TNBC - Chemo? - Hair Loss? - PET Scan?

LiLi1964

Ladies,

I hope someone can help me out – you all sound so wonderful and informative and think this discussion board is a great outlet/inlet for all us in this fight. 

I had my TNBC verified by pathology following my bilateral mastectomy on 8/7/13.  Prior to surgery, my surgeon did inform me the initial pathology was showing TNBC and that meant the “after surgery” drugs normally used would not be used, and radiation wouldn’t really be an option since all the breast tissue was being removed – that would leave chemo as the only option available to me. 

OK – post surgical follow up and review of bilateral mastectomy and sentinel node biopsy (both sides) showed IDC much more extensive than originally suspected and the right sentinel node tested positive for isolated cancer.  My surgeon said he did speak with Oncology and said chemo was “likely and would probably be over a 4 month period”.  Met with his office staff and got my Oncology appt on 9/16/13.

All that said…he said “likely” – is chemo ALWAYS used?  I’ve read online that not all chemo causes hair loss – how am I to know if the chemo they use on me will cause hair loss?  My family doctor said they might do a PET Scan – is that always done when a sentinal node comes back positive?  Surgeon said “nobody can tell if the cancer has spread elsewhere” – wouldn’t that mean I SHOULD have a PET scan?  If you know you will have hair loss – do you get a short hairstyle right away to help with transition (but here is where I’m frustrated because I don’t KNOW if I am getting chemo or if those drugs DO cause hair loss)?  I’d like to get back to wearing my natural hair as soon as possible following chemo (if in fact I have chemo and hair loss-I don’t know that as I sit here today) which means I’d likely have an easier transition if I got a short hairstyle right now, purchased a wig that is in a short hairstyle, then being able to wear my hair naturally after chemo sooner than if I started out with my shoulder length hair.  But what if I get a short haircut, then go to Oncology and find out they will not be doing chemo??????  I really do not like short hair on me (seems so stupid to be worried about my hair when I’m sitting here fighting cancer!)  but want the transition to be as smooth as possible.  I don’t want to get a short hair cut before returning to work now and then find out I didn’t need to do that if they decide no chemo so hoping some of you out there can help me out.

Gosh, I just re-read all that and do I sound conflicted and confused!  Hope to see some responses soon.

Melrosemelrose

Before you do anything else.... take some deep calming breaths.  Although I'm not a TNBC, here is what I do know.

You may want to have a consult with an oncologist to see what is the next step in your treatment plan.  I met with my oncologist a week after I had my lumpectomy and had my preliminary diagnosis.  She along with the Tumor Board at the hospital where I had my UMX surgery and my chemo  have formulate my treatment plan.  The reason you want to meet with a breast cancer oncologist is because it is that doctor's specialty and it will allow you to ask the kind of questions that you are asking here.  Do not feel like you are stepping on the toes of the surgeon because the surgeon may not know the specifics of the rest of your treatment.  I just reread your post and glad to see that you do have an oncologist appointment lined up.

As for the PET scan, PET scans are done to see if there are other cancer cells that may be located in the other parts of the body.  The dye that is injected for the PET scan contains glucose.  If there are other sites of cancer in the body, the scan will "light up" because the cancer cells like glucose.  With that being said, there are microscopic cancer cells circulating through the body which may not be picked up with the scan.   Some oncologists have their patients have a PET/CT scan before the commencement of the chemo.  It serves as a baseline so that the oncologist has a foundation to work with.  I had a PET/CT scan prior to the commencement of my chemo.  Was I scared about having it.... yes but I also wanted to know if what was happening in the rest of my body beyond my breast area.  The way to look at the testing/ scans is that you and your medical team are on a fact finding phase.  You and your medical team want to have as much  factual information about your body that one can have in determining the best treatment plan for you. 

As for the chemo, the loss of hair is the one of the side effects of chemo.  Here is my hair story--- I had waist length straight hair at the time of diagnosis in Feb. 2012.  At the time of UMX in March 2012, I had a short bob.  In May 2012, almost 3 weeks after my first round of chemo, I gave myself a short boy hair cut.  After that, I have not cut my hair.  It has grown back wavy and is still short.  The reason I did not shave/buzz my head after it started falling out is because I wanted to see what my hair would do.  It has been my personal science experiment and continues to be just that today.  I know the mere thought of losing one's hair can be devastating.  My moment of truth came in the shower when I had a handful of hair in my hand.  I knew at that very instant that I had a choice to either fall apart or just look at the hair, clean out the shower drain and move forward.  I chose to do the later.  If you are worried about hair loss, you may want to try the cold caps.  There is a discussion thread that those who have gone the cold cap route.

One comment that you will read many times here is that it is one day at a time, one step at time.  Hopefully, you will learn what this truly means to help you lessen the feelings of being confused and overwhelmed.

I know several TNBC women here-- they all had chemo and those with lumpectomies had radiation therapy also.  Their oncologists told them that they needed to do everything possible treatmentwise.  You see, being TNBC means other treatments such as hormonal therapy and Herceptin are not a part of the standard treatment protocal for TNBC patients.  I can tell you that each of my TNBC friends all wish that there was more they could take or do to help prevent a recurrence.

Again, take some deep calming breaths.  There are many here to help you and will travel with you through each phase of your treatment.  Wishing you the best...... 

LiLi1964

Thank you for your support and information!  However, I think perhaps I was not clear in my original post.  My worries and concerns have more to do with what feels like lack of information from my surgeon (who is no longer providing care for cancer as it has been handed over to Oncology). 

You see, prior to surgery I did quite a bit of research online.  I knew what Triple Negative Breast Cancer was exactly before he told me (I reviewed the original pathology from stereotactic biopsy); I knew that chemo was the only therapy that would be used if any therapy was needed post surgery; I read that if any cancer was shown in either Sentinal Lymph Node that that could mean it could also be in any part of my body.  My biggest worry and concern were the weeks between hearing “you have cancer in both breasts” and the actual surgery to remove the breasts. 

I have felt that several doctors I’ve seen thus far for cancer seem to prefer their patients NOT do research on their condition (how insane is that!).  I did some research to see what I would need at home post surgery to get me thru recovery and was told “everything will be taken care of for you”.  They provided me with a surgical bra in the hospital – and this bra was probably a DD cup.  Now tell me, why put me in a surgical bra WITH CUPS?  They just removed both breasts!  No pockets for the 4 drains but they did finally get an elastic belt to slip my 4 drains on.  I want to get back to work asap but have no temporary prosthesis nor a mastectomy bra to put them in.  I found out yesterday that most women are seen by the Care Wear center prior to surgery for a camisole which has temporary breast forms (but nobody sent me there even though I was asking about post surgical products I’d need) – and now I have to wait for an appt to see them so they can provide me with something to make me “more comfortable” in public which is holding up my return to work.  Grr! 

I want a PET scan.  As soon as pathology came back stating isolated cancer in the right Sentinal Lymph Node – that sealed the deal for me.  But surgeon didn’t say that Oncology would do it so I wanted to see what other women on these discussion boards either knew or went thru.  I’ve no anxiety over the test – and I really am not overly concerned with chemo.  The few women I personally know who have gone thru chemo had very few problems because medicine has really come along with medications to help with all the side effects (mind you, I said “overly” concerned – I do worry, but nothing that keeps me up at night).  I wish there were more therapies available to me to help kill whatever cancer may remain in my body and to give me better chances against reoccurrence.  But being Triple Negative limits those options – if there were anything more available, I’d be right there with my hand up saying “yea, let’s do it” – I want this cancer gone and gone for good! 

Hair……see, here again my doctors are acting as though I shouldn’t worry.  I’m not worried.  If the drugs they use lead to hair loss, so be it.  My husband is ready to shave his head in support, I’ve found wigs I’m interested in, and I’ve found several websites for scarves and hats.  If I am going to lose my hair, I’ll do what ever other woman has done before me and deal with it.  But I want to plan for this – and again, this is where my frustration comes in.  The doctors aren’t very forthcoming in exactly what the next couple months hold for me.  I’m pretty darn sure chemo is there, and that means hair loss.  I’ve read a lot of posts of women taking charge and getting short haircuts beforehand – and I’m ready to do that BUT since I’m not absolutely certain I will have chemo….what if I get a short haircut that I don’t like and then am stuck with it (and did it because I assumed I’d have chemo).  Just seems the doctors should be giving me more definitive answers than what I’m getting – hence all the frustration.  

I finally decided as I’m writing this – I’m getting my hair cut short this Friday!  Everything I read continues telling me chemo is going to happen so…..if I don’t like the short hairstyle, it’ll be gone in a month or 2 anyway and I'll be bald!  If no chemo…..then that’s a blessing and what difference does it make if my hair is short for a while?

graceforme

Hi Lili1964,



I had a pet scan before chemo. My MO ordered a pet scan due to being tn & 2 positive nodes. Did you have a positive node & have you been staged yet?

Edited as I just noticed you had a positive node. I think that with a positive node that your MO will recommend chemo.

5thSib

If you have not found it already look for the "Calling all TNS" forum. Lots of wonderful ladies with lots of information.



Chemo is really the only effective treatment right now for TNBC so count on it. I was diagnosed in September. My chemo started in November right after Thanksgiving. I had a PET scan after surgery (lumpectomy). SN was positive for cancer but did not know that until a week after surgery. Then another week later found out about being TN. For chemo I had 4 rounds of A/C dense dose (every two weeks) then 12 weekly Taxol treatments. This is pretty standard for TN. I finished chemo in April. I started losing my hair between my first and second treatments. Hair started coming back in during Taxol treatments. I now have 3 inches of curly hair. I bought 2 wigs but only wore them a couple of times. I decided scarves and caps were more comfortable and more fun.



Waiting to know what is going to happen is hard. Once you have a plan it is easier to deal with this. The ladies in the forum I suggested will really help you out.

placid44

Lili,



So sorry about your situation. I'm TNBC. Here's what I've learned so far.



You can still do radiation after a bilateral mastectomy (BMX). I did chemo, BMX, and radiation. There is still a benefit to radiation after BMX because it can get rid of stray cells that may be left in the very small remaining amount of breast tissue, or skin, or mastectomy scar.



You don't necessarily need a PET scan with a positive node. You"ll want to know how many positive nodes you have. They find this out through a sentinel node biopsy, where they remove a few nodes, and, possibly an axillary dissection, where they remove more nodes. If several nodes are positive, then it is more likelymthatmthe cancer may have spread and they are more likely to do a pet scan. I have not had a pet scan.



For triple negative, one of the commonly used regimens is called ACT (adriamyacin, cytoxin, taxol). If so, you do lose your hair with that...usually about three weeks in. I got a wig and did fine with that for when I was "out" and an exercise skullcap covered with baseball cap when going to the doctor's.



It is common now for them to give chemo before surgery, especially with triple negative. It's called neoadjuvant chemotherapy. The idea is to get working right away on any stray cancer cells that might be circulating in your body. Taking care of the local tumor can wait..it is not ehat is most dangerous. It takes a while to get surgery organized and to recover from surgery, and in the meantime the cancer might be spreading. I was told to start chemo immediately.



Another benefit of neoadjuvant is they can feel and image the tumor during chemo to see whether it is shrinking. If it's not, they can change the regimen to something that might work better. Of course, it's very stressful to still have the thing in there and worry about whether it's shrinking. Sometimes the size doesn't change that much, but it turns out when they remove it, most of the tumor is dead cells that were killed by chemo. You don't really know until they take it out what is left. My original tumor was 3.1 cm and residual "real" tumor after chemo was 7 mm, with other mass that was scar tissue. So it shrunk about 77 percent.



You'll want to have the sentinel node biopsy before chemo starts so that you'll know how many nodes were positive, ie your true stage. If they do the node biopsy after chemo, e nodes may be negative because they were negative to start with OR because chemo got rid of cancer that was in them. You don't know.



I did not have a problem with nausea during chemo. As you said, the anti nausea drugs are good. But I had lots of other problems, and I was a healthy 44 year old. I don't say this to scare you...just that you're oncologist will manage problems that may come up, and you may not be able to work during chemo. I could only work a very few hours a week, and sometimes none. I had to do it from home because during chemo, you are susceptible to infection from coworkers and others.



I hope this helps a little. Feel free to private message me anytime. My blog (below) has more details about my experience.

placid44

I second 5thsib about the "Calling All TNS" forum. http://community.breastcancer.org/forum/72/topic/752075?page=738#idx_22130

Melrosemelrose

Lili- Now I have a better idea of where you are at with things and why you feel that the surgeon passed you off.  For me, I wanted the oncologist appointment and wanted to ask the oncologist what was going on and my treatment plan.  The surgeon does one part of the treatment ( the surgery) and may not have the expertise in chemotherapy, radiation and other drug therapies and may not want to venture in an area that is not his field of expertise.  That may be also true with some of the other doctors you have spoken with.  The truth of the matter is that some of these doctors may not know specifics about bc treatments and may not want to mislead you.  Rather than say that they don't know, they have tried to brush off your questions. 

As for the hair situation, when I went to see my oncologist for the first time, I did have the waist length hair.  As I told you I cut it into a short bob right before my UMX because I didn't want to deal with the long hair after surgery.  The short boy cut was my own doing because I got tired of the hair being everywhere... on me, on my pillow, on my clothes.  I made a bunch of little ponytails and snipped those off myself.  I felt liberated and in control since I made the decision to snip and didn't wait for it fall out over time.   I always had a thin veil of hair on my head which I loved touching.  I found it very comforting to feel what little hair I had left and to rub my head.  My husband and son kept seeing me rub my head that they started rubbing my head also.  I told them to rub it for good luck.... lol.  I like your spirit and attitude about your hair and learning to accept that it may be gone for a while.  You will experience the roller coaster of emotions of this journey.... some days you like what you see and other days, you may not.  Just have to remember that no matter what, it is all good.  Just have to put your head down and push through the tough parts. 

If you ever want to private message me, please feel free to do so.  Keep us posted on your progress.  Just remember that you are not alone and never will be.  HUGS!!!

LiLi1964

Wow, Placid44.  I just visited your blog and God bless you - your words warmed my heart and soul and I've saved it to my desktop so I have quick and easy access to it.  I've a feeling I'm going to be referring to it often in the coming months.

Thank You!!!!!

Melrosemelrose

I just wanted to thank all of you TNBC gals for posting here to help LiLi.  You have welcomed her to these boards and show the kind of support and help that she needs to get through to the other side of treatment.  You can give her a much better view about TNBC treatments than I can. 

dltnhm

Lil-

I'm so sorry that you have to be here, but thankful that you found BCO and thankful for all the ladies with TNBC that are here to respond to your questions regarding that diagnosis and treatment and give you encouragement.



I did not have that diagnosis so I cannot speak to that. What I would like to speak to is the timing of your appointment with the oncologist. I would urge you to make an appointment to see the oncologist now - and not wait until September 16th. There are a number of reasons to do so - the most important at this juncture is that you desire as much information upfront as possible and you want to be an integral part of the research and decision making process. I get this from your posts here.



Beyond that, your relationship with your oncologist is paramount to your wellness going forward. You will maintain that for many years - not months. You want to be able to trust your doctor, have faith in his/her recommendations, be an integral part of the decision making process, as well as 'click' when it comes to communication.



Although your experience, not seeing a medical oncologist until after surgery, is not uncommon, neither is meeting with an MO before surgery. That was my case. In the event that I would need radiation and/or chemotherapy, my breast surgeon wanted me to have an appointment and establish the relationship before dealing with everything else on top of that. So in the course of a few days I had appointments not only with her, but also an RO, MO, and reconstruction surgeon to get my potential team in place.



I know you cannot unwind time, but you should be able to meet with an oncologist earlier than is scheduled. Once I had my mastectomy and the final pathology was back, I met with my oncologist again to discuss the pathology and develop a plan to put in place. That occurred 2 weeks after my surgery. (Mind you, my breast surgeon had already gone over the pathology with me first as soon as it was back.) After that 2 week post-op appointment with my MO, there was a meeting with the Research Study coordinator to cover a study I might qualify for, additional scans, surgery for port placement 2 weeks prior to starting chemo (my choice - as I'm a runner and wanted to be able to run as soon as my reconstruction surgeon cleared me), etc. And I also met with my RO to discuss the pathology and course of recommended treatment to follow chemotherapy.



Again, I share all this with you because I believe it might assist you in finding the answers that you need, establishing your team, making decisions regarding your treatment, and preparing for that.



Blessings,

Diana

LiLi1964

Diana,

You are so spot on!  I actually tried your suggestion as soon as I received the cancer diagnosis. 

I tried to get my surgery scheduled sooner than the 2 weeks they gave me - no luck.  I tried to get my Oncology appt moved up while I was waiting for post surgical office visit (had my family doctor and Insurance Benefit Case Manager attempting to get it moved up) - no luck.  They were told the Oncology department is playing "catch up" because one of the major insurance carriers in this area had declined their subcribers to seeing UW physicians last year (which made all those patients find their specialty care elsewhere) but reversed that position several months back so the UW system is now flooded with those patients coming back into the system which makes getting an appt difficult. 

What my thoughts were when I got the news "you have cancer in both breasts" was - GET IT OUT OF ME NOW and where might it be spreading to.  I'm stuck with what I have and not too happy about it but doesn't seem like there is anymore I can do other than being put on a cancellation list (which I did right away) w/the Oncologist.  I would so much like to have been in your situation regarding getting your "team" put together and being allowed and encouraged to input your thoughts and concerns right from the start.  I can only hope that when I meet w/Oncology, that will be the case.  I'm going to the UW Carbone Cancer Center which is very well respected so I have hope things will gel a little better once there.  It's all this waiting and uncertainty (you'd think I'd be used to it by now...we all know what it's like waiting for appointments and test results, etc) that is so frustrating.

I have that constant thought replay in my head constantly...is the cancer spreading and how bad is it getting in other parts of my body?  It's a horrible thought so I try to keep my mind occupied on other things but let's face it, the worry is real and knowing I was diagnosed 7/23 and won't be seeing Oncology until nearly 2 months later makes that worry grow as each day passes.  So I try to focus on the general questions that all breast cancer patients must think or want to know....will I have chemo?; will I have hair loss?; will I get a PET scan?; do I cut my hair short now?; and on and on.  Keeps my mind busy enough that I can push that nasty thought of "is my cancer spreading more and more each day?" to the back burner and put my faith in God that all will work out as is His will.  And pray for the grace to face whatever my future holds; learn from the experience; and offer my encouragement and support to those who are now facing those initial weeks I faced prior to surgery. 

As for all the other responses I've received, I thank you all from the bottom of my heart.  I feel so much better having a forum to read how other women before me have dealt with their experiences and the encouragement and love and support means more to me than words can express.  I didn't realize how much I needed a support group of women in my shoes (or had been in my shoes) until I made my first post.  It feels so good to read others experiences, their trials and tribulations, their fears and their joys, and to know I have a place to turn where others UNDERSTAND what I'm going thru.  Family and friends mean well but no cancer has been in the family so nobody can really relate to what I'm going thru or the thoughts that swim around in my head.

So a HUGE thank you to all who have sent me responses!!!!!!!