TRIPLE POSITIVE GROUP
Comments
-
I received the head cover from BestWishes and even though it is a nice color and fine quality, it screams chemo all over me when I try it on, I guess I will just stick to the hats, it is already cold here so. The card was very moving though, signed by many people, I was very grateful
0 -
T-Sue, what a lovely picture of you and your son. Absolutely precious! He looks just like you too. Thanks for sharing :-)
0 -
T-Sue. I love the photo of you and your gorgeous little boy 😃😃. You look amazing!!
Cherry - our lives have changed so much since our diagnosis. Some days I find it so hard when I look in the mirror and don’t see the “me” that I remember from before. My hair is starting to grow again, my chemo and radium are finished and my herceptin will be finishing next March. We will get through this. And we will start feeling better about ourselves. I’m looking forward to having a “chic” new look when I return to work in the next 6 weeks or so (have never been “chic” in my life but I live in hope 😂😂)!!
Sarah xxxx0 -
GlasgowGirl, I always loved the chic looks and tried to pull it some time, this is not to me to decide, but sometimes I did well. I have shaved my head yesterday. I vut my Gollum hair short but it looked awful and I slowly and gently shaved it. On the top of my had there is a fluff that would go with the razor, like a fluff on the a baby duck, I believe this is my hair start growing again. I am not sure I will keep them if I proceed with EC, my oncologist and I are considering to switch two last Taxol to 3 DD EC because you and I, we get the same treatment but my tumor was invasive, had LVI, hight Ki67 and was a borderline for this treatment. I do not want to do anthracycline but I feel I need to throw everything.
Today I am going to my an appointment with my psychiatrist and I wear my wig for the first time with a hat on it, the wig has long hair. And I felt so bad looking at my self that I finely decided to put some make-up on, still looking sick but at least somewhat tended.
You should go for the chic look and take care of yourself, if now is not a time when then?
I hope you can still join your mom and sister on this vacation in Glasgow. I would like to go there some time too. Where in Ireland are you? I have a friend in Galway.
Cherry
0 -
Cherry-sw I was living in Pennsylvania when the accident at Three Mile Island occurred. I remember when it occurred, my father and I and a co-worker were loading a truck not too far from where it happened. I was 16 and we just kept on working on the dock...I never thought of it much until BC occurred and the thought seeped in. I also had a spontaneous pneumothorax in 1989 and had daily chest x-rays for 20 days (and then a few after that sx) and that has been on my mind for years. I always wondered how all of those x-rays affected my health. Who knows why it happened?
0 -
Thanks for the responses. I had a baseline and then a check in June because my blood pressure kept dropping. I should finish Herceptin in December, but am just having some odd side effects recently and was just wondering what the protocol was for others.
0 -
moodyblues, I was 150 km far from Chernobyl during the first two weeks after explosion before our parents managed to drive me and my brother to another city to send us to our grand parents who lived far away. We came back after 15 months and then after after three years I moved for good. My oncologist wanted another multidisciplinary conference to discuss whether I can take an anthracycline or not because of the amount of radiation I have received during those first two weeks. There is no higher incidence of bc in that area though, since there was a lot of radioactive jod people have problems with thyroids, I was checking my values regularly since my mom has developed hypothyreos back in 90-es. My BS did not think that being exposed did contribute to my bc. But I do wonder of course.
Cherry
0 -
What is the name of the test that tells you if your children are at risk for developing BC. My daughter's doctor told her that I have to take the test (that her insurance would not pay for it).
What is the name of the test that tells you the % risk of you getting BC. I am still thinking about having the healthy breast removed (they say it is healthy) but, we all know if we have breasts we are at risk for BC in the other breast as well.
I met a woman who had her implant placed immediately after the mastectomy was performed (no tissue expander), I was wanting to do the same thing. My question is, when you have a prophylactic mastectomy, I assume that they test the breast tissue for cancer. How long does it take to do pathology on all of the tissue? I would think it would take a good bit of time to check all of the tissue right?
Thanks for your answers or thoughts on this!
Melanie
0 -
moodyblues, there are several types of panels. BRCA1 and BRCA2 are typically the genes referenced. Normally, one would have genetic counseling before the blood draw. At that point, the panels are reviewed and discussed in light of your history. Then a decision is made about how extensive the testing could be.
Direct to implant surgery might only be performed if there is little chance that radiation is required. Otherwise, most plastic surgeons would wait.
Typically, there is preliminary pathology executed during surgery and then complete pathology performed after surgery. The final pathology usually takes a week to two weeks.0 -
moody blues, do you have a family history of cancer? Insurance may not pay for the test for you either, it depends in your family history. My insurance covered a genetic counseling appointment where they take an extensive family history. They determined my cancer was not likely related to genetics so genetic testing would not be covered.
If taking your healthy breast would make you feel better than that is all that matters. Doctors and family can advise, but only you know what is right for you.
0 -
HapB, as I said the incidence of bc in that area is not much higher than in other places in Europe, but we do not know how it affects one particular individual. I was overthinking of what particular could cause my bc, pretty pointless anyway, I cannot do anything about my past.
0 -
Moody Blues (Melanie),
Go to the forum breast implants 101 by WhippetMom. Tell her what you are thinking and get her take on immediate implants. Frankly, I would not do it as I am unsure you will get the "final" result you want.
My pathology reports came back quickly (next day or two). My Mammaprint took a couple of weeks.
Until your MO fights for the tests you won't know what will and will not be paid for. My MO did fight for all my tests.
As for your decision to have the double mastectomy, as Debiann wrote, that is your call girlfriend. I believe we each must do what it takes to get cancer in our rear view mirror.
I want you to go into this decision with eyes wide open. I am lucky. 15 months post mastectomies I have sensation and very little numbnes restricted just to a limited side of each breast. You will want to make pictures of your breasts. Print those pictures and take them with a pen to your surgeons. Have them draw EXACTLY where they will cut.
Healing takes about 6 weeks of very limited mobility. You will not be physically able to open your refrigerator. (Well, you can open it but it will hurt and you may drain for a longer time.) The more you limit yourself physically the quicker your drains get out. Drain tubes are a pain. Sponge baths were part of our normal routine for weeks it seemed.
Emotionally I got to the place where I hated my breasts. The double mastectomies was a somewhat easy decision for me and one I have not regretted. But that is me.
Let me know if there is anything else I can share with you.
Best wishes as you go forward. That is what is important to remember ... You are going forward.
Vicky
0 -
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.
0 -
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
0 -
moodyblues, the car comparison make me smile)
0 -
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
0 -
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.
0 -
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
0 -
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.
0 -
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.
0 -
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.
0 -
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.
0 -
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?
0 -
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
0 -
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
0 -
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.
0 -
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
0 -
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
0 -
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
0 -
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
0
