TRIPLE POSITIVE GROUP
Comments
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Oh, I see. It's weird the way they do the herceptin. I was expecting a larger effect. The article that they list about the herceptin part of their study is not published yet or at least I could not find it. It's another tool of interest but obviously all tumors are different, that has been in the press lately, so it's general info. Plus tumors seem to be heterogeneous in composition so maybe it depends on where they get the biopsy as well. So many unknowns!
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I think the problem is I was node negative with larger tumor (over 5cm). I don't think there are a lot of women with tumors over 5cm, HER2+, grade 3 and no nodes. The sample must be small. If I had 1 node the benefit doubles.
Also remember this includes women with mets. You can be alive in 5-10 years but not be NED. So that might be why these stats are sort of strange.
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lago - I did not see inclusion of women with mets, article says it is for early breast cancer. Where did you see the mets part?0
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It says the outcome is "alive in 5 year alive in 10 years" You can be early stage then in 5 years be alive and with mets.
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Yes, they didn't do recurrence which was a disappoint. I think Adjuvant! is the only one that is doing recurrence. But I think that initially all were non-metastatic, is that your take? One of the articles above validated the program using the same population as was used for Adjuvant! and they were similar.
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Yes that is my take. I guess my problem with these is I don't have enough information about the stats. And even if I did I'm not a statistician. I'm pretty good and understanding but no expert.
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Me neither. At my second opinion appointment the onc handed a printed copy of my Adjuvant! stats with very little explanation. Granted my head was probably not in statistics mode that that point anyway since she had just finished writing down a list of chemo side effects! But I did take it home and spend some time trying to figure it out. I thought this new tool was interesting since it included herceptin.
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Hi Shore1, I did accupuncture all during chemo, I would go 1 x a week on non TX weeks and then 2 X on TX weeks. I think it helped with the long term SE. Also, when I was able to move around after last TX pilates helped a large amount with minor LE and severe joint pain. I live in NJ and went to a place in Bloomfield.
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Nmoss, glad to hear it helped you. I finished chemo 2/1 and feel pretty good except for insomnia & hot flashes, so maybe ill give acupuncture a try. It would be great if it could help me with anxiety too -- I want to stop thinking about bc every minute, just not able to do it yet.
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Hi Shore 1, there is a transition from being in physical survival to emotional survivor. For me Once the chemo SE subsided I was able to get some emotional relief from it. More or less when I was physically able to get back to " normal" I was able to fill my mind with "regular" life. Good luck to you.
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Hi Shore1, I also do acupuncture. I had been doing it prior to diagnosis and increased my visits throughout active treatment. I love it! It helps me with my digestive problems (#1 SE from chemo for me) and it calms me and allows me to relax. I often nap during my treatment.
I go to a community acupuncturist and this means that they see multiple people simultaneously in a room. We recline in recliners and people come in quietly every 20 minutes or so.
I'm afraid I don't know any place in Jersey. The place in Seattle I go to is Pincushion: http://www.thepincushionclinic.com/ Perhaps if you contact them they can suggest a place in Jersey or a method of finding a good place. I found Pincushion through a friend.
I understand your thinking about bc all the time - I keep a little radio beside my bed with earphones so I can listen to talk radio when I wake up in the middle of the night. I need something to distract me! Work also helps, keeping busy is my answer.
I wish you well!
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Thank you NWArtlady & Nmoss - really appreciate your replies
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Hi All-
My daughter is 38 and lives with us; she is not working during this time. She was diagnosed with IDC with a 6.5 x 6cm tumour in her left breast in September. It had doubled in size from the initial doctor's vist, through 3 biopsies, multiple ultra-sounds and MRIs. She was started on a regime of FEC-DH as she tested triple positive. There are 2 more chemo treatments to go and then 17 more H treatments will continue during the course of her surgery and radiation. Then she will take Tamoxifen for 5 years. We haven't been given a finite classification of her cancer status, but no node involvement was evident from the scans they did perform.
We see the surgeon this Thursday, and I wonder if a full mastectomy is still required as the tumour is down to the original size of 3x3cm? It did not shrink after the 6th chemo, but they are still continuing with the 7th & 8th treatments. I think she takes it all in her stride, far more than I do. I am worried about recurrence and her reaction upon waking from sugery minus a breast. They have begun genetic testing, but there is apparently only a 5-10% chanced of her being BRCA positive, so I won't worry about that.
I guess I am looking for direction on how best to advise her and how best to be supportive. Her brothers are pushing for a bi-lateral mastectomy, but that is too drastic for me at this point, without definitive reason. Am I being naive? Dad is quietly stressed.
The lastest word from her oncologist is that her tumour is what it is and they have done all they can prior to surgery. I was disappointed that the shrinkage did not continue, but do not know whether that is common or not?
Any thoughts? Thank you in advanced for the time it takes to respond. This last winter has been a constant blur of hospital and doctor visits. She has finally ceased her menses and is having menopausal hot flases etc.
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I think the best thing is to let your daughter decide what is best for her. I would have been freaked out if my family had been telling me what to do. I was already freaked out enough. I was very fortunate that I had good doctors and was able to do this at my own pace. Sorry to sound so strong, but I am just speaking for mysef.
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Hi BJBKM63, I also think that unless your daughter is disabled and not able to make her own decisions you should all be supportive and use these words frequently: "It's your decision and we will support you whatever you decide to do."
regards Jenn0 -
BJBKM63 The best support you can give your daughter right now is to listen. I know it's hard, as her mom not to advise, but try to refrain unless she asks for it. Do not tell her how she should feel, that she is being negative (although it sounds like she's doing better than you). At 38 you sometimes forget, she is an adult. I bet she's smart too.
I know initially I wanted a BMX. My tumor was about 6-6.5cm (including the non invasive part) and I wore a small 34 A/B bra. I had dense tissue and the tumor was in the posterior region. I had a scar 4 years prior but every one said it was nothing… wrong. My thinking was if it too them so long to spot this because of my dense tissue I want a BMX…
My BS at the time said he didn't feel the need to remove healthy tissue but would support what ever I wanted to do. He wanted to wait for the MRI and BRCA test. Well the MRI showed some suspicious stuff in the other breast that would have to be biopsied every year. At that point my BS changed his tune and recommended the BMX. Ended up being a small amount of LCIS. I'm glad I did the BMX.
Waking up was a bit surreal but you know what. I still felt like me… just sore and nauseous from the anesthesia. I never had surgery before so it was a bit scary to lop off body parts.
It's a long journey but it does end and her life will go on. I've made some wonderful new friends along the way too.
Hang in there mom. I'm sure she is worried about you. I know how hard it was to tell my mom. I still get teary eyed thinking about it.
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I am a 44 year old woman who recently had a bilateral mastectomy. What I needed from my family while I made the tough decision was a listening ear and SUPPORT for my decision. I was happy to have my family help research options and give me their opinion, but when I finally made my decision, I didn't want anyone to make me second guess myself. I am happy with my choice. It wasn't neccesary for me to have a double mastectomy, but I did it for MY OWN peace of mind. It might not even be a logical choice that I made but for me, it felt right. I felt informed in my decision.
I had never had any surgery before this and it was a little weird to wake up without breasts, but I still feel like me and honestly, I don't feel weird without breasts at home, though as summer approaches, I feel less comfortable in summer clothes in public. I go Tuesday to pick out some new breasts, but many people get implants and that works for them.
No matter what her choice and no matter if she changes her mind, just tell her that you support her decision and will love her no matter what.
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She doesn't have to wake up without breasts.
They can take the breasts and do an immediate reconstruction (begin) it with tissue expanders (TEs)..that is what I did...my breast was "gone" but when I woke up, it was STILL there.
And frankly, by the time I got to that point, it wouldn't have bothered me either way. Going into this I thought my hair and boobs mattered way more than they really ever did.....I never had a crying/drama/bad experience with losing the hair or losing the boob.
It just is what it is.
Good luck to your daughter. And how interesting her brothers have an opinion!! lol The men in my family won't even speak of it.
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To help your daughter decide, she can ask her surgeon if lumpectomy is an option given the location and characteristics of the tumor, in his/her experience. Sometimes a person with that size tumor may be a good candidate, sometimes not. So far I am happy with my choice for lumpectomy, but others are happy with their choice of MX. Since final pathology is not in, you don't know exactly what she is dealing with. I wish her good luck with her decision--she is young.
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I have to agree with everyone else on this board- just lend your support for her decision. There are many here who did lumpectomies, and many who did BMX or MX. Your family history, tumor size, pathology, etc, will help decide. But the decision is hers. Not an easy decision, but one that will be made, and needs to be supported. Blessings to you all. Much love
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I finished my chemo four months ago, still on herceptin. My blood work has been coming up each time, until last week and now it is going down. Has this happened to anyone else?
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Just wondering how long before you didn't get your period anymore after starting chemo? I have had one TCH just over a week ago and I got my period toda. Wasn't thinking that would happen anymore but maybe it takes time to stop?
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I had my last period 2 weeks prior to chemo. I was 49 at the time and perimeno although my cycle was pretty regular. Both my onc and I knew it wouldn't come back based on my mom & sisters schedule for menopause (starting at 51 ending around 53).
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angela - I had one period between chemo 1 and 2 and then no more. I was 51 at the time and still having regular periods, though probably I was peri-meno.0
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Angela--I'm almost 47 and still get a regular period, and did, throughout chemo and now Tamoxifen.
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Did you guys see this about the protective effect against recurrence for aspirin?
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Yes I have that on my list of questions at for my yearly onc visit next month
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Cool, I'll be interested to know what she says!
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NancyJill, that must be unusual, huh? What does your onc say about that? Is it a bad thing since you must still be having hormone fluctuations?
Angela
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Lago....I forgot about flashing...although my halvies for nips would have looked pretty funny. Sherry, the friend we were with always has to look at every step. She is actually now referring patients to my PS as she said she sees lots of reconstruction and his looks good.
The river greening and the parade were fun, but crazy crowded. I was a little underwhelmed by the parade. Actually it is basically a longer version of our parade here in Indy. The college kids we stood next to were hysterical though and made it fun. Even offered to share their "spirits" with us. Then we went to the Emerald Loop irish bar. Ok...that was a mistake. So unbelievably loud. Fortunately we could eat outside. Uno's was delish. Purple Pig was the best food of the weekend!
Regarding my husband....while Lago and I were wandering around Macys on State with my friend, my husband, who had come separately to Chicago due to work, arrives. We tell him to take a cab to the store. He calls about 15 minutes later to say he is by the Dior and Clinique counters.
Ok....we go there. Cant find him. Call him again...he is insistent saying he is by the dior counter ner the escalator. Hmmmm....the Dior counter is nowhere near the escalator. Suddenly we realize he is at the Watertower Macys. He maintains he gave the correct info to the cab driver. I'm not buying it.
To the mom of the 38 year old daughter...TonLee is correct. If she were to choose a bmx, she does not need to wake up with nothing. My tissue expanders started out at 240 as I was pretty large before that. I was both surprised and pretty happy when I looked at them. And, if I had it to do over, I would explore further the direct to implant procedure. I wanted to be smaller and I think they would have had plenty of skin there to work with.0
