the recurrence rate is the same for mastectomy or lumpectomy because if the cancer is doomed to return, it will return in the chest wall with a mastectomy or in the breast with the lumpectomy. I had a lumpectomy. My tumor was small but invasive, so I've been told it could have entered my bloodstream before I had it removed. The chemo is supposed to get the cells that might be lurking in the body and the radiation is supposed to kill those in the breast. I hope that helped a little.

AlishaCatherine

Thank you so much for your response. It was helpful. Did your doc give you the option of chemo first? I noticed on here that many TNBC go that route but her doc did not suggest it. Just curious if you had the option and why you decided on surgery first.

Luah

Some questions you may want to put to the doctors:

1. What exactly do we know from her biopsy results, U/S and clinical exam... with respect to size, potential for node involvement, grade etc.  (you mention 2 x 3 cm but that seems like a very large specimen for biopsy, could it have been 2x3 mm?) 

2. What other tests/scans would you recommend? (often abdominal U/S, breast MRI, chest, and bone scans are done to rule out any distant disease prior to surgery). 

2. What surgical option would you recommend? Why? What are the risks/benefits of that option?

3. What alternate surgical option might she consider and why?

4. What do you know about how TN BC behaves... incidences and patterns for recurrence  (for example, if TN recurs, it is more likely than other BCs to be distant recurrence, not in the breast)  

5. What are the risks and benefits of doing chemo before surgery? After surgery? 

6. Under what circumstances would you recommend radiation?

AlishaCatherine

Thank you for your response, Luah. I just looked at the pathology report again and it says the tumor size could not be accessed but the specimin was 3x2cm. I know that seems really large. I don't have access to the u/s report. 

She had a chest MRI on Saturday. They are going over the results at the meeting today but my dad called yesterday and the doc said "it showed no additional cancer than what I already knew was there." So I guess that's good.

I added these questions to the list! 

Anonymous

Excellent source of information about 3NBC: http://www.tnbcfoundation.org/

AlishaCatherine

So it turns out that they did take a large sample for the biopsy and the DCIS is 3 cm but the invasive part is only .89cm. He said they just use the size of the invasive cancer when they talk about stage. Doc is still recommending lumpectomy followed by chemo and rads. I think we should be more agressive but I am not a doctor. I am eager to hear what her second opinion says tomorrow. If they suggest chemo first, she is going to have to make a decision. I just want us to have a plan and start moving forward...

AlishaCatherine

Ok so second opinion was today and this new doc told her she could choose chemo or surgery first, but it didn't make a difference. He said chemo works really well for TNBC. Does anyone know the chance of getting no response? The one thing he said that was different from the first doc was that in his experience he does see lower rates of reccurance with a mastectomy. Though in her case he thought lumpectomy, chemo, rads would be fine. He would do a mastectomy if she prefered. The good news in all of this is that my mom really likes the first doctor and now she trusts that his reccomendation is good since the second doc didn't say anything that was very different. 

bluepearl

Triple negative is very aggressive and unpredictable, even with small size and nodes negative. Hit it with everything!

Luah

Sometimes chemo is not done for very small tumours, which your mother's may be classifed as. Even so, TN is aggressive and I know many women on these TN boards who did do chemo (TC often, not the AC-T combo) with tumours less than 1 cm. I think it comes down to your mother's age, risk factors, how her health and strength is, etc.   

AlishaCatherine

She is 48 and healthy. She is opting for lumpectomy on August 29 followed by chemo once she is healed. Then rads. She'll meet with 2 oncologists for their chemo treatment opinions.

ProfTNBC

Sorry not to post sooner, but this is my first day posting to this site.  I was in your mom's shoes back in March (2013).  My Onc recommended chemo before surgery, which I almost went with, but over the weekend changed my mind to go with surgery first.  My reasoning?  They suspected my tumor was a 3 cm size, invasive, grade 3, but not yet in the lymph nodes from anything they could detect without taking the nodes out.  It is an extremely fast growing tumor - probably grew to its size within about 5 months time.  I decided that it was better to take the tumor out before it spread to the lymph nodes than to find out whether I might be a responder to chemo.  From what I understand about responders - about 1/3 of the women are complete responders to chemotheraphy, and for them, there is a very high recovery rate (98% or so), meaning that they will live a normal life after treatment.  About 10% do not respond at all.  The field doesn't yet know how to help that 10%.  of the remaining partial responders, about 1/3 are just like the complete responders, and the others have recurrence (that may be treated with success, but the situations vary).  If I took chemo before surgery, I could find out whether my tumor responded to the chemo therapy and would know if I was a complete responder.  However, what if I wasn't?  What if I was in the 10% that don't respond at all?  (I'm not an expert, please keep in mind - this is just my understanding from reading research and from what I believe I was told.)  

I chose surgery because it would get the tumor out, and if it had not yet spread to my lymph nodes, I would feel that I'd made a good choice.  I won't know if I am responding to the 6 months of chemotherapy and two months of radiation - however, I would do that anyway, so I don't have to know.  And prior to surgery I had every scan imaginable.  We couldn't see any metatheses.  It doesn't mean that a cancer cell didn't make its way somewhere and was lurking waiting for its opportunity to grow - it just mean that nothing was threatening me that we knew of prior to surgery, and that I would take the chemo and radiation to address any possible spread through my blood stream or otherwise that was not yet detectable, and I would live each day with the expectation that everything will be okay.  I'll wait the five years and see what happens.

As it turned out, the cancer did not spread to my lymph nodes.  I was happy with my decision to do the surgery first.  I have completed my AC dose-dense treatment over 8 weeks, and now am in week 8 of 12 weekly doses of Taxol.  I will have a month off soon before starting 7 to 8 weeks of daily (M-F) radiation treatments.  I am bald, with eyebrows thinning dramatically, and few eyelashes left, with blackened nail beds, neuropathy in my toes and fingers, mouth sores, muscle aches, and increasing fatigue, but, I am in good spirits, am working, am still here with my family, and am enjoying life.  This time will pass.  I keep a list of the positives - among them, not having to shave my legs anymore. ;-)  Showers are shorter because I don't have to blow-dry my hair, but just pop on a wig.  My hair looks better because it's ready to go every day and a rich, beautiful color.  (I generally use a synthetic wig even though I have one made of real hair.)

I am very sorry that your mom is going through this. She is lucky to have you there with her.  Good luck to you and your mom.

AlishaCatherine

Prof, thank you so much for your response. I am sorry you have to go through this. It sounds like only 4 more weeks of chemo before a much deserved break. I heard rads aren't too bad so I hope you start feeling better permenantly soon. I am putting all my energy towards my mom having clear nodes. So far from the u/s and MRI the doc thinks the nodes are ok but he is still going to take the sentinel node, not sure about axillary. It seems like with neoadjuvant chemo it's high risk/high reward. If you are the 10% without a response, well that sucks big time, especially since you (and my mom) are grade 3. Who knows what could happen in the time wasted with chemo. If you acheive cPR that is awesome and a big big positive. I really really wish there was a way to know if chemo after is working.

My mom did not have a bone scan or an MRI anywhere besides her chest. I wonder if she should inquire about those or additional imagining? The doc said he didn't want to put her through things that were unneccessary and I think that's why he didn't order them. But if they could be lifechanging....

Alisha

TifJ

I had a CT scan from neck to pelvis to check for any cancer elsewhere. This was not done until after surgery and just before chemo. My doctor wanted me to have a PET scan, but my insurance refused. I hope all goes well.

AlishaCatherine

Is dose dense A/C standard? Did your oncologist mention why AC before Taxol? How long did you have to wait after surgery to start chemo?

TifJ

I did not do ACT. I did TC (Taxotere and Cytoxan) both are common chemo regimes for Stage 1 TN. I started chemo 5 weeks after my mastectomy. She might not have wait as long after lumpectomy. Just another question for the oncologist!

AlishaCatherine

Surgery was today. Lumpectomy and sentinal node biopsy. Doc said he has a 15% rate of having to go back in which he said was good compared to the overall rate. I have no idea if this is true. He said there was no visible evidence of node involvment but we won't really know until pathology comes back on Wedesday. He took something a little smaller than a half dollar. Just holding my breath until patholody and hoping for clear margins and no node involvement. Then we can move on to chemo.

TifJ

I'll be thinking good thoughts that margins and nodes are clear!

Rose12

I also had a mixed tumor. 45% DCiS and IDC 55%. I was not triple negative but close. ER+ PR- HER- no nodes. Grade 3.  I had the tumor tested with the Onotype testing(I think that is how you spell it). I came back with a very high score. Did Chemo, 4X, radiation and now on Femara. I agree with blue pearl. Give it all you got because you can not go back. I pray all will work out. 

Thanks,

AlishaCatherine

**UPDATE**

My mom had a lumpectomy on August 29. She found out last Wednesday they got clear margins and there is no node involvement!!! This was such a huge relief. 

She starts chemo on September 25 and is doing A/Cx4 and then Taxol x4. She is getting a shot for white blood cells. I need to check out the chemo boards to see if this is a normal regimin for TNBC. 

encyclias

That's wonderful news about your mom, Alisha!

Carol

TifJ

The shot is probably Neulasta it is given the day after each chemo to help keep the white cells from completely tanking! When the white cells are extremely low it can invite infection in. Always watch for a fever of 100 or higher- it can signal low white counts. This is very normal for anyone receiving chemo.

So glad to hear you Mom got clean margins and no nodes!!

Fayed3

I am new to this discussion group.  My mother was diagnosed with breast cancer on August 20 and had a mastectomy the next day.  She is over 80 years old, so she's lived a good, long life.  But I would still like to have her around longer.  We are trying to figure out treatment options, and this discussion group may be helpful to me.  With it being TN and node involvement, and the abdominal scan showing two masses (PET scan to be done), it doesn't look too  hopeful.  Does anyone else have a similar case, with chemo and radiation providing some extension of life?  Or should my elderly mother refuse treatment?  If PET scan shows positive for cancer, it will change to a Stage IV.