TRIPLE POSITIVE GROUP

Hi all - have been a bit out of touch as I was in California for my HS reunion - had a lot of fun - saw lots of people.

linda - at my last PS appt right before I left he now wants to do some preliminary fat grafting to the flat side, much like they are now starting to do with radiated skin.  It seems to help rejuvenate the skin and help it develop some vasculature and stretch more easily.  So it looks like I will do that prior to putting the expander back in.  This will mean more procedures and a delay in the visible recon but this is my last shot at this type of recon.  If this fails I will have to go to a flap of some kind, which I really don't want to do.  I am viewing the free lipo as a prize just so I can wrap my head around the delay.  As far as the Bucs go - I don't think you have actually missed anything, lol!  I know those late games make it hard, and you have a drive afterward.

Hi All,

I was dx with IDC one week ago today and received my triple dx today.

Results are

ER=100%

PR =95%

Ki-67=10%

HERaNeu = 2+

Maybe I should have posted this elsewhere but I'm trying to take all this in.  It's a lot!

Thank you to all for any information you can provide.  The radiologist didn't explain any of it.

Thanks,

OceanSky

hi oceansky, those are all your stats for the kind of cancer you have, and it gives the doctors the ability to give you a treatment plan, er/pr tell you if the cancer has receptor cells for hormones-- er is estrogen, pr is progesterone, the her2 is a protein on the cancer cell, all those things guide your treatment 

OceanSky

Sorry to meet you this way but welcome to the forum. Of the 3 positives, progesterone is the least discussed . Approximately 75% of breast cancers are estrogen positive .. The cancer is fueled by estrogen. This gives your medical team another  target for treatment. Most of us estrogen positives will be given either tamoxifen or an aromatase inhibitor after we've gone through most other treatments  to prevent the estrogen from refueling the cancer. They each work in different ways and which you get usually depends on your menopausal status.

My doctors say being estrogen positive is a very good thing!

And being Her2 pos after the discovery of herceptin  has gone from being one of the worst to one of the best prognoses:) lots more weapons for us her2 pos girls in the pipeline too.

Welcome rose and ocean. There are some wonderful ladies here. So ask all your questions, and someone should be able to help you.

Wow Ashla, thank you so much for your reply and the way you put it.  You really turned my head around.  So these are really not for the surgeon but for the oncologist?  Or is the surgeon helped by this information in any way?

I have 2 tumors very, very close together in my left breast and they are small yet I felt the lump and the lump sure feels big.  I'm surprised as was the one surgeon I did see that the radiologist didn't biopsy them both.

Rose, thank you also.  Yes, it is all happening so fast.  Am trying to choose a surgeon and have decided to leave town, (Orlando) and go to a NCI hospital.  How did your surgery go?

Thank you again so much!

Love and Light...

OceanSky - I'm sorry for your diagnosis but glad you found your way here.  This site has been so helpful to me during this whirlwind. I'm having chemo before surgery as well.  I was diagnosed on the 19th, had my first round of chemo on the 28th and go in for round 2 this Thursday.  

oceansky - I would advocate that you be seen by an oncological breast surgeon, rather than a general surgeon.  Traveling out of town for surgery is commonly done, and you do have the NCI option relatively close by, but there may be some options for you locally too.  There is an active Orlando ladies thread, you might want to see if you can ask who they have been treated by.  One thing about NCI - they will most likely want you to see their docs for all of your treatment, and that is the point of going there - that means surgery and post-op appointments, and more appointments with a plastic surgeon if you choose the type of surgery that requires reconstruction as well, potential for chemo and targeted treatment (if you are Triple Pos that means a year of infusions), and possibly radiation (could be as long as daily for 6 weeks).  That could mean a lot of traveling!

https://community.breastcancer.org/forum/34/topic/823122?page=1#post_4122073

oceansky - an oncological breast surgeon is a breast only surgeon specializing in breast cancer.   A medical oncologist is the doctor that treats you systemically.

Thanks for that...I guess I'm referring to surgeons in Orlando who are also oncologists.  There are several that were on my list from the radiologist.  Many were with MD Anderson here in Orlando which recently (in the last few months) left Orlando.

Am not sure why/what but all the MD Anderson doctors stayed in Orlando.  I had to see their then Chief of Oncology/Hematology for another issue that was not actually a cancerous issue and I was surprised to see that he is also still in town and with Orlando Health, the hospital group here locally other than Fl Hospital.  Am guessing MD Anderson in TX couldn't reabsorb them all but am uncertain.

So all the general surgeons that were with MD Anderson are now with Orlando Health and they are ALL also oncologists. Am not sure how that works?

As for the breast surgeon I mentioned, there is only one surgeon in town who operates on breast by GoPhoto.it V9.0" style="border: none !important; display: inline-block !important; text-indent: 0px !important; float: none !important; font-weight: bold !important; height: auto !important; margin: 0px !important; min-height: 0px !important; min-width: 0px !important; padding: 0px !important; text-transform: uppercase !important; text-decoration: underline !important; vertical-align: baseline !important; width: auto !important; background: transparent !important;">cancer patients only. She has a bit of fame attached to her name due to a radiologic process she had a large part in.  Her name is Dr. Olga Ivanov.  http://www.floridabreasthealthspecialists.com/med... There are also videos of her online talking about this process.  Read her credentials....An amazing woman!

So that's what I meant by a breast surgeon...Someone who is a 'board certified fellowship trained breast surgeon' Check her out SpecialK.  I've considered seeing her.  But am torn between her and the Moffitt   It's a big decision.

Btw, I tried to PM you and it said I had exceeded my PM's for the day.  I waited until after midnight but it still gave me the same message.  Do you know how that works?

Thanks so much!

SpecialK, makes perfect sense about oncological surgeons not being oncologists but rather surgeons who perform surgery on cancer patients.  Got that part.  But it's unusual in central Fl to find a surgeon who does nothing but surgery on patients with breast cancer.  Commonly referred to as a breast surgeon.  The only one I found is Dr. Olga Ivanov.

Personally, I'd rather have a surgeon perform my BC surgery who does nothing but operate on breast cancer and not all kinds of cancer.  It's that simple for me.

What I don't understand is why Orlando Health Hospital has any affiliation with the U of Fl, (my alma mater) when UF has it's own medical school and hospital..Shands Hospital.   It's only Orlando Health's cancer center that's affiliated with UF.

Anyway, three of the surgeons you linked to are the ones my radiologist refers patients to.  Also amongst the doctors in that link was the Chief of oncology and hematology at MD Anderson.

Okay, something of interest to everyone!  This article talks about BC, mammograms, and chemo with the comment: Mamounas said 60 percent of breast cancer patients don't need chemotherapy, and significant progress has been made in treating low-risk patients with less toxic therapy and chemo is being saved for those who are high-risk.

60% of BC patients don't need chemo?  That's startling to me. Is it to others much more knowledgable than me?

The same article mentions my radiologist who was the 3rd in the country to get a 3D mammography machine.  It's made a world of difference for me.  My breasts are so dense that a 2012 mammogram from Dr. Curry's office is almost  impossible for a doctor to read whereas the 2014 3D mammogram is clear as a bell.  I hope this is available soon to all women.

http://www.orlandosentinel.com/orl-jns-510335053-orlando-college-park-20140915-story.html#page=2

For me choosing a BC surgeon is a difficult choice.  I've had seven major surgeries in my life...Several at Mayo in MN, also at the Brigham in Boston.  Normally, I'd research and get on a plane and go but with BC there seems to be so much coordination amongst the surgeons and the oncologists that I'm leery of that.  Am not sure how keen a local oncologist would be taking orders from an oncologist out of town.

Surely others have gotten their BC surgery out of town and their chemo at 'home'?  Just wondering how that worked out for them?

This is probably a topic for another thread but if anyone here had surgery away from their home town and then returned home for chemo I'd be interested in hearing your experience!  

Best...

Ocean, I was one who went out of town for surgery, then did chemo close to home. Both my breast surgeon and plastic surgeon are at the same hospital about 1 1/2 hours away. I did Chemo at my local hospital 20 minutes away.  The coordination between doctors at different hospitals was not a problem, but you do have to take into consideration the travel time and traffic for all the appointments. Also you have to meet with the doctors and feel comfortable with them. They might look good on paper, but you really have to meet with them in person and make sure they are someone you have confidence in and will listen to you and answer all your questions. The first BS I met with was highly recommended, very experienced, head of the department and really arrogant. I knew he was not the doctor for me. Once you find your team of doctors you will be ready to go!

ocean - I believe it was an opportunity for UF to have a satellite location in Orlando that presented itself when MDA vacated.  I also believe that if the docs are listed as Breast Center oncological surgeons in that department, that is all they do - they handle breast cancer, or benign breast conditions that require surgery.  I don't think that is different from the doctor you mentioned.  Remember that all of these docs are board certified in general surgery - all of them did general surgery at one time, and then specialized further in breast disease.  We have a number of oncological breast surgeons in Tampa that are not at Moffitt.  One of the reasons I mentioned that the docs at Moffitt would suggest that you have all of your treatment there is that they take a group approach - the surgeon, med onc and rad onc all discuss the case and work as a team - that is one of the reasons to be seen there.  If you only want to have surgery there, that is certainly your choice, but I am not sure it is worth the trip over just for that.  If you choose recon and need a plastic surgeon, or require treatment from a med onc, those are much longer lasting relationships than the one with your breast surgeon, and IMHO those relationships are more critical than the choice of a breast surgeon. 

Oceansky, my tumor was also very close to my nipple.  My BS recommended not saving the nipple because of the chance of local recurrence in the nipple area.  Im sure you'll be able to find some info/stats online to read.  I feel it's very important to feel comfortable with your medical team.  You will be seeing them for a very long time.  I moved from Indiana to Ohio as I was getting ready to start chemo.  The MO I found in OH was very arrogant and somewhat of an a$$.  He was recommended by several people and does a lot of research but he certainly wasn't the one for me.  I chose to drive almost 3 hours every three weeks to finish the last 3 AC treatments.  I did find a new MO and BS in Ohio that I really like so now I can finish up treatment and reconstruction here.  

Ocean, I had what 2 doctors thought was either scar tissue or a cyst on the BMX scar line removed by a local BS. He was considered the best at that hospital but I was not happy with him at all. So when the pathology came back positive for BC again, I knew I would be going elsewhere for a second and third opinion and would not be staying at the local hospital. I wound up seeing two BS's at two different hospitals in Philadelphia. The first one was very arrogant and old and not a good fit for me, the second was the one I used. His bedside manner was not great, but he took the time to explain everything and addressed all my concerns. He is also very involved in the research to develop a vaccine for DCIS patients.