TRIPLE POSITIVE GROUP
Comments
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LaughingGull, I saw a few posts (including yours) these days saying MRI clean but still tumor remaining after the surgery, that is discouraging. Did you MO exam you after chemo and say clean as well? what could be a more reliable way to tell before surgery?
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Hi Lily,
Yes, my MO examined me after chemo and before surgery, and he said he could not feel the tumor anywhere; he could not feel the enlarged lymph nodes either. Same with the surgeon. They were both very optimistic, particularly after the squeaky clean MRI with contrast. Unfortunately, I still had a solid 2.5 cm tumor in my breast and macro metastases in my lymph nodes. I screen very poorly because my breasts are very dense. Not sure if there was anything else they could have done.
Lack of pathological complete response is very common among triple positives, pCR is not the expected result.
LaughingGull
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Coach Vicky - yay, so happy everything went well at your appointment. My MO has given me the same talk and it’s a good reminder for all of us to stay the course and throw everything we can at 3+
Hybrids - sending positive thoughts your way for a good meeting tomorrow with your doctor. Pathology reports can be confusing so reviewing with your doctor will hopefully easy your anxiety. I remember waiting on the pathology and how stressed I was too.
Suburbs I admire your positive outlook! Praying these latest antibiotics do the trick and get rid of that infection
Shelabela - people can be so insensitive, good riddance to that friend. Love your new tattoo.0 -
hybrids, glad they moved your appointment up. Things are hard enough no one needs to sit and stress. Praying for answers.
A question to those on Tamoxifen, did you have a ultrasound of your uterus when you started? My MO doesn't do a lot of unnecessary screening. I did go to my reg Dr and he did one with a Pap.
My MO did do a bone density scan. Which came back fine.
Thanks ladies about the Tattoo. Not sure who asked about size, but yes it goes across my whole shoulder
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Tested by core needle, 6 months ago, originally I was ER-PR- Her+++ with tumor 3cm and one lymph node test infected.
Then I go through 6 cycles of TTCHP(and a year of Herceptin). After dual target and chemo I achieve PCR as indicated by PET scan and I am so glad my surgeon enable me to have slnb and lumpectomy last month. Everything seems encouraging as the surgery is succeeded so I can keep my breast and lymph. 3 nodes taken and found uninfected. But pathological report show ER + PR + her2 ++(instead of +++)although no tumor shown, there is a DCIS left, non invasive. My surgeon said so I can keep my lymph and breast but need to take homo medicine.
Today I see my oncologist who is different hospital of my surgeon, he suggests me to take out of lymph nodes (dissection surgery) because lymph is infected before chemo, but NO need to take homo medicine because it is just DCIS. Now I am extremely puzzling and don't know who is right or better approach. Should I done lymph dissection regardless whatever my surgeon should suggest me beforehand. And ER + is it better to take medicine to lower recurrence risk instead of none? I really don't know what should I do next. Thanks everybody and God bless everyone
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Hi Hopeday,
It seems that your surgeon and oncologist are not on the same sheet of music. Even when everyone agrees, a breast cancer diagnosis and treatment plan is confusing.
I'd seek a second opinion.
Vicky
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shela my ob has not taken any measurements. I keep asking him about it, but he says it's not necessary, so I do not know. He did say I am to see him once a year, have a pap once a year, and if I ever have bleeding of any kind to treat it like an emergency and call his office immediately....
I see my radiation onc today for routine follow up..I love him. He has my whole life on an index card in his pocket...
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Wow, Hopeday. I am so sorry you’re going through that. If the Drs have a different opinion, it’s so hard to know what to do. I agree with others about getting another opinion. Chances are, instead of getting a third option, your second opinion will agree with one of the others and give a thorough reason why, which might help you make a decision about which way to go.
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Hopeday, sorry you're going through this confusion. I agree with others - a second opinion is a good idea. It may help with your decision and give you peace of mind.0
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Hi again everyone and hallo to all the new members! I have not been in here for over a year so catching up in the thread would take me a bit too long, however thought I would give some newcomers some positive reinforcement. I spent day and night on this site reading every post in the beginning. I am still NED. Yay! I hope it will remain. This summer I went to a cancer retreat for women recuperating and it was a wonderful experience. I met a doctor that reminded me that HER+ has great outcomes since Herceptin, perhaps she just wanted to give me some positivity but she mentioned this use to be their worst type but now it is the best! I have started to exercise more (not a lot) but I feel so much stronger since only a year ago. I can do more, walk longer without falling over. Worry becomes better with time as well for sure. Days go by where I do not think about cancer at all even if I only have one breast. I am not ashamed anymore to undress in the dressing room at the pool like I use to be. My hair is all grown back. I am on hormonal treatment but I am handling it. According to my doctor exercise is the best way to reduce symptoms, not crazy stuff, just getting your heart rate up twice weekly for at least 10 minutes. Walks and perhaps some more things that you enjoy. Anything. It gets the endorfines going and if you do it 3 times a week it will only take 3 weeks for the endorfines to kick in. it helps anxiety and depression. I am happy I am still here and just living life. Yes, I changed my job twice since diagnosis..:) Now I think I might have find something that I like to do without to much stress. There is just so much hope.
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I just wanted to thank everyone for the help today. I saw my surgeon and we've rescheduled another surgery for Monday so she can do more excision. She said there was only one margin that wasn't as clear as they like so she only needs to remove tissue from one side. She said the LVI does mean the cancer has a greater risk of spreading but since my nodes were clear, it's a good sign and makes it more likely that it hasn't happened yet. She said my M.O. will likely speak with me about the LVI being extensive at a later date, after we get past surgery.
I hope everyone is doing well and is recovering from surgery with minimal pain, clean margins & great results.
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Kattis!
It's so nice to hear from you. I'm glad to hear that you're doing well. And, look at you -- changing your job until you found one you liked! That's awesome.
It's been a bummer day for me. I found out that Magdalene51, the woman who founded my chemo thread (Starting Chemo in July 2014), passed away recently. She's the second person from my chemo thread to pass away. Sigh.
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For those of you who had neoadjuvant chemotherapy concurrent with herceptin, did you continue the herceptin schedule through surgery or did you stop it when you finished the chemo and then start it again after surgery?
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WC3 - I did one herceptin between chemo and surgery. My surgery was scheduled for the day when I would have had my next herceptin so that infusion was moved out a week. I am also doing herceptin through radiation
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WC3, I was told by my MO that I would continue Herceptin and perjeta through surgery also. I will reconfirm with BS but that seems to be the norm I have seen.
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WC3, I had a Herceptin treatment on a Thursday and had a lumpecectomy the following Wednesday. I have to have another surgery on Monday (to get clean margins) and will have a Herceptin treatment on Thursday. They didn't want to move or delay the Herceptin infusion.
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Question, are most people getting Herceptin only for adjunct treatment, not both Herceptin and perjeta
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Here are a few pages about Herceptin/Perjeta that you may find helpful, MACTAZ: Herceptin and one more Herceptin Plus Perjeta Slightly Better for High-Risk, HER2-Positive Disease Than Herceptin Alone
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MACTAZ - I was told that if I had residual disease after surgery, I might get Perjeta. Otherwise I'd get Herceptin alone. I did have residual disease after surgery but it tested Her2- so I am just getting Herceptin for now.
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thanks hapa, that makes sense,
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I am getting Herceptin and Perjeta.
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wc3 I had neoadjuvent chemo and didn't start my herceptin until after my surgery. I had failed lumpectomy and then BMX with diep flap recon and herceptin and AI both started after the last surgery. I have Lobular cancer and would have also had perjeta but I had such a bad reaction to it through 6 chemos( severe diarrhea with lost 30 lbs) so they said only herceptin.
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Thanks all for the replies. They are stopping my herceptin for surgery and then I will continue two weeks after. That will be a two month gap between herceptin infusions. I don't know of they do this standard where I am or are doing it because they are concerned about my healing. My port incisions were pretty slow to heal but I've read that herceptin does not significantly impaire healing and I think the chemo has more to do with that.
Now I am concerned because I just had a consultation with a 3rd PS today who underscored how aggressive my cancer is, and my dose was reduced 3 times during chemo because my bone marrow couldn't keep up, I did not have a pCR and now I will go five weeks longer without herceptin than usual.
I'm starting to feel like I am watching one of those movies where the person dies at the beginning and then you find out how, and it's about me.
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I did not quite understand the rational behind first having chemo then surgery. I only got to see oncologist after my surgery. I understand that it maybe easier to determine if the chemo is effective or not by measuring if one has pCR. But for her2 positive, it's not a good measurement. One can probably choose smaller surgery based on the result. Anything else?
Also saw the news about the study SpecialK probably attended. Can't find any further information. Anyone know if the trial is still open?
https://www.mydaytondailynews.com/news/national/ne...
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why why,
One reason why some HER2+ breast cancer patients did chemo before surgery is because the national guidelines initially recommended Perjeta for neoadjuvent chemo if the patient had a 2 cm or bigger tumor. So, to access Perjeta, it was easiest to just do chemo first. Now, it's easier to access Perjeta after surgery.
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ElainThere: Thanks for the explanation. Guess I was lucky that they approved Perjeta for me (tumor 2.2cm)
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Happy now, my MO agreed to let me continue with the herceptin since my surgery is a month away :-)
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Hi all, just stopping by to say hi! Still around. Busy summer with my 91 year old mom in and out of the hospital and rehab. No falls, but had a gall bladder blockage, and a few months later, a minor heart attack. They saw a mass on her lung, which they don't know if it could be cancer or not. She's having a ct scan Tuesday, but she is pretty significantly diabetic and has a heart function of 15%. I'm not sure what knowing if it is cancerous or not will do because she can't have surgery and will not do chemo. And she is still feisty lol. Returned to her apartment where she lives with my brother, who really doesn't work or do anything redeeming, but he does care for her well.
Elaine there-I thought they were doing chemo first now in some cases to see how your tumor reacts to chemo, rather than surgery and then chemo where they don't really know if its effective. I had surgery first, and thought I had dodged the chemo bullet until it came back triple positive.
I am many pages behind as I haven't been on here in awhile but I hope everyone is doing well.
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Welcome back FluffQueen... best wishes to your Mother. I pretty sure at 91 I would not do surgery or chemo but I don't know.
I greatly admire you ladies that can do chemo first and then see your outcomes. I do not have that level of resilience.
It is somewhat chilly and very wet in North Alabama. I am going to try to talk DH into veggin on Australian TV shows today.
Vicky
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