TRIPLE POSITIVE GROUP
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1982M - I had a skin and nipple sparing bi-lateral mastectomy in 2010, with an almost 3cm tumor, so not low risk. I had surgery first, then chemo as was the much more common practice at that time since Perjeta - which brought the advent of neoadjuvent chemo for tumors over 2cm to recommended order - was not yet used for early stage patients. My natural breasts were in the large B/small C range with no ptosis, and my plastic surgeon indicated at the time that you definitely needed to be a candidate for this type of surgery. Have you had a plastic surgery consult at this point? My understanding is that for nipple sparing to be used you generally need to be on the smaller breasted side to allow the nipple to be in the right place on the breast when the reconstruction is complete. There are some plastic surgeons that remove, or move, the nipple but those surgeons are potentially a little harder to find. Most make an incision in the IMF, place an expander or go direct to implant, and the nipple is close to the original position it was in prior to surgery. If you are larger breasted and wanting to go smaller the nipple will not end up on the front of the breast unless it is moved. Are you planning to reduce the other side?
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Hi SpecialK,
It would have to be a two step procedure for me- so the breast surgeon would and the plastic surgeon would need to reduce my breast bilaterally to a large B/Small C. Then proceed in several weeks to skin/nipple sparing mastectomy. It's usually used for prophylactic mastectomy. They do the reduction and then wait a few week
I really feel like no one gave me many options so I'm planning my own care and then have to present my plan and see if it flies.
I have not seen a plastics Surgeon. I won't get to see one until Nov/Dec.
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1982M - There are a number of members on this site with breast cancer who have had skin/nipple sparing surgeries, or do you mean the particular order you are considering, or do you mean in your location?
I was initially offered a lumpectomy - that is another thing that made me a candidate for this surgery - my tumor was well away from the nipple. That surgery would have been a disaster for me - I had a bunch of DCIS with cancerization of the lobules in addition to the IDC in the right breast, and a bunch of ALH and ADH in the left breast. Unbeknownst to anyone - even after mammo (which detected nothing), ultrasound which only saw the IDC, and MRI - I had positive nodes that met the size threshold and should have been seen prior to any surgery. I do not image well, and that is what made me opt for BMX over lumpectomy. In addition to having ALND surgery 5 weeks after my BMX, I have had a number of reconstruction issues that made me realize that if I had it to do over again, personally I would have opted for traditional mastectomy incisions, no nipple sparing, and 3D tattoos despite my initial result being beautiful. I do not have nipples now because of the complications I experienced. It is also important to note that almost everyone has no feeling in the nipple after this surgery - it becomes a decoration, and some experience either extreme flattening after the NAC is cored out, or the opposite and they always have to wear a bra. If you have a natural nipple and a relocated one they may not have symmetry or look alike. I am definitely not saying that SS/NS surgery is wrong for everyone, or anyone - and certainly the vast majority do not experience the complications I did - but I thought I should be 100% forthcoming with you. There are members, and people I know locally, who had a great result and look amazing. Unfortunately, this just ended up being the wrong surgery in hindsight for me due to a perfect storm of exceedingly thorough mastectomy, thin pectoral muscles, and thin skin.
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really my first choice would be oncoplastic breast reduction. The only reason I would seek a skin/nipple sparing is bc I want to combine the second lumpectomy with a oncoplastic breast reduction to decrease the amounts of surgery. There's a couple ways I've read about that they can do it, but pathology takes along time here (3-4 weeks).
One way would be a second lumpectomy, and wait for results of path. If results are clear (find out after 3-4 weeks) get the oncoplastic breast reduction. Wait several weeks and do radiation. If they aren't clear- go to masectomy and reconstruction.
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Hi Ladies: I am writing for a friend of mine who is triple positive. She started Herceptin injections every 3 weeks on her leg and it is very painful for her. She also develops a huge bruises on the injection site. Do you have any recommendations on what she can use to make this injection less painful?
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Lilly,
Many of us received Herceptin as an infusion, not an injection. So, many of us will have no useful advice. Best wishes to your friend!
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sorry, mine was an infusion.
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Is there any immunotheray for triple positive that is given as injection on the thighs? I may not remember the name of this injection but it is give under the skin for 10 min.
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i received my last few Herceptins as an injection. It’s a drug called Hylecta. The injection was about 3 minutes but it might feel like 10! It really does hurt. There is a material bound to the Herceptin that opens up your tissues to receive the drug and it feels like a really long bee sting while you get the injection. My nurses are experimented with using smaller needles and with where they did the injection-I think they learned that the side of thigh hurt less than the top. Good luck to your friend!
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the injections are very new. I'm still receiving infusions here in Canada.
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Redkitty815, thank you so much! I will tell her about the side of the thigh since she had hers on top.
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Hi, did your neuropathy eventually get better? thank you!
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My neuropathy resolved very quickly after I finished Taxol.
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Well, marking tonight as the last night of my entire life that I will not have had chemo. Weird to think about. I think I'm most scared of some kind of anaphylactic reaction and that I won't recognize the sensations fast enough if it happens. I hate not knowing what to expect.
My close friend also went for her first screening mammogram a couple of weeks ago after her aunt was diagnosed with BC. She ended up being referred for a diagnostic and then a biopsy and is waiting on results. I am both happy that I'm able to return the support she's given me by answering her questions, and loathing the fact that I have the "expertise" to do so.
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Good luck today gamzu!
I found my first chemo the most difficult mentally and physically, but since then each of them seem to get easier! I just had round 5 of taxol and have had two rounds or Herceptin.
The thought of a transfusion reaction is scary, especially since your starting chemo and that all seems overwhelming too. Only 1% of people have an allergic reaction and 30% have what’s called a transfusion reaction- however, with the premeds it’s less! I was really nervous about it too the first couple of times- but so far nothing. The fast speed they run it now doesn’t bug me either so I’m happy.
The weekly taxol group had lots of info too if you pop in there!
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Hi all, I am finally posting after over a year since diagnosis. At first I could not even read anything about breast cancer, I even threw out the handbook the doctor gave me. It has been a very rough year, but made it through it all during COVID, with the help of my kids and family. I am feeling better physically (still have some neuropathy in feet), but psychologically I am having a hard time. I constantly think about cancer every day and it is hard to switch my dark thoughts "off".... I find myself combing through the internet, almost obsessively, trying to find some sort of "cure".
I was supposed to get a mammogram in March 2020 but it was cancelled due to COVID. The nurse asked me if I wanted to reschedule in 6 months later, but I just had a gut feeling that I needed to ask for the next available slot when they were starting back up (in early May). I had no family history of breast cancer, so I was not concerned at the time. When I went for my mammogram on May 12, I got called back but thought nothing of it. When I found out it was breast cancer, aggressive, triple positive, my life changed forever. I was able to get the double mastectomy by June 2nd, but I keep wondering what if I could have had the mammogram done when I was supposed to in March? Would it have been DCIS and no chemo necessary? And maybe I could have been "cured"? It is a thought that I constantly struggle with. Thank you for help.
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Taxol #1 in the books. It was mostly long, boring, and straightforward except for the waves of burning and cramping in my arm that started as soon as the Taxol infusion went in, followed pretty quickly by a line of red splotches and bumps traveling up my arm along the general vein line.
Things you don't want to hear during your first session from an oncology nurse: "Hmm, I don't like the look of that. And it's already spread all the way up there?" And then the other nurse comes over for a look and goes, "Oh, wow." I did not have any other symptoms, no itching, no distress. She stopped the infusion and put an IV in my other arm to see if that vein would handle it better and the exact same thing happened. But then the other side began to fade and they decided to put in an order for a port placement but to keep going with this infusion with close monitoring unless it got worse. I was able to complete the Taxol successfully at the regular rate but the nurses said it was a mild hypersensitivity reaction and that my veins are too small and don't like the Taxol, so a port should be put in both for my convenience and because the veins won't last 12 weeks otherwise. I'm extremely fair-skinned so even the mildest reactions are very obvious to see.
It's so hard to figure out what's normal. My whole hand and forearm with the IV felt really cold and were noticeably chilled compared to my other arm all morning and I asked to make sure there wasn't IV infiltration or extravasion or whatever and was told it was normal. So when the Taxol infusion was pretty uncomfortable I figured that was normal too, and I wasn't even sure about the spreading blotches. I'm used to my own extremely pale skin and blotches routinely appear and disappear for no apparent reason. I got a rash all over my torso with the second and third Moderna doses and it was a nothingburger. But I've been given clear instructions to watch for any further developing rashes and call immediately if they occur, so I'll follow orders.
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Dear Bobina123,
Welcome to the BCO community. We are so glad that you reached out to our members for support and helpful information. We are sure that others will come along to respond to you and offer their tips on how to manage obsessive and troubling thoughts. Keep us posted on how we can be a help to you in finding your way around the boards. You have come to the right place.
The Mods
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Bobina123, so sorry you are feeling this way. I have two comments I hope will be helpful.
First, outcomes for people with your profile with the HER2+ subtype are very good! I’ve seen some researchers say that the overwhelming majority of early stage HER2+ patients who undergo the recommended treatment DO NOT have recurrence. So it would make perfect sense to look forward to just healing and moving on and to not look back and worry about things you cannot change - like postponed mammogram appts.
Second - can you talk to your oncologist about emotional support services that might be available to you? There is no shame in having anxiety, acknowledging it and seeking some relief from it. Whether that’s therapy, support groups, medication or what have you- find out what support is available and make good use of it!
Good luck and get busy living! Doing things you enjoy also might help push away those unwanted thoughts. Be kind to yourself
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Hi gamzu,
I had taxotere instead of taxol, but I got rashes from chemo all the time. Chemo definitely sucks but it's not as bad as the movies make it out to be. In a few months, you'll be walking out the door of your cancer center after your last infusion and you'll discover the joy of being done with chemo. I don't know about everyone else here, but that was one of the happiest days of my life.
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Olma61, thank you SO much for your good advice...means a lot.
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Hi Bobina123 - sorry you're feeling stressed. Getting a diagnosis is definitely a big stressor. As Olma61 suggested, see what resources your oncology center or hospital has available, whether it's one-on-one sessions or cancer support groups. I've found both can be very helpful. Your primary care doctor may also have recommendations.
Be cautious with internet information about breast cancer. Some sitesprey on cancer patients looking for cures. This site and reputable sites like Mayo, Johns Hopkins, or Cleveland clinic have great resources. Or reach out to your oncologist for info.
Have you seen a neurologist for treatment of your neuropathy? I’ve been working with a neurologist (for medication), getting acupuncture and walking 2 miles every day. It’s really helped to reduce my neuropathy pain.
There's also a thread for sharing positive survivor stories Breast Cancer Topic: Looking for Her2 Positive survivor stories. Check it out.
Take care.
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Gamzu, I'm so sorry about your friend - not the expertise I wish any of us had - , and sorry it was rough today, but am really glad you're getting a port and being monitored. I can't say as I like mine, but I am really grateful for it, given the number of blood draws and infusions we're all having to deal with over the next year. I really hope it makes things more comfortable and less rashy for you. My infusion nurses told me the first taxol is usually the worst in terms of reactions, and I hope you don't have any more for the rest of them. Either taxol or herceptin gives me a rash, but it's mainly on my face and chest, and has gotten worse over time (# 8 was done on Wed). I kind of look like I have measles most of the week, and I cannot wait for that to go away.
I know a lot of people say to make sure you drink enough water, and I'm going to join anyone saying that: make sure you drink enough water, or tea or some liquid that is palatable, especially this weekend. I wish I could bring you some soup. Hang in there.
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Bobina - I'm sorry you didn't find us sooner as we might have been able to help you deal with some of your anxiety. Looking at your diagnosis, I'm guessing that if anything, a mammogram much earlier wouldn't have found your tumor so you would have been later, not sooner, at getting a diagnoses. Regardless of the size of your tumor, everyone who is TP gets chemo. Your tumor was small and prognosis should be very good. Don't look back - you can't change it. Just look forward.
Gamzu - I have never been sorry to have had a port. Not sorry to have it out either but with Herceptin it was the right choice for me. They can do your blood draws from your port too.
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Side effects from #1 so far not bad but I am freaking out. I just looked at the bloodwork results posted in my oncology portal and my liver enzymes are high. This was the pre-chemo blood draw. No one has reached out to me about this and I'm reading that lots of things can cause this transiently, particularly drugs, and I was on a lot of various things for my egg retrieval right before chemo started that could be culprits, but I'm very worried.
They're not just a little bit high. ALT and AST are both more than 4x the highest end of the normal range. Alk Phos is also somewhat high but at least within shouting distance of the reference range. I looked at the bloodwork my PCP did back in May and everything was normal. ALT has jumped from 10 to 229, and AST has gone from 15 to 160.
I sent a message to my oncologist and I'm pretty sure the answer is going to be to just see what the next bloodwork says, but has anyone had this and it turn out to be nothing? Obviously my mind is going straight to mets. The SNLB was negative so we didn't look but I know from reading on here that isn't always foolproof.
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gamzu710 - mine went up above the normal range - x2 not x4, so my PCP ordered a hepatitis panel and an abdominal ultrasound. Both were normal. The LFTs went back down.
If it's high two or three tests in a row, give a call your PCP about it if your oncologist doesn't do anything.
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Thank you all for your advice... I really appreciate it. Grateful to have this support group....
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My ALT and AST significantly increased after my first round and I had to have a reduced dose of docetaxol for the next four rounds. My liver numbers are great now 5 months post chemo.
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Got an initial response from the NP that elevated liver enzymes are normal on Taxol, which made me scream in frustration because my entire concern is that my enzymes are way high BEFORE Taxol even started. It was like they put me into a "Taxol patient" box without looking at when the labs were actually drawn. But I replied back pointing that out, and the NP called and discussed it with me.
The hypothesis right now is that all the medication for the egg freezing may have mildly inflamed my liver and that we should watch and wait and it will probably normalize. They don't want me to get concerned about underlying pathologies right now. The NP said I have been through a lot in the last month even without chemo. Which is true.
So, I'm going to try to take a deep breath. It has crossed my mind that if my numbers were that high before the first dose of Taxol, how bad are they going to be next time, but one step at a time, I guess. But I've basically stopped taking all OTC meds and supplements because I don't know what might be contributing, and I'll hope for the best pain-wise with the port placement on Wednesday because there is no way I'm taking anything with Tylenol in it right now if my liver is already mildly upset.
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It's been a very long time since I have been on this site, a very long time. I recently changed over to Exemestane last week after being on Letrazole for almost 4 years and I'm having terrible issues with sleep now. I am hoping that someone can give me some tips on what they did to get some rest, maybe the magic time that worked for them to take this med. I've tried it right before I dropped in bed, I've tried it a half hour before bed. I am tired! When I do finally fall off to sleep, I wake up over and over; I do fall right back to sleep though, thankfully. I work and was afraid how it may affect me if I took it during the day. Anyone?
cross posted.
Thanks!
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