TRIPLE POSITIVE GROUP
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Hello to all you triple+s! I was dx Aug 8th 2018. Had a lumpectomy Aug 30th. Margins were clear and very favorable. Nothing in my lymph nodes. I am working with a naturopath Dr for improving my immune and over all health. Intermittent fasting is my new way of eating. Cut out sugars and almost all carbs. Some supplements too. Am I crazy for not doing conventional treatments? I am a newbie to the form so be patient with me please!!
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Iamloved:
I really couldn't say. There will always be people who's cancer truely was localized and contained to one area and for whom surgery did get it all but we don't have a reliable way to distinguish them from people who have micromets or for whom surgery did not get all of the cancer.
I do know though that triple positive breast cancer has a high local recurrence rate after lumpectomy, even when a "complete pathological response" was achieved with chemotherapy. I know normal ductile cells have 20 HER2 receptors while HER2 positive malignant ductile cells have about 2 million of them, and I know that none of the dietary changes I made...cutting out sugar and dairy and going back on the low glycemic diet of my 20s in the month between my dx and the start of chemo stopped my cancer from growing. In fact, it grew half a cm. It only stopped growing after the first chemo infusion.
In my case, I believe my cancer out paced my body's ability to contain it and I do not believe there were any life style or dietary changes I could have made to stop it by the time it was discovered.
I wish the best of luck to you though and hope your decisions turn out to be the right ones for you.
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Iamloved everyone has their own decision process. I’m a numbers gal so I always went by the probabilities (e.g., radiation was going to cut my recurrence probability in half, so it was easy for me to get on board with it. In the end you need to go with what you’re comfortable with, and then don’t question your decision.
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Iamloved,
You got surgery; that is a conventional treatment! For most breast cancer patients, surgery is the treatment that reduces the risk of metastases the most. What grade was your cancer? What % ER and what % PR? My cancer was grade 3, and my cancer cells were loaded with HER2 receptors. It was "growing like kudzu," my oncologist said. So, I went conventional.
That said, I agree with the others -- you have to choose for yourself.
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I was recently diagnosed with triple positive BC . Er+/pr+ and HER2+. I am 10 days after my first TCH chemo treatment. I am finally feeling pretty good minus a low grade headache, rash and extremely dry mouth. The first day or so following treatment was not too bad except I could not sleep due to steroids. I never had nausea, diabetes or constipation. My biggest complaint was bone and muscle pain which I do not think was totally due to the Neulasta as the pain started before my injection. I have 5 more chemo treatments and then surgery. If I choose lumpectomy then I have 15 radiation treatments. I am conflicted on bilateral mastectomy vs lumpectomy. I am 48 years old and do not want to be faced with this same decision in years to come. I don't want to put my family thru this again. But bilateral mastectomy seems like a drastic option. Any one else dealing with this difficult decision ? I am also waiting for genetics test results. If those results show BRCA gene, then my decision is made for me as I will have the masectomy.
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I'm doing chemo, targeted therapy and mastectomy. I did have my moments before I began treatment where I wondered if I could get away with a lumpectomy and rads as I was thinking about my poor happy healthy cells and what the chemo would do to them. My grandmother survived breast cancer twice with mastectomies and rads. I have no idea if either of her breast cancers were HER2 or triple positive but it was tempting to think that maybe I could avoid chemo like she did. But I know if I did more conservative than the standard treatment and didn't get it all and it spread (if it hasn't already), then I would never forgive myself, especially having relatives who have succumb to stage IV cancers. So in the end I was more comfortable going "D day" on it.
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Hi!
Whether or not you choose BMX or lumpectomy may depend on a number of factors. When I was diagnosed, I was working full time and coping with twins with autism who were going through puberty. I wanted a simple surgery and did not want to go through reconstruction (which can take multiple surgeries, depending on the circumstances). So, I chose a lumpectomy. (In fact, I went back to work part-time on the day after my lumpectomy.) By the way, getting a BMX in no way guarantees that you won't have a recurrence or metastatic breast cancer. It just lowers the risk slightly of getting a local recurrence. Good luck!
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Most of us have had to make the lumpectomy vs. mastectomy decision. I just didn’t see taking more tissue than necessary. As with other treatment decisions, you have to do what you’re comfortable with and then know that was the right decision for you
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In my case the BMX is due to a family history of bilateral breast cancer, and the fact that I have very dense breasts and am at risk for breast cancer being missed if it should occur in them again, as mine was the first time.
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Welcome. Everyone must find their own path.
No one will judge you here. Please be open that some on us selected other paths.
I have cut out sugars and carbs as well.
Vicky
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Elaine there...It was a grade 3. This is from the actual pathology report.
Progesterone Receptor (PgR) Status Positive
Percentage of cells with nuclear positivity
1-10%
Average Intensity of Staining
Moderate
HER2 by Immunohistochemistry (IHC) Positive (Score 3+)
Percent of cells with uniform intense complete
membrane staining: 446%.And yes I did do conventional treatments of surgery. I guess it was one way to get rid of a lot of cancer cells all at one time 😁0 -
I recently joined the weekly Taxol group and someone recommend that I join this group as well. I am very glad she did. It is very inspiring to read other posts. I went back and read many but there was far way too many to read them all.
My BC journey started when I went for my annual mammogram. I was called back for additional imaging and an ultrasound. Based on the ultrasound it was determined that I needed to have an ultrasound guided biopsy, Now I started to get concerned but I just nodded as she was explaining things. She did a wonderful job doing this but I didn't remember most of it. I got to my car and cried. At the moment I was so worried that my melanoma had spread. Although melanoma doesn't usually go to the breast first it is not unheard of and I was freaking out because that would mean I moved from stage 3b to stage 4. My sister is a BC warrior so she came with me for the biopsy and was with me through the whole thing. I can't say enough about how awesome both nurses and radiologist were. I had expressed my fear with the radiologist and she shared that she would be 100% shocked if the pathology comes back as melanoma but will not be surprised that I do have breast cancer. I hope this doesn't offend anyone but my original emotion at that moment was relief because no one wants to hear that they are stage 4. Once I got the call that it was indeed BC and not melanoma I was relieved and then it sunk in and I just cried and then I got angry. Cancer SUCKS!! It is such an emotional roller coaster. I already had an oncology team that I love so I met with all the members of the team fairly quickly and they took the time to go over my surgical options. I didn't know about treatment yet because my HER2 test originally was borderline and they had to send it in for further testing plus they needed results from the surgical pathology. I didn't know I was HER2 positive until after surgery. I choose to have a bilateral mastectomy, I believe this surgery was the best option for me due to immediate family history- Both mother and sister. All 3 of us have a different form of the cancer. My mother had stage 3d ILC, She was PR/ER+ but HER2- and my sister had DCIS ER/PR- but HER2+ plus Pagets. My sister and I had genetic testing done when I was diagnosed with melanoma since we were both around 40 when we were diagnosed but based on the mutations that were tested there was no genetic link. My mother passed away from a new primary cancer while I was going through my melanoma treatments and my father died of Leukemia the year before.
I am so excited to get my drains removed tomorrow. They are really starting to annoy me and by far the most painful part of the surgery. I see both my oncologist surgeon and plastic surgeon tomorrow. To be honest I haven't really looked at myself in the mirror yet but that will come. I do check to make sure there isn't any drainage from the incision. I am hoping they will tell me that I am healing well. Which I do expect to hear and then moving to the next phase- treatment.
I am hoping that I will be able to tolerate the treatment with minimal SE as many of you since I am feeling overwhelmed with missing days at work and time from my family. My husband and children are being so amazing but I hate that they have to go through all of this again with me. I am a teacher and it a lot of work to be gone plus I don't have a lot of sick days left since I had to take so many days for my melanoma treatment and surgery. I am allowed the days through FMLA I just will have to take a lot without pay. Hoping the best. I'm so glad that my sister told me to connect to this site!!!!
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Hi Sisterstrong. Let me first of all welcome you to this amazing group where the love is so real, you can feel it. Am so sorry for all you have been through especially dealing with melanoma and now BC. Your story reminds me so much of mine although with a few differences.
Like you, my mum was diagnosed with BC (left breast)in July 2014 which progressed to bone met in June 2016. It went to her liver in mid May and by June 7th this year (only 4 weeks of liver Mets) she lost the battle against BC. The hardest loss I have ever suffered in my lifetime. People are amazed at how I am able to stay sane with it all. She was the only family I had here as everybody else in my nuclear family is in Nigeria with some extended members in California. The Cancer coming back as stage 4 was the reason why I brought her to NJ in August 2016 for treatment (Jefferson health)
I came around to visit her as usual last August when I got diagnosed (what a luck!) so I stayed behind to start treatment at MD Anderson cancer center in COOPER. ( I love every member of my medical team, they are the best!) Hers was also different from mine. Hers was ER+PR+HER2- I was diagnosed in September 2017 a month after my 38th birthday . Like you too, my genetic testing came back negative.
Just like you my Initial results for HER2 was borderline. I had neoadjuvant treatment and it was after the surgery that we finally found out it was HER2 positive and that is why I didn't start herceptin until May. I finished chemo in mid February. Now herceptin is on hold due to heart function issues (had the last / 5th one in July 26th)
I am having another echo cardiogram examination on Wednesday the 19th then, we can move forward. Although, I am scheduled for an exchange surgery on the 2nd of October. We will see how it will all play out. I am seeing both my MO and my PS on the 25th to talk about the report of the Echocardiogram. I am thinking about moving the surgery forward so I can resume herceptin again. It's been about 7 weeks off and I don't feel comfortable staying off treatment for more than 9 weeks which is the recommended “off" period if any issue arise with the treatment. I hope my PS can squeeze me in somewhere in November (mehn! that man is swooped to the brim! It was a struggle to even get this date in the first place) this is really a dicey and confusing time for me. Am just going to breathe and see how it unfolds but I would rather resume my treatment even if it means my reconstruction will have to wait for longer.
Just like you, I HATE those drains and they were my nightmare post mastectomy! Sadly, I will have to get them again as I want my reconstruction to look as good as possible so I opted for the “latissimus" (if I was doing only implants, I wouldn't have needed them)
To think I actually first found my lump in May 2014 even before my mum was diagnosed and was told repeatedly that it was cystic/dense breast for years. I am just grateful that i was finally diagnosed when I was. It could have been worse. I am in remission and will do everything within my power to stay that way. I have changed my diet to mostly plant base now and I take a lot of supplements too.Was never big on sugar anyway.
Phew! That was one long write up there..lol. I wish you a much easier experience. It is never a jolly ride but you do have a good support system and that goes a long way.
Once again, you are welcome and all the best❤️
Princess
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Welcome lamloved - choosing your treatment plan is a very personal choice and one that all of us will support. I participated in a clinical trial and skipped chemo. I was blessed to have a great response to the targeted therapy (Herceptin and Perjeta). I changed my diet and lifestyle, got rid of stress and feel I am healthier mentally and physically than before diagnosis minus the aches from the AI.
I have a nutritionist and naturopath who provide guidance. I cut out sugar, dairy, gluten and alcohol for the most part; 80% of the time I am pretty diligent but do allow myself treats now and then.
I don’t know if anything I have done or am currently doing will prevent a recurrence. I don’t dwell on whether I made the right decision - I simply focus on enjoying each day and am at peace with where I am at.
I wish you peace with your decision too and NED for many years to come!0 -
Welcome sisterstrong - this is a wonderful community where you will find helpful information, support, encouragement and inspiration. I’m sorry your family has been through so much cancer. You are a strong person and will get through this too, we’ll be right here with you. Don’t hesitate to reach out
I remember those annoying drains and hope you get them out soon. You will feel so much better!
Make sure to take adequate time off work to heal and make your recovery a priority.
Wishing you the best, hugs0 -
Iamloved,
With Grade 3, I think you have to at least think about chemo and/or targeted therapy. Chemo actually works best on Grade 3 cancer because it targets rapidly dividing cells. Herceptin has been a game-changer for patients with HER2+ breast cancer. Recurrence and metastasis rates for HER2+ patients have decreased significantly since the development of Herceptin.
Deni1661 skipped chemo but did targeted therapy (Herceptin + Perjeta). Perhaps, you're a candidate for the clinical trial she did (or your oncologist might be persuaded to give that regimen a try).
Your treatment plan is your treatment plan. But, I'll think you'll notice that almost everyone on this board did chemo and/or targeted therapy. Best wishes, whatever you decide!
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Hi ladies!!
Wandalee I was diagnosed 7/9 and I am also triple positive. I am 10 days out from my second treatment of TCHP. I have 4 more to go then surgery. My MO said my tumor has already shrunk after 2 treatments. I have been struggling with surgery decision too although I am leaning towards a lumpectomy.I am 42 and have little kiddos and trying to make the choice to prevent recurrence. I just got my BRCA testing back and it was negative. Just like you I thought that would have made the decision for me.
WC3 I read in earlier post: triple positive have a high local recurrence rate after lumpectomy?! No one has ever told me that before or have I read it anywhere else.
I feel like I do a lot of reading and researching but maybe when it comes to triple positive I haven’t done enough?
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Elaine you made an important point re: grade 3 considerations. I was stage 1 grade 2 which was one of the criteria for the clinical trial. I also had a Mammaprint done which indicated I am low risk for recurrence. This might not be the case for everyone and supports the individualized care approach.
I am a firm believer at looking at all options and getting second opinions. Participating in the clinical trial was right for me based on my individual stats and might not be the best choice for others. Discussing treatment options and best possible outcomes with your MO can help in making a decision.
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SarahNola:
High for me. I am having neoadjuvant chemotherapy (I regret it. I wish I did adjuvant) and my tumor has "shrunk" but there could be residual malignant cells which increase the chance of local recurrence if it were not excised beyond the original boundaries. General there is a higher local recurrence rate with lumpectomies vs. mastectomies but recent advances in treatment have lowered the rate. I think lumpectomies are the right choice for some...those with small tumors with respect to overall breasts size, those who can't be out of commission long, those for whom the risk of a mastectomy would outweigh the benefit, etc. In my case I have no reason to try to save the breast. I would need radiation and still need reconstruction and would be left with something that could still harbor cancer.
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Good Morning All,
For those with questions about what path to take, as Deni worte look at your options and seek a second opinion.
Then, as ElaineThere said it is your plan. Start walking your chosen path, complete as much of your treatment a humanly possible, and never look back or question your decisions.
Move forward and thrive. I think it is the only way not to go bat-xxxx crazy over this wild ride.
Vicky
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WC3 thanks for the response!
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Here is some info regarding surgery type and recurrence rates for Her2+ patients. It is important to use data gathered after the use of targeted therapy as it has changed the stats regarding DFS (disease free survival), OS (overall survival) and LRR (loco-regional recurrence) rates compared to those patients treated prior to the regular use of targeted therapy.
" There is limited, and conflicting, data on the relationship between Her2 status and the risk of locoregional recurrence. Nguyen and colleagues previously reported a higher rate of local recurrence in Her2 positive patients compared to HR positive/Her2 negative patients (adjusted hazard ratio = 9.2, 95 % CI 1.6, 51; p = 0.012); however, none of the patients in this 2008 study received anti-Her2 therapy, which has become standard of care in patients with Her2 positive disease (Nguyen et al. 2008). It has been well-established that the use of adjuvant anti-Her2 therapy in the treatment of Her2 positive tumors reduces the risk of both local recurrence as well as distant metastasis (Piccart-Gebhart et al. 2005; Romond et al. 2005). Therefore, it is unknown if a higher recurrence rate would be realized if these women had received modern anti-Her2 regimens. Without definitive evidence of higher locoregional or distant metastasis in women with early stage breast cancer, the reasoning behind higher mastectomy rates in Her2 positive disease remains unclear."
https://www.breastsurgeons.org/docs2017/posters/ASBrS_2017_Poster_257006.pdf
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FWIW: I had my last of 6 TCHP chemos today. Also discussed surgery plan/options with surgeon and some with MO. In my case, there is involvement in 3 lymph nodes that we know of. 2 lumps, one started at 5cm and is now about half that, probably less, she didn't measure it today but, like me, had trouble even finding it so we both think it shrunk since treatment #5. Second lump was just under 1 cm to start, it's kinda deep so don't have a recent measurement on it. My preference is lumpectomy, and surgeon is willing to try it, after making sure that I understood that she'll have to take a fairly decent chunk out due to location of the lumps, and that there's a small chance that I may have to go back for mastectomy if she can't get it all. I have complete faith in her, though, and am thinking positive.
I specifically asked about recurrence rates with mastectomy (3-5%) vs. lumpectomy (5-7%). Percentages for survival are the same, 90+ percent. I'm assuming she has access to the most recent neoadjuvant into, as breast cancer is all she does. This may help some of you with decision making, keeping in mind of course that everyone's situation is a bit different.
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Thank you everyone for...#1 being supportive. #2 Advice that I will consider #3 Showing tremendous strength in the face of this battle. I saw a shirt in a Mayo Clinic gift shop..."No One fights alone!" How true!
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I have a question for everyone, my BS said I needed to make a decision by October 30th between lumpectomy or mastectomy. I will have had 3 treatments of TCHP. I’m wondering if others are given timeline for decision even before treatment is close to complete? She said she needed to get it scheduled, I don’t want a schedule issue to shortchange my time to make a decision.
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mactaz: I had the convo and made the decision today, right before my final chemo. Still have to wait to hear from them to schedule, but surgeon said 4 weeks, I asked for 5 and she was fine with that. Gonna shoot for Oct. 17. This seems like way early for them to expect a decision. A lot can change between now and your final treatment. Just my 2 cents.
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Special K thanks for the post and the links!
Kat22 congrats on finishing round 6! I can’t wait until I am saying the same thing. And thanks for the info!
Mactaz I should have my last TCHP at the end of November and my surgeon said we will meet after that and I should plan on recovering in December and having surgery in January. She said I don’t need to decide which surgery unti right before.
WIshing all you ladies a nice restful evening!
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SpecialK:
Thanks for digging up the data. I bookmark everything but I'm using my phone and it's difficult to search them.
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MACTAZ - I had to have a mastectomy but had to decide between a unilateral or bilateral. Both my BS and PS met with me multiple times to make sure I was comfortable with my decision. I was never given a deadline and getting the surgery scheduled by a specific date was not part of our discussions.
I think it’s really important to be given whatever time you need to make a decision. This is something that you need to be completely at peace with. It took me almost a month to make my decision.
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MACTAZ:
I was leaning towards a BMX from the beginning and that is what is booked so I was never given a deadline to decide but I also reserve the right to change my mind at literally the last minute on the operating table and go with something more conservative.
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