TRIPLE POSITIVE GROUP

CCNC

HapB, I am not blaming the Herceptin. I am just trying to figure out what is going on. I think it is just the combination of chemo, surgery and radiation catching up with my body. Although my body does not like Herceptin. I had a very strong reaction with the initial dosing and it has continued to make me sick every three weeks all year. Just really looking forward to being done. Hope everyone is doing as well as they can this morning.

moodyblues

Suburbs and Debiann Thanks for the information on the BRCA1 and BRCA2 tests and the genetics testing.  I was adopted and do know 'some' of the family history, we do not have BC that I am aware of but have multiple colon cancers (death of grandfather, aunt, one sister) (one other sister had a colon resection and survived!!!).  If only we would have know about the colon cancer history earlier-my sister may not have died from this terrible disease.  I get a colonoscopy every 3 years and will continue to do so until death do us part.  The pathology timing was a biggie if I have the remaining breast removed, I want to be sure that they check that tissue out really well and I was not sure they would have adequate time if they did a direct to implant.  If I do chose to do a prophylactic mastectomy on the right breast, I want to know, that I know, that I know, that all of that tissue is healthy before I move forward to reconstruction. I would hate to know after a week......well, you know what I mean without me saying it.  

Vicky, I will go to the forum you suggested and ask her my questions.  I will have the tissue expander removed and the implant put in on November 28th, 2017 on the left breast, I am anxious for that side to be completed!  I haven't had any problems with the tissue expander except when trying to sleep on that side.  I do have some sensation on the skin on that side but alas, no nipple. 

What I said above about knowing that the tissue in my other breast is healthy is of course of the utmost importance, I would love to get the right breast done all at one shot.....one stop shopping if I may!    My reconstructive surgeon recently asked me if I wanted a breast lift on the healthy breast so I would be symmetric, mind you, this was right after I mentioned the possibility of a prophylactic mastectomy.  What a dummy, why would I invest the time and money into a breast lift and then have a prophylactic mastectomy?  MONEY perhaps?

The pictures at this point are a negative, too late for that because my one breast is in the midst of reconstruction.  I had a pneumothorax years ago and they cut under the right breast and around to the center of my back, my right breast never did look the same afterwards, it sagged some and was a bit smaller and I had lost a bit of muscle tone on that side as well.  If I do follow through, they will probably look more symmetrical than they did before BC.  

Thank you everyone, at this point I feel like a car in the midst of bodywork  Right headlight shines bright but has some screws that need tightened and adjusted.  Left headlight is partially completed and is just waiting on the installation.  The electrical, the brain of it all will take far longer to fix..............    I am moving forward!

Melanie

Cherry-sw

moodyblues, the car comparison make me smile)

coachvicky

Melanie ...

My apologies. I thought you had a lumpectomy and as soon as I read your post remembered otherwise.

It reads like you have thought this thru and are on top of it. Saw where you posted to WhippetMom. She is awesome.

BTW, have you had a breast MRI on the healthy breast? That is where my 4cm lobular showed up on the "healthy" breast. A breast MRI might provide some additional information to help you make your decision.

Keep moving forward!

Vicky

toughcookie_21

Moodyblues, I had my right breast removed prophylactically and they did test the tissue after the mastectomy. They had actually seen an area of concern on my MRI, but it turned out to be fatty tissue in the pathology report. I would definitely ask for the tissue to be dissected if you're going to have the other breast removed.

moodyblues

Vicky, no apologies necessary!  You have been such a great help on these boards and probably got me mixed up with someone else.  Yes, I did have MRI's of both breasts (right before the mastectomy), that is when they also found DCIS as well in the left breast at a different area and I decided on the mastectomy instead of the lumpectomy.  Thank goodness for MRI's.

Cherry, gotta have sense of humor to get through this. 

Toughcookie, Thanks for your reply.  I was concerned that if I did the direct implant that they wouldn't have time to thoroughly look at ALL of the tissue in the breast, I didn't want them to be in a hurry and miss something.

Melanie

Suburbs

Moodyblues, if you had a BMX, pathology would be performed on both. In my case, the preliminary pathology was a SLNB. The sentinel node and a few others were checked out at the beginning of the operation in order to determine how extensive lymph node removal should be. It's all preliminary so there is in theory always the possibility that the final pathology is positive and more nodes would need to be removed after initial surgery.

moodyblues

Suburbs, I had a UMX in March.  I was curious how they could check ALL of the tissue if and when I have the prophylactic MX on the other breast if they do a direct implant (can they check ALL tissue during that small window of time?).  I have dx mammo on the remaining healthy breast in Feb 2018 and will be researching for answers until then.  ~I get what you're saying though...they could get the preliminary report only to find out a few days later that they see something suspicious.  Maybe I wouldn't be a candidate for direct implant because of my previous BC dx.  Hmm.

Cherry-sw

minneswede, I am in Stockholm, often travel to Småland for work but right now I am on sick leave. I have not seen you on this thread before but I am new here, diagnosed in June. Have you been treated in Mas? I am in KS, you can PM me anytime.

Cherry-sw

moodyblues, thank God for all you people with the sense of humor, knowledge and comfort, it really helps me through the day. Hope your surgery goes well.

coachvicky, I recognize this feeling about the breasts, sometimes I just want them off mainly because I just look at them and do not trust them at all but the clinic wouldn't offer me this option and even umx sound as a serious surgery.

The hereditary department called me today to inform that they will go on with my genetic testing, which was a relief not only for me but even for my elder girl who at first decided to stop with her birth control pills, then her doctor convinced her to start another pill but now she has decided upon an non-hormonal UID.

My oncologist has also decided that I will proceed with 12 Taxol and we will have a meeting or a phone call after my 11th to discuss what we want to do with my treatment.

KimCee

Hi everyone,

Hope all is going well, as well as can be expected.

So I got my port placed yesterday - was upset because I did not want it in my jugular. Well, that's where it is - yuck.

Today had my first round of chemo - the taxol and herceptin. What I found completely bizarre is that they sent me home with no script for anti nausea medication. I did very well 18 years ago with AT but I just found that odd. Did any of you experience that? Wondering if I should call tomorrow to triple check on that. It's good to have in the home just in case right?

Cherry-sw

KimCee, are you easily getting nauseus? I was asked that and told that I was and I therefore got prescribed an anti-nausea med to take after the infusion. The nurse explained to me that weekly Taxol is not usually causing nausea the same way DD is. I took my medication the first week that so far has been my worst of 10, even though the fatigue is cumulative, but after four days of taking the anti-nausea pill and feeling both yuk and restless I decided to check the SE and found out the restlessness could have been the SE from the pills. So I stopped and I did not need any afterwards. I agree with you that better safe than sorry and that you should have been prescribed one just in case but there is a chance you will do fine without. There is a group called weekly Taxol, you can talk to the ladies there, those who did DD AC say the latter is harder in terms of nausea Cherry

Gigilala

hello ladies

I am triple positive my oncologist want me to remove my ovaries

I saw surgeon Gyn today and she really square me

That the side effect after oophorectomy are very serious

Now I have to make a decision and I'm lost I don't know what I have to do

Please ladies share your experience with me

I am 39 years old

Thank you

KimCee

Thank you ladies. I have a cast iron stomach and do not get nauseated. I am just "better safe than sorry" and fill meds that I never use. I have to learn not to fill the narc meds after surgery because I don't use them either. They all end up in coffee grinds and in the trash, lol. I never took them when I had adria last time and was find. I think being a nurse and knowing what I know, makes me a non med taker!

HapB - I know right? The jugular is awful, I can see it and when I try to turn my head it feel yucky. Surgeon couldn't find the superior vena cava even with ultrasound help so jugular it is.

Gigi - I can only share my experience. I was 36 when my "no risk factor BC" showed up. It was "the best kind you can get! Per my onc and breast surgeon". Stage 1, grade 1, ER/PR positive, Her2 negative, no node involvement. My youngest was only 3 and onc said take the big guns. I had lumpectomy, chemo, rads, 4 years tamox, 6 years femara, zoladex to stop my period. It always came back. Had my ovaries out 7 years later. Hysterectomy 16 years later/2 years ago. Have osteoporosis and take Prolia shots for that. This past July, 18 years later Triple positive breast cancer in the opposite breast. It is a personal decision, you are young. You do want to block that estrogen, can you take zoladex or Lupron? Wishing you luck in making your decision.

coachvicky

KimCee ...

That does not seem right. Call for an Rx of dis - solvable Zofran (mint is the best).

As for the port ...that is where it goes. Sorry. Soon you will have "deportation." and we will all rejoice. BTW I HATED my port.

Vicky

Gigilala

Thank you Kimacee

My oncologist didn't tell me anything about Lupron and zoladex

He just put me on tamoxifen and he told me it will be better to remove my ovaries

KimCee

CoachV...I hate this port too! Stick around a year because I definitely want the deportation rejoicing lol. I will call tomorrow for the Zofran. Thank you love

HapB...aw thank you. We are all strong to get through this. Look at you, 3 cancer survivor! No one should have to deal with that. Hugs

Gigilala...personally, in hindsight, I would have just gone for ovary removal, ditched the shots, and fought for full hysterectomy so that I wouldn't have to be bikini cut 5 times. 3 c-sections, ovary removal, hysterectomy. Hoping you have peace with your decision

Cherry-sw

KimCee, you have been through a lot, I am truly sorry. I have a question, I do not know much about it, did not do much research about the oopherectomy and hormonal supressive yet, talking one step at the time, but what is the benefit of doing hysterectomy?

Cherry

coachvicky

I am older than many of you. My child-birthin' days are long gone.

My choice for a robotic hysterectomy started with my GYN. My husband and I met with him right after diagnosis. He said, "If you were my wife, I take everything. To leave anything would be medical malpractice."

With the robotic approach my recovery was easy. I did have lifting and exercise restrictions.

When I awoke from the surgery I had great peace. I knew I had removed body parts that the cancer could have attacked. I did have benign growths on my uterus and tubes.

Vicky

LTWJ

My oncologist said tne same thing, that’s why they did a scan before treatment that was chest up, to see if it had spread yet. My obgyn never mentioned anything about hysterectomy, only breast surgery options

ElaineTherese

I've gone back and forth about getting an oopherectomy. I've been doing Zoladex once a month for 2.5 years to suppress my ovaries, but don't want to do it for 7.5 more years.

I was premenopausal when I was diagnosed, but now I'm 50 and 51 is the average age of menopause. MO and I have talked about taking a 30 day break from Zoladex + Aromasin next March, and then testing my hormone levels to see if I am indeed in menopause.

My new OB/GYN is like my retired one -- she generally doesn't do oophs unless there's something wrong with the ovaries. Of course, I've never met her; I've just visited with her nurse practitioner. Oh well.

KimCee

Cherry, I am past the child bearing years too. When I was doing zoladex, many years ago, the recommendation was no longer than two years, I had done 4. It must have changed since that time and they will give the shots longer. My choice/decision was based on getting the estrogen out of my body. My period did came back despite aggressive chemo and zoladex. Estrogen is still around without ovaries and cancer of the uterus and cervix are not something I wanted to deal with.

coachvicky

Once again, we all get different information and treatments. Yes, HapB & LTWJ, my MO said the same thing about bones, lungs, brain.

It really is a maze to figure everything out.

My MO wanted me to wait on EVERYTHING until he was thru with all my treatments under him. I said no. My body and I run this show. Treatments and options were not going to last for years. My Plastic Surgeon and GYN did consult my MO and get his OK that I was strong enough for my implant and hysterectomy surgeries.

Also, I knew my periods could restart while on Arimidex. I am too old to shop for Tampaxs at the grocery store. That was not going to happen either.

Vicky

deni1661

Coachvicky- I admire your proactive approach and the decision to remove all cancer targets. I'm older and well past child bearing age. My MO never mentioned removing ovaries, uterus, tubes but I'm going to ask at next visit. I have had benign cysts removed from my uterus in the past so does that mean a possibility exists for cancer? Who knows but I don't want to take the risk.

You are certainly right we all seem to get different answers which is why this community is so helpful! I don't really want to sign up for another surgery but it would be well worth it to at least discuss the possibility.

So much to consider and think about.

coachvicky

deni1661

Thank you. I don't know if what I have done helps or not. Time well tell.

I have known my Gyn for at least a couple of decades. I trusted what he told me. The relationship with my MO started at diagnosis and we do not have the same level of trust. My Gyn also told me that I would not die from cancer. He said it may surface some place else but it won't be what I die from. I have no idea what all of that means. I just know my Gyn is extremely well respected and he has never steered me wrong.

Yes, without the women in this forum I would have been lost on this journey.

Vicky

Suburbs

On the subject of ovary removal, I was advised to have genetic testing first and then based on those results make a decision. My genetictesting was negative, so ovary removal was not recommended.

Gigilala

suburbs my genetic testing was negative too

And my oncologist recommended oophorectomy

coachvicky

Yes HapB, he is a guy.

Why?

VIcky

Cherry-sw

Suburbs, this is what I have been told too, I will proceed with genetic testing the next week. If one tests positive for the certain genes there is a risk of developing ovarian cancer, and the ovaries can be removed, but there is no larger risk for developing uterus or cervix cancers, the latter is caused by virus. The removal of ovaries to supress the hormons is not a common practice here because the body still produces enough ER on its own. I think SpecialK knows this subject, I remember a similar discussion.

Cherry

Gigilala

hapB: I am 39 years old

I am premenopausal