Mastectomy before PET/CT?

Dad5309

Last week I was posting on the "worried.." board and now already we are in the IDC board.  BC can be a fast moving train obviously.  I really appreciate the support here and will try to ask specific questions and save the venting for later.  Based on the pathology report and exam, our breast surgeon thinks my wife is stage II, maybe stage III with 3 tumors and at least 5 lymph nodes.  He says must do mastectomy since it is "multicentric carcinoma".  Did not recommend a BM but left it up to us (he ordered a MRI on the other side to maybe help us decide but also was worried that if the MRI picks up something it would delay surgery on the cancerous breast.)  My main issue is how can we make an iformed decision without a PET/CT or something to see if it has spread outside the breast?  That seems important to me.  If it has not spread outside (not detectable anyway) that would make me more positive going into surgery.  And god forbid if it has spread and is bad (haven't got any good news yet) maybe that would impact my wifes decision.  She is worried that is has spread past the breast and I can't see her going through surgery then getting more bad news at a PET/CT scan.  Of course the surgeon wants her decision on BM soon but I think more info is needed.  Thanks for any info.

bettysgirl

first of all HUGS to you both. THEN take a deep breath.  All of us know that huge fear of what if...they did give me a bi-lat MRI prior to surgery to see what we were dealing with. I encourage you to have that done. He also ordered a CT prior to surgery. I asked for the PET and had to fight the insurance co to get it as it is sooo expensive.

Please realize that while it is HARD...waiting for the surgery until you have firm knowledge will not effect her long term outcome. It took time for this to grow and waiting a few weeks will not bring dire consequences. I know the fears running thorugh your head, know the feeling of just wanting it out...I have a dear friend who is a DR that had BC in the early 90's. She was a great help to me and her first words were don't panic...you have time to make the decisions.

As far as the BM- my surgeon would only consider it if i gave him a good reason for taking off a "healthy" breast. I had lots of fibrocystic tissue there, and had a recall years prior that the radiologist said was "just an enlarged milk duct" well this was ductal cancer soooo yes i would never have been satisfied with taking just one. The left did only show fibrocystic tisue and no tumors but i am glad that i did the bi-lat. It is a highly personal decision.

The nodes did their job. They caught the cancer. While our minds run crazy in the beginning with all the unknowns, a positive node does not mean mets will follow. The doctor i was telling you about had 26 positive nodes and she is alive and kicking all these years later...while you are both down you are not out and you will feel better once you have a plan in place. I PROMISE that for me the begining and all the unknows was the worst part! Once you have a plan you have something to be proactive about. The beginning phase was passive...i had to wait for results, wait for information and while all the internet was at my fingers there was a time when i had to step back from it all beacause your mind plays dirty games with you. Keep coming here and talk to others who have been there. We all know where you are coming from and all know your frustrations.

Take care and we wish you the best of luck in all your future decsions.

Lisa/ BGirl

Dad5309

Thanks very much.  Right now it seems that it is the Surgeon that wants to do surgery now (although I am checking with the RN - maybe they want to schedule it now but plan to have the PET/CT before getting to the surgery.  Otherwise it does not make sense to me to do surgery without a PET/CT if they think it could have spread.  Brad

nelia48

I'm a little confused about your post (and a lot of others' posts, for that matter) as it seems that you have not yet had a consult with an oncologist????  I find that strange, as that was the first place I went.  It was the oncologist that was kind of like the "head guy" or "in charge of stuff" guy for me.  It was the oncologist was ordered the CT scan, the chest x-ray, the bone scan, etc., and it was him that set out the course of treatment for me.  The surgeon was only there for the mastectomy when it was time for that.  The surgeon had nothing to do with my diagnosis and course of treatment (except for the biopsy, which the surgeon did do). 

I'm wondering, has your wife seen an oncologist?

sschmidt

My BS made many decisions before I saw an oncologist.  It may be because it was at Stanford and I was in line for a trial until they found it in 2 nodes.  My BS ordered Pet/CT, extra Mammograms, and the magnetic imaging of both breasts.  It was only after all surgery that I saw an oncologist.  At that point staging was done.  Was this normal?  I do not know but...it was fine with me as my surgeon was amazing.

The oncologist I saw then reordered tests and messed it up.  Not at Stanford. 

Dad5309

She has not seen an oncologist.  We are in a "breast clinic" at a major military teaching hospital.  The Breast Surgeon was recommended by our radiologist as what I thought was the "lead physician" but after yesterday I'm not sure that is how it works here.  We are pretty sure he wants to do a mastectomy then send us to oncology.  I have a message into the nurse about getting PET/CT before surgery - seems crazy to me not to plan to do that but his opinion was the cancer is bad enough in the breast and lymphs that it will need to come off regardless of other info provided by a PET/CT.

By the way, I don't often see people mention what hospital they were treated in.  Are people here going out of there way not to say where they were treated or is it not important to most?  Just curious.

 Brad

nelia48

Brad, I'm being treated at the Florida Cancer Institute here in Florida.  I chose that facility because my sister was treated there, and it is close to home.  Travel was a big consideration for me, and this was close to home.  The hospital is just across the street, and that's where I had my mastectomy.  I just couldn't get into all the choices, all the hospitals, etc., etc.  I would have gone crazy trying to figure all that out.

My tumor was very large, and I had to have chemo to shrink the tumor before I could have surgery. So I was under the care of my oncologist before I went back to the surgeon.  I saw the surgeon early on as he did the biopsy and put the port for chemo in place. 

I do find it strange.  I never think of a surgeon as the person who makes all the decisions concerning the cancer care.  I think of him as the guy who gets the order from the oncologist as to whether to do a lumpectomy, a mastectomy, etc., etc.  I don't know here. 

hrf

I saw both the surgeon and the oncologist before surgery. They wanted the "staging" done before surgery so while I had already had mammogram, u/s, and mri, I also had chest x-ray, bone scan and CT scan. If it had already spread beyond breast & nodes, I may not have had bilateral mastectomy as the treatment plan would have changed no doubt. Knowing that everything else was clear left me with the decision of lumpectomy or mastectomy. Neither one made difference to long term outcome of this dx. But I am BRCA2+, this was my second dx, and I don't want a third so the mx will take care of that I hope.

bettysgirl

brad -i guess we just don't mention where we were treated because all of us are from different places and states. I had my surgery at University hospital in augusta, ga. and while i know some see the onco first my BS ordered the CT and MRI to make sure of the size and location of both the tumor and the cyst, because i had told him i wanted them BOTH gone. Ended up the tumor was larger than originally thought and that combined with the large cyst gave us no option but a mastectomy. Actually my onco was thrilled that i had done all the tests before getting to him. Of course one of the things that they do at University is gather all the doctors together, (surgeons, plastic surgeons and onco's) for a group presentation of the case they present the case, with the films and together they come to a consensus as to what is best for that case. I was very well taken care of and loved every doctor they sent me to. They also have a breast center at University and the first thing they do is bring over one of the RN's from the breast clinic to the doctors office and they bring you a tote bag with lot of information, she takes you back to the breast clinic and answers lots of questions and gave us both books to read. The one she gave me had tons of info about the tests, the path results and how to understand them, lots of stuff, then they show you the boutique that has wigs, prosthesis, and clothing that is available as well as information about support groups. I could not have asked for better care.

Indomitable1

Insist on getting a referral to an oncologist to discuss all the issues (genetic testing, staging, grade, etc). In addition, is your wife interested in immediate reconstruction? A plastic surgery referral to discuss the options is also a good idea. I had to meet all (oncologist, radiation oncologist, plastic surgeon) to form and approve the team. They should be working together and communicate often and well.

Some women get neo-adjuvant chemo which aids in shrinking the tumor and hopefully get pCR (complete pathologic response) prior to mastectomy.

 Good luck! Continue to advocate!

amlg1

Brad you have PM.

lisalisa

I am being treated at UCLA.  I had a lumpectomy first as we didn't think my cancer had spread to my lymph nodes.  We didn't get clean margins.

So, after that, we knew I'd need either another lumpectomy or a mastectomy.  We did the PET & CT then.  Then, I chose to do a bilateral mastectomy.  The surgeon thought I was being too drastic, but I'm still glad that I chose it!

I had a few hot spots on my scans. One on my ovaries.  We then did a pelvic u/s.  There was nothing there.  The dr's say it may have been a cyst or something.  I don't want those scares again!  I'm scheduling to have my ovaries removed as soon as I'm done with radiation!

Best of luck!

Lisa

jacee

My initial decisions have been made by my BS. She started with Mammatome Biopsy, MRI of both breasts, another ultrasound, genetic counseling, then lumpectomy and counseling with radiation onco. Then when lump. came back with unclear margins and 2 of 2 sentinel nodes postive, we decided on unilateral mast. I have an appt with oncologist Wed for chemo.

To me, the most important thing was to remove the cancer at the original site as quickly as possible. I was told the oncol. would order a pet/ct scan later. I don't think I would have done anything different if something showed up on a scan...would still want the breast cancer out.

Have tremendous confidence in my BS and her decisions so far. I'm being treated at Mercy Breast Center and Hospital in Rogers, AR.

Best wishes...you have to do what's best for your situation. And must fight for what you want.

lemont

(in central Ohio) I worked with the surgeon until the surgery phase was over, then the oncologist took over for adjuvant treatment. After that, it was my choice whether to do follow-up with the oncologist or the surgeon or both. (It's different if you have neo-adjuvant treatment.)

I don't think the results of CT/PET would change the initial breast surgery. Also, the imaging techniques don't take the place of getting the tumors and lymph nodes under a microscope. You'll get a lot of info from the pathology report that will shape the options going forward.

I know it's hard to prepare yourself when you don't know what you're up against, but I'm afraid it may be that way for a while. I ended up with four breast surgeries and I was early-stage.  Unfortunately, it's more of a marathon than a sprint.

I wish you and your wife the best. Keep us posted.

Cinda

Dad5309

Well today we suddenly found out that a breast MRI had been ordered for today and we had an 1100 slot.  So we went off quickly to the hospital.  A consult has been put in for an oncology doctor but since the hospital oncology is full we will probably be assigned another provider in town.  We don't mind except that the effort is on us to get to an oncologist.  Also they don't want to do PET/CT prior to surgery since I have had 2 Drs. say it will not change the surgery as they know it is a bad cancer and mastectomy on left is a must.  Our big issue now is should she do a BM but maybe the MRI from today will help with that decision.  Seems we will still go for a second opinion at Sloan Kettering next week although what are they going to say besides you need a MX and chemo after?  Maybe then can help with the BM decision.  Still a fast developing situation.  Any words of wisdom are always appreciated.  And I need to ask the nurse if the HER2 test came back yet.    

Dad5309

Today (June12) we got a date for surgery.  Not till July 13.  3 days ago the surgeon said he would like to do the surgery by the end of June so this seems far off.  Anybody know the average time between diagnosis and MX?  Although we talked to the surgeon June 9, we knew the diagnosis the week before on June 3. 

nelia48

I know it seems like a long time ----- In fact, everything in this process always seems to be "hurry up and wait!"   It is the waiting that is just terrible, perhaps worse than any of it!

I knew I had a lump for years, but once I knew it was cancer, I wanted it out that day.  It was the worst thing for me to have to go through 6 chemo treatments 3 weeks apart before I could line up surgery. And then it was a month after that before the surgery actually happened for me.  So I know about the waiting. 

From what I've heard, it seems about right.  It also seems that things are falling into place with the onco consult, second opinions, etc.  I know it will seem that you are buzzing around from one end of the city to another, tests here, doctors there, pick up this, take it there, etc., etc.  The frenzy of it all, then the waiting. . . .!   It's just terrible.  I was so glad when I finally got into the treatment part of it, was on a schedule, and knew I was doing something about it! 

Let us know how it all goes.  You are certainly in my prayers!

Carolina59

I'm sorry your wife and you are going through this.

I was/am treated at NYU cancer institute. I went to see a breast surgeon there because I thought I had a blocked milk duct (nursing dd at the time) that was not resolving. I thought she would aspirate it and I would be out of there in an hour. Six hours--including mammograms, ultrasounds and a core needle biopsy--later, she told me that she was 99% positive it was cancer. This was on May 24, it was confirmed on May 31--high grade IDC imbedded in 10cm DCIS tumor.

My breast surgeon ordered all my tests--PET/CT scan, bilateral breast MRI, MRI-guided biopsy (which confirmed DCIS in the other breast as well)--before my bilateral mastectomy on June 26. I met with the oncologist only after all the surgical pathology reports were complete to plan adjuvant tx.

Since I was treated at a cancer center, all my tx was coordinated. But I still trust my breast surgeon the most. (That's not to say that I didn't get both surgical and oncological 2nd opinions before proceeding with any treatment.)

Best wishes to your wife. Once she gets through the chaos of diagnosis and has a plan of action, things will settle down a bit. When I look back, I put one foot in front of the other, made the necessary appts. and just showed up--it was all very surreal. I am coming up on the 2nd anniversary of my surgery, and it's still jarring to me that I had cancer, lost both of my breasts and went through chemo. Your wife and you will get through this.  

Dad5309

We made it back from our Sloan Kettering 2nd opinion visit.  They strongly said chemo needs to be first before surgery.  They got us a PET scan the same day.  Also saw an oncologist who discussed chemo.  So we had to change gears from surgery concerns to chemo concerns.  Our local surgeon supports the chemo first.  So we returned home and made an appointment we could get with a local oncologist.  I thought it went OK but then my wife talked to the surgeon and oncologist at Sloan Kettering and there are major issues with the chemo they want to do here.  Also they want a port in here and Sloan is saying that is unnecessary.  And the PET scan results show "concerning activity" in her liver. Sloan wants her liver scanned and if there is something there a biopsy to confirm or deny cancer in her liver; preferably before chemo but the local oncologist wants to start chemo and then get to the liver.  And I guess they don't agree on the drugs or timing - I thought before we went in both were suggesting every two weeks but my wife says locally they want every 3 weeks and after talking to the Sloan oncologist she is saying it may need every week.  And there is an issue with a port; Sloan says not necessary; local wants it done now.  So is total chaos.  My wife wants to go to Sloan (and they impressed me too) but it is out of our insurance network.  I just can't believe how complicated every little step has been.  Only shred of good news is the HER2 came back and she is positive.  But other than that we are close to the end of our rope and we haven't even started or agreed a treatment.