TRIPLE POSITIVE GROUP
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hongh - I chose bi-lateral mastectomy even though I was initially considered a lumpectomy candidate. I had surgery first as Perjeta had not yet been approved for early stagers and neoadjuvent chemo was not the norm. I had a 2.6 cm mass far to the outside, midline between the two outer quadrants, and I felt that I would not have a good cosmetic result with lumpectomy - too much tumor and not enough breast. I elected bi-lateral to take advantage of skin and nipple sparing surgery and for symmetry, and most importantly because mammography failed to detect my very palpable tumor. I figured that if my body could make cancer in one breast it could make it in the other one, and I have a long history of poor imaging so I didn't trust that I could be accurately surveiled going forward. It turned out I had more extensive DCIS than originally thought that had moved from ducts to lobules along with my IDC, and it didn't show on mammo. My "prophy" breast contained undiscovered atypical ductal hyperplasia and atypical lobular hyperplasia, so it turned out to be a good idea even though I had a number of surgical complications. I would make the same decision again today.
I just wanted to say a word about clinical trials and current availability of trialed drugs. Some of these drugs are already FDA approved for metastatic use, like Kadcyla, so using them for an early stager amounts to essentially an "off-label" use and some oncologists will do it - particularly in a case with complications. That said, the majority of oncologists will not go to this type of administration without proven intolerance because there is not yet current approval for doing it. The ATEMPT trial is currently closed to recruitment, and while Phase II may report out next year, Phase III has not yet happened. Phase III trials are usually larger so recruitment can take some time. I know it is frustrating that treatments, particularly those that seem to be more well tolerated or potentially provide better outcomes, may not be available to all of us at the time of diagnosis.
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Karunna,
I am part of the ATEMPT trial. It is ongoing but not accepting any more patients.
Check to see if there are other trials available for kadcyla
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hongh
See if any of these BCO references will help:
At this link: https://community.breastcancer.org/forum/91/topics/851551?page=1#post_4874453
In this topic: Lumpectomy or Mastectomy - How did you decide? Forum: Surgery - Before, During, and After
Look for: Jan 2, 2017 10:51AM ruthbru wrote.
Then scroll down and read the update: Regarding Beesie's post copied over by Ruthbru above, please note that Beesie recently issued an update on Sep 15, 2016 that can be found here:
Lumpectomy vs. Mastectomy (Invasive disease):
https://community.breastcancer.org/forum/82/topics/848049?page=1#post_4802494
Vicky
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It turns out that I did have a pCR with the exception of some DCIS.
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WC3,
I had the same; I had a PCR with a tiny pocket of DCIS. Congrats!
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Hello all! First time poster and relatively new to having a cancer diagnosis and I have a lot Of information I'm just looking for any and all input on!
First off a little background, I'm a 27y.o female that was diagnosed in my right breast with stage 1, grade 3, IDC, strongly ER+, PR+, Her2 +. Diagnosed beginning of November.
I also have no genetic component to this disease, tested for 34 different gene variants and had none.
I just had a lumpectomy w/ sentinel lymph node biopsy last week (per oncologists and surgeons I saw, everyone wanted surgery first and then chemo) and final pathology stayed as Stage 1, 1.5cm tumor, no lymph involvement.
SO here are some issues/questions I have at this point. I've seen multiple oncologists and there's a split between the regimens they want to do.
Some oncologists have said to do Taxol + Herceptin weekly for 12 weeks and continue on w/ Herceptin for a year. Other oncologists say to do 6 cycles every three weeks of TCH and try to include P as well (taxotere, carboplstin, herceptin, perjerta) and continue on with the targeted for a year. Both want Tamoxifen for 5 years too.
This split in chemo regimens is really where I need some input. I've read a bunch of studies which makes it even more difficult to discern which regimen would be the best for long term success. Just wanted to see what everyone's experiences were or what information anyone had. I'm not afraid of chemo im afraid of cancer returning and I want to do what's best.
Also, my gut feeling is that a bilateral mastectomy is the best thing long term but I've heard mixed opinions. I am young,have extremely dense breasts with fibrocystic changes and fibroadenomas bilaterally. Just looking for input! Thank you and sorry about the long post!
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WC3, ElaineTherese: Congrats for the pCR! yes, I did some check and it says if the residual is only DCIS and nodes are clean, it is staged as ypTisN0M0 and is a true pCR.
We were sort of disappointed about my wife's "near-pCR" as it still had a residual 4 mm IDC, but it turned out the residual is "infiltrating" DC (rather than "invasive" DC) and it changed to grade 1, too. So, the BS said we "should be delighted with the report" as "The chemo killed the most aggressive cells and just left behind the most indolent cells.".
Maybe not perfect but acceptable?
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Netiseret—you sound similar to me except that you are pre-menopausal. Primarily because of spending so much time on this site, I knew before I met with my MO what would be recommended for me. The Taxol/Herceptin seems to be the standard for my tumor size, stage, and characteristics. Maybe someone else can address why an MO would recommend TCH for you?
In the meantime you can update your profile and make it public if you want people to be able to see your dx and eventual tx.
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netiseret I did taxol and herceptin. It was very manageable. I also had a lumpectomy first and then chemo. I'm 3 years out now and doing great. I also had no genetic markers and no lymph node involvement. You may also want to join the young with cancer forum. I had completed my family when diagnosed, but you may want to figure out fertility wise what you want to do, and the ladies on that forum have great advice in that regard. Feel free to PM me at any time with questions!
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netiseret,
Increasingly, doctors are recommending the Taxol/Herceptin regimen for smaller HER2+ tumors. Because of your youth, however, some doctors might want to go TCHP, which is a harsher regimen. I think either regimen is fine. I personally got a lumpectomy, but many in your situation have gotten bilateral mastectomies. In my case, I didn't want to go through reconstruction because I have children who are high-maintenance and I needed to be on my feet as soon as possible.
I agree with Tresjoli; you should check out the young with cancer board, especially if you want to preserve your fertility. ((Hugs))
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Netiseret:
TCHP is the more aggressive therapy. I would want the perjeta definately. It's side effects are usually minimal and I have no side effects from it.
The carboplatin is a heavy duty chemo drug and I had bone marrow supression from that. It made my platelets drop (easy bruising, some petechiae and slow clotting) for part of my chemo cycle, and made me anemic, but it was manageable.
My T was taxotere, which used to be touted as more effective than taxol but apparently that isn't the case and they may be about the same as far as effectiveness. My facility uses taxotere out of convenience because the frequency syncs perfectly with the herceptin and perjeta but taxotere might be harsher for some as far as side effects go and in a very small number of people can cause permanent hair loss. This is why I did cold capping. But taxol weekly and taxotere every three weeks are otherwise interchangeable as far as I know.
In your situation, personally I would have gone with the more aggressive regimen for chemo because if I turned up with metastasis years down the road, I would rather look back and know I did everything I could do than look back and feel I took a gamble by being conservative in my treatment and lost.
Do look in to fertility preservation though.
ElaineTheresa, LilyCh:
Thanks you. It was a surprise because it was still showing on the MRI after 4 infusions.
The jury is still out on my axillary lymph nodes, one of which I had discordant US results in and was not removed or biopsied, in part because the 2nd US on a different machine showed it looked normal and the radiologist felt that the screen on the machine at the first place just had to be contrast corrected. But I had pain in it during chemo. Hopefully if any cancer was there, that pain was the chemo killing it, and if it killed all of the primary tumor, hopefully it killed all of any lymph node mets.
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Thank you so much for the responses ingerp, tresjoli2, elainethere, and WC3. There’s so much information and options to consider I actually just started the stimulation process to save eggs this past week !
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Netiseret - I'm always sad to see anyone here but especially those of you who are so young. Sounds as if you are really doing your homework. It's hard when we are in shock about the diagnosis and trying to make so many decisions. I agree with ElaineThere. Probably the different treatment recommendations are related to your age. Like Inger, I just did Taxol/herceptin and now AI's. but I am almost old enough to be your grandmother. Keep asking questions until you are comfortable with a plan. Then my advice is to not look back. It is what it is. Even with the most aggressive treatment, some of us will experience a reoccurrence - and the science isn't perfect enough yet to tell us which ones of us will. Definitely check out the "young with cancer" thread. I suspect there is one for people who are making the mastectomy/ lumpectomy decisions although it also comes up here. Good luck. Come back often. Taco
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netiseret, we are sorry that you have to be here. No post is too long and ask as many questions as you can. In making your decisions, a journal can be helpful along with a list of pros and cons that you work over with a trusted family member or friend. There is an enormous amount of information to absorb
I had dense breasts as well so I understand why you are considering a BMX. Reconstruction is another big topic. Perhaps you could investigate that carefully while getting through chemo.
Protocols are constantly changing which means that the long term statistics for outcomes that you want to see may not be available. TCHP was the only option presented to me so that made the decision easy. Good luck with your decision. It’s your body and you want to be comfortable with your decision. We are here to listen.
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Welcome to the club that you never wanted to join. Those who have responded before me offer wise words and wisdom.
My Primary Care sent me this quote last week: "misfortune born nobly is good fortune." In time I hope you can find a "fortune" to what you are experiencing at 27 years.
I am unsure as to what I do if I had my cancers at 27 as opposed to 63 when I was diagnosed. I offer these references that I have posted before:
At this link: https://community.breastcancer.org/forum/91/topics/851551?page=1#post_4874453
In this topic: Lumpectomy or Mastectomy - How did you decide? Forum: Surgery - Before, During, and After. Look for: Jan 2, 2017 10:51AM ruthbru wrote.
Then scroll down and read the update:
Regarding Beesie's post copied over by Ruthbru above, please note that Beesie recently issued an update on Sep 15, 2016 that can be found here:
Lumpectomy vs. Mastectomy (Invasive disease): https://community.breastcancer.org/forum/82/topics/848049?page=1#post_4802494
Please study these. I would also encourage you to go to Whippetmom's forum in Breast Implants.
A BMX is not reversible (you knew that, I know). You will most likely have your implants replaced at some date. It is critical that your Plastic Surgeon be not only a great MD but also an artist an expert with Breast Cancer Women. Search carefully for this person. Do not settle!
I think the BMX decision comes down to this: Can I live in peace and in the life I want with these breasts (either the ones you were born with or the ones you purchased)? I could not live in peace and in the life I wanted with my original breasts. I am very happy with my reconstruction. And that is me, not you. Only you can make this decision.
In this forum, we will answer your questions and never question your decision. I remain amazed and grateful to the Triple Positive Women in this forum. Dang! If we could work together in a business, we'd solve every world problem!
As for your chemo, I took everything my Oncologist gave me and asked for more!
God's blessings to you as you walk this journey.
Love, Vicky
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Netiset, I am so sorry to see you here. You are so young, it breaks my heart.... do come and join us in the thread for women under 40. Many experiences there with fertility preservation and the like issues of young patients.
I am quiet young for this cancer crap too, but at least lucky in that I already have little ones. My genetic testing was negative for over 30 onco-genes, too. The tumor board sent me to lumpectomy first, the same as you. My tumor was measured at 15mm from mammogram and ultrasound, but the pathology said 21mm which changed the stage for me.
I am not able to give any advice concerning chemo regimens... My MO proposed AC-TH which I saw many with the same tumour as myself are getting. So I agreed and got the dose dense shedule, since I am otherwise healthy. My advice maybe would be just try and find people with similar pathological results and ask about their regimes and experiences. You can than discuss what you learn from them with your MO.
Oh, and what Suburbs mentioned is a great advice and I can't agree more - get a notebook of some sort. Dedicate it just to this whole crap diagnosis. You can take notes at each appointment, note questions to ask at the next appointment, note advice from friends or from people here (like shopping list for chemo, rads, etc.)... you will see the whole timeline of your dx. I remember Suburbs telling me this when I was new here. My notebook is now very full and it has become very usefull. I sometimes even help my MO with searching for results because I am able to provide any date of any checkup very quickly. Now you may think you will remember everything, but trust me - you won't. This all will become just a blur very quickly...
I hope you will find a fitting regime you will be comfortable with. Keep us posted here.... The ladies here are very knowledgeable and caring and kind... I can't express how much this TP-group has helped me.
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Netiseret, I'm 26 with the same diagnosis. I'm sorry you're here, but I'm glad you found this group. You'll find good advice and support here.
I went the TCHP route even though it was the more aggressive option because of my age. Our younger bodies are able to withstand more, heal quicker, and fight harder with aggressive treatment. Although the regimen was no walk in the park, it actually was tolerable all things considered. I opted for neo-adjuvant treatment to shrink the tumor as much as possible prior to surgery because I knew I would choose lumpectomy and wanted as little cosmetic effect as possible. In weighing out the options, my surgeon informed me that overall survival between women who choose BMX or lumpectomy is the same; the rate of reoccurrence is a very small percentage between the two. You'll find this information in a lot of articles, as well as repeated in many of the boards here. Ultimately, it comes down to knowing what decision will bring you more peace when all is said and done.
Good luck with everything. Please don't hesitate to PM me if you need someone to talk to, or have any questions about the treatment journey. It could be difficult finding someone as young as yourself going through this.
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if I were you I'd chose the Taxol and Herceptin route. I had a larger tumor so I had the TCHP route and it was awful. I lost 30 lbs and now have permanrnt neuropathy and a 30 % hearing loss, and I still had cancer present when had surgery.
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My facility does not give A and H together due to the risk of heart issues with that combination.
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LTWJ:
I lost about 30lbs with TCHP and have some neuropathy as well, though mainly numbness, not pain. I have it in my teeth as well, believe it or not.
I don't think I lost any of my hearing but I did notice some distortion.
If I were given a choice between taxotere every three weeks and weekly taxol I might have chosen the weekly taxol and skipped the cold capping but I hadn't heard about the taxol until after I started, had already paid for the first cold capping, didn't want that money to go to waste and could not afford to continue cold capping if I did weekly taxol. Also I hate the dexamethasone side effects so I wouldn't want to have to take it weekly.
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Hi all, been a while since I have posted. I have a question that I hope someone can give me some insight on. I started my 6 treatments of TCHP in late August and have now completed my 5th cycle, last infusion will be mid-December.
I had an ultrasound after #4, they were unable to locate the smaller tumor and determined the larger tumor decreased by about 65%. Of course I don't know what is happening with the DCIS as US doesn't detect these cells.
Im happy that there has been progress but still concerned that once all this is over I won't have achieved a PCR. I have surgery tentatively scheduled for 6 weeks after my last treatment and read it can take a week or more to get your path results . My question is, if I don't achieve a pathological complete response and there is still cancer cells remaining, doesn't that mean that during the 6+ weeks of waiting for surgery and results the cancer cells could continue to grow and migrate?
I see most people get surgery within 4 weeks of treatment, should I push for a faster surgery date?
Any thoughts would be much appreciated.
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TCHP all together sounds really rough. H & P are miracle drugs though, just keep the imodium handy!
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MACTAZ: I had the exact same concern. I had a lumpectomy 5 1/2 weeks PFC. My MO reminded me that I was still being treated (HP only; I assume yours will continue as well). Also, remember that you're really only going a couple weeks without the TCHP you've been getting....since we only got that every 3 weeks. I had PCR in the lymph nodes and although there was still cancer in the breast, I got clear margins and was assured that I'm cancer free. I wish for great results for you as well! I'm now almost 6 weeks post-surgery, all healed up, feel great and about to start radiation. Soooo can't wait for that phase to be over. I'm totally ready to have my treatment behind me except for that pill for the next 10? years.
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thanks Kat22, that does make me feel better.
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For those of you who have finished chemo and surgery, what, if any, scans do you have, and what kind?
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I don’t get any scans unless I ask for them. My dr goes off the tumor marker blood test and that’s it. Every 3 months
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I’ll just be getting a 3D mammo every six months. I think that’s pretty typical.
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LTWJ: is that Circulating Tumor Cell (CTC) test?
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LilyCh, it's the CA 125 test that he uses.
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My last radiation treatment is tomorrow! I'm so freaking relieved to be done. My husband flew in to drive back to Phoenix with me. We're planning to stop in Marfa, Carlsbad Caverns, and White Sands, weather permitting. I am meeting with my MO next week to see what else he has planned for me.
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