TRIPLE POSITIVE GROUP
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Shelabela, yes. I'm doing 4 more rounds of the 21 day cycle of getting the Taxol, Herceptin, and Perjeta. (Although I'll be on the Herceptin for a year.)Along with 8 more weekly rounds of the Taxol by itself. They switched my regimen because I had an allergic reaction to the carboplatin, and taxotere. It was awful. My ONCO said if she kept me on that same regimen that I would become septic. It was bad. This is more tolerable just really tired. I as well have used the bathroom more, but it's ok with me because the other combo made me constipated.
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Hi all. It just dawned on me that with neoadjuvant treatment and mostly sketchy staging before surgery, the path forward when you are doing TCHP is very murky. It feels like a giant clinical trial. A PCR is less likely when ER/PR +. The anxiety of the radiation, surgery, reconstruction, another 9 months of Herceptin and the 10 years of hormonal therapy steps are wearing me down.
Now that the hurry up and wait of biopsies, diagnosis, and initial treatment plan are behind me, I am second guessing everything. I am wondering if surgery first would not have been better because I think by the time surgery comes around, I am going to be spent from the first 6 rounds. I can't be making big decisions about reconstruction at that point. The tissue expanders sound horrible. The fat grafting sounds more invasive and risky. Pain, loss of mobility, risk of infection, shelf life of implants are making the surgery decisions, yes multiple surgery decisions, difficult to consider.
The first surgery is already a roll of the dice since you go in not knowing your node status or radiation requirements. The surgery plan is just a plan. You could wake up in a completely different situation. This uncertainty creates an anxiety level that yoga, meditation, adivan or the tread mill are notgoing to mitigate.
The neoadjuvant treatment model of TCHP for early stage adds complexity to this process. And when the option of a lumpectomy gets pulled off the table, then the fun really starts. I guess the only upside is that I found that out earlier, rather than upon waking up from surgery.
Yep, we are triple positive. We are different. That is for sure. Thanks for listening.
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Suburbs,
Triple positive cancer is surely a marathon, not a sprint. But, I'm not sure what you mean by saying that lumpectomy is no longer a possibility. After five months of neoadjuvant treatment, my PET scan and MRI showed no active cancer. At that point, I felt comfortable with a lumpectomy, and didn't have to make any decisions about reconstruction because I was opting out of it. (I can always do mastectomy later, but once my breast is gone, it's gone.)
Staging can be sketchy when you take the neoadjuvant route. But, because MO is a scanner, I know that chemo worked for me. We have "before" and "after" pictures, and my pathology report confirmed that I had no active cancer after chemo. If I'd taken the adjuvant route, I never would have known how effective chemo was. And yes, I was 95% ER+/PR+, and I had PCR.
Best wishes to you! Yes, it IS a long slog, something our non-HER2+ sisters might not experience. Just keep on keepin' on. We're with you.
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I did the adjunctive route, lumpectomy first, but I had close margins and knew going into chemo that I would need a second surgery after the first six rounds were finished. I was happy to have the additional time to really consider my options.
After much consideration and multiples meetings with 2 different PS, I did bmx with immediate DIEP recon. Although surgery after chemo was no picnic, I think it was better than having it the other way around. After surgery, I could just lay in bed and recover from both the surgery and the chemo. It would have been grueling to have to do the chemo while still recovering from such an extensive surgery.
Good luck to you throughout the rest of your treatment. I'm three years out. It does get better!
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shelabela...if you go to a dermatologist they can prescribe retin a for the acne. Insurance doesn't usually cover it for people out of their teens (women use it for wrinkles). But for this situation, your dermatologist just has to write a note.to.the insurance company. Retin a works fantastic.on the pimples...
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silly question here.do you still use shampoo for your scalp after all the hair has fallen/shaved? anything you used for scalp care?thanks
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My hairdresser encouraged me to keep my scalp from drying out. I think I may have used some conditioner or something.
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thanks elaine
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thank you tresjoli
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Suburbs - I'm with you on this. After 6 months of treatment and no visible cancer on my recent MRI, I was expecting a lumpectomy. Surgeon told me mastectomy was the safest option because my tumors were too far apart so lumpectomy was never an option. I don't quite understand the benefit of HP before surgery as I thought the objective was to shrink the tumor so lumpectomy was possible. All this is very confusing and really dependent on the MO's treatment strategy. Don't get me wrong, I am very grateful for the opportunity to be participating in a clinical trial that offers a chemo alternative. I am struggling with the decision to do a single vs double mastectomy. The fear of recurrence is what makes the decision tough especially not knowing node status. Murky is a good word to describe how things appear prior to surgery. I do appreciate the input from all the ladies here who had surgery first; it certainly is helpful to have different views to ponder.
Wishing you the best, hang tough!
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deni1661, I prepared a pro and con list for single double with and without and have been pouring through the going flat threads to get some perspective. I plan to finish this list by the weekend then, put the subject completely to bed and focus on eating organic vegetables. You are just a bit further along so it really helps to get your feedback. Thanks for sharing and good luck making the decision. Radiation, my next full time medical school course, is waiting.
I can honestly say though, I think the decision is made. Being housebound for weeks to reconstruct is not something I could buy into. I have no interest in prolonging this adventure. I am so grateful that those who have and haven't done multiple surgeries shared their experiences. I feel so much better when I have more information. The candor and generosity of spirit are inspiring
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How do you take L- glutamine during chemo? 10 g three times a day all throughout? have not discussed this with my MO and i will when i see her next.thanks
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kae - that is what I did for the most part, although sometimes I tapered off in the last week before the next infusion (particularly during the first 3 infusions when the tingling resolved). My neuropathy did not resolve for the remaining infusions so I continued throughout, and after chemo was done. My neuropathy dissipated and was gone by about 90 days PFC.
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Hi ElaineThere, because of the DCIS/IDC diagnosis and the distance between the two sites, my triple positive is multi-centric or multi-focal or multi-focused. The skin saving and sparing lumpectomy are not recommended in this situation. Add the node status unknown and the UMX becomes less desirable since radiation would make an implant delayed or possibly unsuccessful. So with a BMX, worst case scenario and I say this with formidable positivity since no surgery is without risk, one would be left with symmetry. The go or no go facet of radiation treatment is the wild card that I did not fully grasp. Of course, when your mind is a bit wild from the steroids to fight back the perjeta rash, I know I sound a bit crazy. And clearly, others here on these boards have much larger issues they are fighting, so I feel a bit selfish and thank everyone for their indulgence. It must be apparent that I have never been to Las Vegas. : )
On the subject of PCR and NED, the goal of neoadjuvant TCHP therapy, the two hematomas from my biopsies are still huge and exponentially greater in size than the lump that was never felt. I think I have heard these hematomas can linger for months and may even still be there at the time of surgery. Has anyone else experienced this same condition
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specialK,thanks! how much did you taper your l glutamine intake to at the week prior to chemo? Suburbs, when my ultrasound was done my tumor size was 2.5 cm. MRI 2 weeks later revealed my size to be 3 cm but my radiologist ( whom i like,who told me right away that it was cancer and even the left breast has cancer also and she tuned out to be right) wrote on her Mri report ( she did both Ultrasound and MRI) that for staging she advises that we go by ultrasound done prior to biopsy for the size since she thinks that the discrepancy in size is caused by biopsy hematoma. my breasts were really bruised from the biopsy and i bruise easily. in fact my port site is still bruised up to now
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Ah, suburbs -- did not realize that you were multi-focal. I had a giant hematoma after my lumpectomy, and my surgeon eventually drained it. My radiation oncologist refused to begin radiation until it was drained. I suppose you could ask for yours to be drained as well. Some BC patients have relatively easy reconstruction processes, but yes, some end up with multiple procedures. I have to say that I never knew that reconstruction was so involved until I started reading on this site. However, it's important to note that the women with complications are over represented here. After all, if you have an easy go of it, you don't need to post about it. Best wishes!
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I am in the same murky water boat, I have to have a mastectomy on the left, multiple tumors in that small breast so nothing would be left. Lol. So I was told having both is an option, there are small "non" tumor spots on the right. Could these turn into cancer later is the question. I am leaning towards both. I have my appointment wth surgeon and reconstruction surgeon end of April. So I have awhile to think and learn
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My heart goes out to all of you on this board. It is hard to even express how much it goes out to each and everyone of you in words.
My lump I found turned out to be "fat". I am beyond relieved but it took almost a week for my doctor to call me back to let me know. He also kindly explained that the first time is the worst time for this type of recurrence fright. I hope he is right. My biggest problem during this ordeal, during and after has been one member of my family, my brother, the person I have always helped, loved and listen to. Pure anger. "I am his only problem". He is so full of hate it just broke me down completely even more than the scare of the lump and my own fear.I used my last strength to tell him off which made him even more angry. Why worry him about something that was not anything? His reaction and lack of empathy made me almost want to take my own life (I am not going to) but needed some strong medication to even be able to breath. His biggest problem is me apparently. I am a burden and it just kept going with etc. I understand he is having some serious issues of his own, but he does not want to adress them and continue to blame others, now everything is my fault. His reaction has just been such a chock I can´t for my life get over it. I will never get over it. I lost my brother. Did anyone else have this experience from a loved one? I just can not feel any love towards him anymore and that hurts more than this cancer at the moment, such a nightmare in itself. I am for sure all by myself. Me and my cats. To find the strength to even ask for help is hard to find after this revelation about the person I thought I could always trust and I thought loved me. He doesn´t.
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kae - I did not taper as in a planned thing, I just didn't keep track as well, and consequently there were days I had two doses instead of three and possibly a couple of days that I just had one. I was more diligent initially, but was a bit worn down through the chemo process as I had five surgeries in the 14 weeks preceding the start of chemo, then experienced a body-wide swelling event half-way through that triggered bi-lat lymphedema, and then had a UTI. I got a bit distracted, lol!
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Kattis, that truly sucks about your brother. I'm happy to hear your new lump was just fat! I was wondering about how you were doing.
I know something of what you are feeling with regard to your brother. Breast cancer is not the worst thing that's ever happened to me. My mother had three emotionally abusive husbands and did not stick up for me and my little sister. She was also the local leader of an obscure religious cult. When i was 16 the third husband threatened to kill me. I moved out and lived with my grandmother, then moved out on my own when i was 17. (Didn't speak to my mother for >20 years until the diagnosis, and then just to ask about family history.) My twenties truly sucked. Post-traumatic stress disorder, anxiety, depression, often dire financial stress. Good friendships and moments of glory for sure, but a very painful time in general. There is something particularly excruciating about being betrayed by someone who you thought was supposed to love you.
I don't have anything to say to help you feel better, but just know you are not alone in that experience. Time helps. Psychotherapy, too. I did lots. Be kind to yourself.
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specialK, i know what you mean, during my hard days post chemo, i also forgot ( or remembered but did not feel like taking it) to drink it.lol. yesterday, i felt pain in my fingertips so i took it and pain is gone this morning. will have to be more diligent. i will do the 10 grams 3 x a day and will discuss it with my MO. thanks!
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suburbs, I too like lots of info. I have a pro and con list as well and a long list of questions for my next surgery consult. My medical team is very patient and always provides me with multiple treatment options. Some days I get overwhelmed with all the info but am close to making a decision. The posts here have certainly helped. Thanks for your response, take care
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shelabela- thanks for sharing. Tough decision for you too. I think information is key to making a confident decision. My friend who is also triple positive opted for a single and gave permission if they found cancer in nodes, then to proceed with a double. I'm leaning toward that choice at the moment but need to discuss with surgeons. I'm finding there can be many options and the choice is very personal. I wish you the best with your decision, take care
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Hi Ladies, I had BC in the left breast and they seen some small calcifications in the right side. They wanted to tested the right side but I ask her if she would remove them both and my surgeon oncologist asked me if I would be upset if they removed the right breast and there was nothing in it. I said no I wouldnt be upset. So I had a bilateral mastectomy with reconstruction and I'm very happy I made that session and no regrets. I wish you piece with making the right decision for you.
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Deni 1661 and robin1234, thank you. I've got my list ready and will meet with the surgeon. All the feedback has been really helpful. I feel so much better having mapped out the options
Kattis894, I was thrilled to hear the news that you were not facing a recurrence. Please hang on to that glimmer of light.
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It's still very interesting to see that so many ladies opt for mastectomies. In reading Dr Google about studies, and speaking to 3 different BS in NY, they tend to lean towards breast conservation. They say it's an old fashioned thought about the mastectomies. They say it's not proven that it actually makes a difference in longetivity or metastasis. Of course, let's be cautious here, and I didn't think they meant it or neither am I thinking this is the same process across the board. Everyone has their stories.
My daughter was very young, and they really pushed us not to do it. I will never know if it did matter. She did have a very aggressive grade and Oncotype and the whole thing, age, and all from the get go. I do always wonder. Best of luck on such difficult decision.
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did you guys get PET/CT even if MRI showed no node involvement? or did you get it because MRI or ultrasound showed node involvement? my MRI showed no chest wall, no nipple, no node involvement.2 ultrasounds done also showed clear nodes. my BS and PS both think i don't need PET/CT plus they are sure that insurance will deny it based on my MRI. we did get an approval for CT scan of pelvis, abdomen and thorax because of a pelvic cyst that is benign ( endometriosis). results were clear. i still wonder abut it sometimes, it would have been great if i got one. i thought about paying for it buy it is very expensive (1400 usd). i wonder if insurance will approve it as a once a year thing after i have done my chemo and surgery to check for recurrence... thanks so much.
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Kae,
I got a PET scan after the ultrasound and MRI showed that one node was compromised. Also, the MRI suggested that my tumor might have had a satellite tumor, and that my lump was bigger than it appeared on my ultrasound. Yes, insurance companies are not too enthusiastic about paying for PET scans, so yours may very well refuse to pay for one.
One problem with PET scans are that they produce lots of false positives which can lead to unnecessary worry and more scans. Three PET scans showed something on my left femoral neck (hip). MO didn't THINK it was a met, but I nevertheless had to have a CT scan and an MRI. Neither of them showed anything going on with my hip, so MO considers it to be a false positive.
Since then, I have had no more PET scans to check for recurrence. I just go for mammograms every six months to check for a local recurrence.
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thanks as always Elaine..
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Hi This is my first time posting and would like some advice/input. I was diagnosed with idc in my right breast in August. I was told that I had a grade 3 tumor and was triple positive. After the mri showed some enlarged lymph nodes they opted to do a biopsy on one of the nodes. It was negative so I did not have the sentinel node biopsy that they originally scheduled. My oncologist had me do neoadjunct therapy. Fast forward I finished my 6 cycles of chemo (carboplatin,taxotere,herceptin and perjeta) in January. I'm 3 weeks post op from surgery. I had a lumpectomy with a reduction and 12 lymph nodes removed. Pathology came back NED. I saw my oncologist today for my first followup with him since my surgery. He was very happy with the results. I start radiation in 2 weeks and will stay on herceptin until October. I originally was told I would have hormonal therapy after I finished with the herceptin. Today my oncologist didn't feel that it would be necessary since I got such positive results after surgery and chemo. I'm not strongly er+/pr+. I also had a hysterectomy 3 years ago. My question is do most women take the hormones for the er/pr? Does the her2+ have anything do do with taking the hormone therapy. I know how thrilled I should be with my tests results but I'm terrified of recurrence. I want them to hit me with everything because I want to lessen my chances of having to go through this again. I know there are no guarantees. The Dr thinks they risks of taking the pills might not outweigh the benefits. So I guess I'd like anybody's opinion who have been through this. He told me if I felt that strongly he would put me on them. I'm afraid to make the wrong decision. Are there many side effects. Also did anyone have extreme itching on their arm from the herceptin? It's unbearable. I've tried everything and it doesn't help. I was just prescribed gabapentin to take. I hoping it helps I can't sleep at night it gets so bad. Thanks for listening to my long winded post.
dx 8/16 idc right 2.7cm grade 3 triple +
chemo-carboplatin,taxotere,herceptin and perjeta
surgery- lumpectomy 12 nodes removed
targeted therapy-(herceptin every 3 wks)
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