TRIPLE POSITIVE GROUP
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yeslama - excellent news, so glad to hear!
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Hello all! I'm not sure if this has been discussed previously on this particular thread, but I'm wondering if any of you have used/are using estrogen cream to make all things better sexually. I've heard that the small amount of estrogen locally applied has not been shown to increase estrogen in the blood stream. But since we are triple positive, we're obviously at greatest risk for any estrogen at all. I'm just wondering if it's possible to use the cream while on AIs since they effectively shut down estrogen in the body anyway. My oncologist is certainly not recommending I do this but he also understands that quality of life is important too. Just wanted to get your experiences and thoughts on this.
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Hi Joules44 - when I was diagnosed, my breast surgeon had me discontinue estrace. She said I should no longer use it, that the risk was too high for me, even at small amounts. Perhaps it's based on my specific diagnosis (stage, tumor size, etc) and post-menopausal status.
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Joules - my oncologist prescribed the cream to me. He said there's a lot of differing opinions on whether or not its ok for BC patients, but he thinks the estrogen in the cream remains local and very little if any of it makes it into the blood stream. My estrogen levels have remained undetectable. Most people only need to use it regularly for a couple months, then you can use it sporadically. Even with my MO's blessing, I don't feel terribly comfortable about using it. But I also think there's no point in surviving the cancer if the cure ruins your life.
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This maybe overkill and, I may come to regret it but, I will be starting Nerlynx 3/22. After a quick trip to Vegas. 😂
It looks like my Safari is back on this year so I shall have to reduce dose or take a 2-3 week break in August.
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thank you so much for sharing your experience. My gynaecologist, a breast cancer survivor herself is the first person to tell me about the estrogen creams. Her doctors at Emory feel they are safe. Who knows? Everything we do and put in our bodies has consequences good and bad. Thank you again. :
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joules - in a conversation with my MO about recurrent UTIs, while on letrozole, he indicated he would be willing to prescribe an estrogen cream, as it has been shown to help. My urologist was not willing to go that route - his wife is an OB/GYN and breast cancer patient as well, and he gave that idea a nope. It turned out that my issue was an anatomical one that I was born with, had corrected when I was in college, which had recurred. The urologist was able to correct it again and the problem was solved so I never did return to the estrogen cream option - all this to say, it was ok with my MO!
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Thank you SpecialK! I’ve really had to grieve the loss of my old sex life. It has been one of the hardest parts of the breast cancer experience for me. There is so much wrapped up in it and I always thought I would end up being one of those elderly people with an active sex life. I have been trying to come to terms with where I am now and what my body is and isn’t but it’s been tough if I’m being honest.
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Finally I've decided to post. Diagnosed 11/24/21with stage 1 TPBC. Mass was 1.5 x 1.6 x 1.3cm and after 6 treatments of Taxol, Herceptin and Perjeta it was measured at 0.8 x 0.9 x 0.3cm. No lymph node or lymphovascular invasion present. My genetic panel came back for CHEK2-157t which is a low penetrance variant. Two genetics counselors recommended bilateral mastectomy and colonoscopy every 5 years. This Thursday I am having my 12th and final Taxol. Mammogram and ultrasound on 3/7. Bilateral mastectomies are scheduled for 3/23 with expanders and eventually implants. If all goes well with pathology I'll finish off with Herceptin and Perjeta for the year. I'm seeing my MO this Thursday and I really want to push for an AI (I'm 44) and eventually a oopherectomy if not hysterectomy. Physically I feel pretty good. I've tolerated treatment well so far. My mind is my biggest enemy. I research too much and my anxiety is really bad. I cry way too much and I know I'm depressed. I'm finally seeking out help. My MO told me my situation is “highly treatable and highly curable" but I just can't shake the fear….I have to give HUGE props to SpecialK for being a guiding light behind the scenes for me. 💕 I'll be having skin sparring mastectomies so any and all advice would be welcomed regarding ALL the things with this journey. I'm 95% ER 95% PR and +++. Blessings to all of you. 💕
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Laura - you've had to deal with a lot and make a lot of decisions in just 3 months. Try to be kind to yourself. Many of us need professional help to deal with the PTSD that comes with all this. Sounds like you have a good team to support and advise you. SpecialK is the expert but in my opinion, the discovery of HER2 and Herceptin have been game changers as far as outcomes are concerned. I had a hysterectomy at age 37, way before BC and have never been sorry. My daughter is older than you are and has been worrying about what she will do when she needs to have her Mirana (sp?) removed later this spring. But that is a decision you don't need to make right now. Get the breast surgery out of the way first.
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Hey @Laura7770, I too was told by ONC team that my cancer is highly treatable and curable. And, like you--- it doesn't make me feel less vulnerable to all of the risks we face as cancer patients. My genetic panel was negative, so I don't share that particular risk or concern.
I had a skin sparing bilateral mastectomy, but I wasn't able to keep my nipples because I had paget's disease and the skin/nipple on my left breast had cancer. I did surgery first, then chemo, and currently doing radiation. My plastic surgeon placed tissue expanders at the time of my mastectomy and I had planned on reconstruction. However, for me-- the pain of the expanders was too much. They pinched and caused a lot pain when I bent over or stood/sat. So much so, that I had him remove them and do a flat closure before I started chemo. I didn't want to go through the pain of reconstruction along with chemo/radiation. My flat closure wasn't done well and I have what they call "dog ears" (excess skin/fat on the sides of my chest). It is uncomfortable and I may have a corrective surgery to fix that, but for now- I am focused on getting clear of all cancer first. I share this to help you think of questions or discussions you may want to have with your surgeons as you consider your mastectomy and reconstruction plans.
Regarding the fear, I must confess that something inside of me is confident that the cancer has already spread. I am skeptical about what doctors and nurses don't say until it's too late. In my experience, they focus on the positive and on the strong evidence that the treatment plan will be effective. They downplay oddities on scans, for example. My bone scan showed "nonspecific small focus of increased update with the manubrium corresponding to sclerotic lesion on outside CT exam. Could represent fibrous dysplasia however early osseous metastatic disease is a consideration"-- that scan was 09/09/21 and my Onc said she does not believe it is mets and that it is likely from an old injury to my chest. Okay.. I had to just let that go and move on because this was right before chemo and I just had to focus on getting well. However, this is one example of why the inner-voice inside me says that I should be scared and that nothing is certain in cancer care. I hope the fact that I'm scared and skeptical helps you feel less alone. I think that so many of us spend time worrying about how our cancer story will end and it's totally normal. During active treatment, it is obviously front of mind but from what I understand, even once treatment ends the thoughts aren't ever far below the surface.
I hope you have an excellent doctor and that your concerns and questions are carefully considered by them and competently answered/explained to your satisfaction. Best of luck!
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Hi @1946Taco It has been a good deal of stress dealing with going from no medical problems to this. I already have anxiety so that factor doesn't help. I agree, seeking out help is crucial, I can't make it through a year like this. My MO also stressed how strides were and continue to be made in treating our diagnosis. It seems I'm the only one that has the doubts/fears when he and I talk. The internet is a double edge sword and I find myself down that rabbit hole and stirs up the doubt. I mean inreality I'm blessed being diagnosed at stage 1a and not later on. I feel at times I need to pull up my big girl pants and get on but I'm struggling. My MO agrees with you, hysterectomy in time, let's deal with the here and now first. Thank you for your words!
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Hi @barbojoy The thing is I’m a nurse and I have complete and total faith in my medical team. I don’t feel they are hiding anything from me or sugarcoating but it’s my own mind that’s dragging me down. I know that my MO would be straight forward with me if he felt different and wouldn’t choose the words “treatable/curable” if he felt otherwise. I too am losing my nipples. I have read about the expanders and know that it’s not going to be a walk in the park. All I can is try like you did! In my heart I want to refuse to live in constant fear. In my mind that barricade is still up and I hate it. I have an amazing husband and family and I cannot fathom not being here with them. I fight for them but that son of a b*tch doubt just keeps tracking me down. With surgery coming up in the next few weeks I’m both anxious and terrified. All I keep repeating is clear margins/PCR…this is all too much the majority of the time and I just want to be okay, that’s it! I thank you for sharing your story and I pray we both can find that fork in the road where doubt and fear can be overcome with hope and optimism.
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laura7770 - hey girl! Good to see you here! Yay for being almost done with the T portion of your chemo - that is great! Take each step as it comes, it is super easy to go down the rabbit hole, but no purpose is served by worry. It changes nothing and saps today's happiness, energy, and focus. I know that is easier said than done, and I don't always follow my own advice, but I will still offer it as a recommendation.
You guys are sweet - thank you for that compliment - encouraging those that have come after me honors the people who did that for me when I first came on this site!
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Laura - see if you can not be the nurse and just be the patient. You have confidence in your medical team and that helps a lot. They will answer your questions and help you make informed decisions. You said you are 1A, your tumors have already shrunk and you have no lymph node involvement. All very encouraging signs for a long life with your wonderful-sounding family. Most of us who still post well into recovery is because we remember the fear and have made it to the other side and want to be here for you. We are. Stay close but set WEBMD aside for a while.
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Hi all,
My first post, hoping to find some support. Age 37 found lump 11/11/21 appointment with GP to get referral to breast clinic was 11/19. First ever mammogram and ultrasound was 11/23. Radiologist said highly suspicious. Biopsy 11/24 results came via mychart online day after thanksgiving IDC grade 3
The following Monday nurses called to schedule appointments with surgeon/plastic surgeon and oncology. Triple positive 1.7cm.
Surgery scheduled 12/29/21, postponed and rescheduled 3 times due to Covid. BMX finally takes place 1/25/22 sent home same day due to lack of bed space re: covid. No lymph node involvement. Tumor grew to 2.4 cm making me a stage 2.
Oncology appointment on Friday the 4th of March Taxotere/carboplatin/herceptin. Really feeling down hoping I’d have weekly taxol + herceptin.
Please can anyone give me your insight, side effects, anything regarding this regimen. I’m flat out terrified.
Lots of love, hope and faith, Jess
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Jess,
I did Adriamycin + Cytoxan and then Taxol + Herceptin + Perjeta, so I can't really shed light on the TCHP regimen. I just wanted to wish you the best. I know that I was terrified about chemo, and it turned out to be tolerable. Also, don't assume that your tumor grew; imaging isn't always accurate when it comes to sizing. ((Hugs))
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1946Taco- you are so right. I actually get angry with myself for having so much doubt when my MO himself told me my situation is very optimistic. I need to step back from being the nurse and just breathe. Thank you for your reply and your encouraging words! You all are a blessing! Stepping back from WebMD is fantastic advice!
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Hi luvpups0611 - I was was diagnosed in June 2020 and started treatment TCHP end of June. I did six rounds, then 12 of herceptin and perjeta. Treatment (TCHP) is cumulative, so you may not start to feel some of the side effects until after subsequent rounds. HP is much easier. I have GI issues that predated my BC diagnosis, so I did experience nausea and diarrhea with TCHP. Take the medication as directed by your MO and you’ll do fine. The oncology nurses are very helpful and most centers have a triage line that you can call with questions and issues. Don’t hesitate to call them. They are there to help. I had issues with staying hydrated and went in for frequent IV fluids, which helped. I started loosing my hair on day 10, so I had it buzzed and got some cotton chemo caps. Wear comfy clothes to treatment, something that opens in the front so they can access your port. I brought snacks and lunch, audio books and downloaded movies ahead of time. Remember to bring a phone charger and earbuds with you. Best of luck with your treatment.
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hello! Checking in after 10 years of being cancer-free tomorrow! Yay!!! I still see familiar names, Fluffqueen and SpecialK! Great work you gals for guiding our triple positive sisters through the years. Has anyone heard about the other girls here way back 2012? Camillegal, Lago, rozem, and of course, TonLee. I hope they are all doing well too. Sending lots of love and positivity to all
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I had my post-radiation follow up with my MO this afternoon, along with my monthly Zoladex shot. She told me to make a follow-up with my breast surgeon, so that is next month. My next echo will also be coming up then. And then I see her again in 3 months, and also my RO follow-up. SO MANY appointments. I've also found a concierge PCP practice that I think I'm going to try for my next physical because I have learned during this that I really don't like it when medical offices don't communicate with me or give me enough time and am willing to pay someone to be extra nice and responsive to me. We'll see.
Anyway, we are going to start hormonals with Zoladex + exemestane. The prescription is in, but I haven't picked it up yet. Originally the plan was tamoxifen but I expressed willingness to try OS + AI because the recurrence numbers are a little better. My MO said she normally doesn't do this with pre-menopausal women because the side effects are a little worse and rates of completion aren't good, but felt that I am a "compliant" patient and it's worth a go. So we're going to try it and if it's intolerable to me, then we'll go back to the original OS + tamoxifen plan. I'm very nervous about it (and I'm very thin already so at higher risk for bone density issues; I wouldn't be surprised if I already have osteopenia) but I think if I didn't at least try it, I would always wonder. So we'll see.
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Hi Jess! I was 49 when I was diagnosed and your post brought me back to those beginning days, weeks, months. I had Taxol and Herceptin and honestly did pretty good all the way through. I worked except for the days I had treatment and my bloodwork was good enough throughout that I never had to miss a chemo treatment. But you'll soon learn that your story will be all its own. It is crazy to me how unique each of our stories are every step of the way - the treatments, the side effects, our mental health, the surgeries, the decisions we make. I was scared at the beginning and I still have fears some days. If I can give you any advice, I would say to stay curious about your life as it's unfolding. Release the expectations and/or fears and just try to observe with curiosity. I am so much happier when I remember to stay in that place. And I always think of this Tom Petty line, "most things I worry about never happen anyway." That works in just about every instance of my life, lol. I would also suggest acupuncture during the year of your treatment. I firmly believe that I felt good despite chemo because I regularly went to my acupuncturist, who is a godsend. Please continue to check in and let us know how you're doing. Lots of love to you!
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I haven't seen those ladies in a while but I don't post as much as I used to. Good to see you though!
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gamzu- it's good to hear from you! I was wondering how everything was going for you. I'm interested in hearing how your experience with AI's are. I started tamoxifen recently- about two weeks ago. So far its fine. I had some hot flashes the first few days but haven't noticed much since. I did read that they can show up later so we will see. I wasn't sure if I wanted to start before radiation but my MO said too so I did. I was worried a few weeks back as I had headaches form the start of Jan until early March. They were getting awful but since I went u dear anesthesia, they all just stopped! I talked to my MO and he doesn't think we should be concerned. Keep monitoring.
Edit to add: I always wonder how helpful blocking estrogen is in triple positive patients… I know that triple positive patients tend to get less benefit bc of the Her2 and ER cross signalling. If anyone find good articles on this- I’d love to read them.
I had some delays. I caught Covid before my re-excision and planned oncoplastic procedure. It was a bit of a gong show. They decided to use local for the re-excision while I had covid and not do the oncoplastic reconstruction until later. I had a bilateral oncoplastic reduction, I'm so grateful for my plastic surgeon. Even though now I've experienced some delays getting to radiation, my breast after the re-excision was brutal- they took a total of 38g of tissue from my original lumpectomy and then re-excision from the 9'oclock position. With the way my breast was, it just formed a huge dent. However, bc they didn't do the procedure together I still have a big scar from my lumpectomy but I feel SO much better about my breast without the big dent. There also was no residual cancer found in the re-excision or in the breast reduction pathology so I'm feeling very positive. I have my radiation planning this next week. They aren't doing a boost dose though. With the oncoplastic procedure, they RO said that we wouldn't do a boost to the site but she felt that was a ok choice considering my small tumour, and systemic treatment. I attached the article about early stage Her2+ and boost if anyones interested. https://ascopost.com/news/september-2020/local-recurrence-with-radiation-boost-in-her2-positive-breast-cancer/
I'm very excited to get radiation started and over with. Im not crazy about how it all unfolded- they took me off Herceptin too by accident but I got it sorted with only a week delay.I'm really looking forward to a hopefully much better summer then last year. I had my 9th Herceptin so over half way done Herceptin now too! I just had my echo so hopefully it all goes smooth.
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Happy to hear an update from you, 1982M! I've been wondering how you're getting along. Sorry you've had delays, but glad you are through your surgery and finally starting radiation.
I haven't noticed any side effects from the OS + AI yet except maybe some mild indigestion, but it's only been 2 weeks. From my understanding, 8 weeks is about when people start to really notice stuff. I try not to think too much about the ER-HER2 crosstalk. Statistically the prognosis for triple positive is very similar to HR+/HER2-, so obviously something about the treatment must be effective, and a lot of the cross talk studies are in vitro, not in vivo, so I just don't find it particularly helpful to imagine all my treatments canceling each other out to null effectiveness. If that was how it worked in vivo, triple positive patients would all be relapsing left and right but they aren't. I'm definitely going to push for Nerlynx once Herceptin is done, though!
This study talks about the effectiveness of Tukysa, Ibrance, and fulvestrant on triple-positive cells in vitro: https://aacrjournals.org/mct/article/21/1/48/67516...
But it looks very early stage and I can't imagine a drug like Ibrance, which commonly causes severe neutropenia, ever being approved as a "bonus just in case" treatment for early-stage patients, particularly stage 1 patients in their 30s like us. The marginal benefit wouldn't justify the risks.
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Hi 1982m, I've never really worried about being HER2 positive. yes, I freaked out about Cancer but the treatments for HER2 are excellent. I'm coming up on 13 years cancer free in June.
Your comment "Edit to add: I always wonder how helpful blocking estrogen is in triple positive patients… I know that triple positive patients tend to get less benefit bc of the Her2 and ER cross signalling. If anyone find good articles on this- I'd love to read them". I've never read about this and I don't think that is the case but I sure could be wrong. Hopefully SpecialK will check in on this.
Thinking good thoughts for you.
Liz
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hi Jess! I have a very similar story to yours. My tumour was originally 1.7 cms but because of covid delays it was 2.5 cms (and two positive lymph nodes!) I finished chemo almost a year ago and I'm feeling great. The beginning is very scary and stressful. I did the chemo regimen you were prescribed and it wasn't as bad as I feared. Big hugs!
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I don't have a ton of info on the crosstalk situation between Her2+ and ER+, and most of what I have found previously online is older information, which is focused on treatments that become ineffective due to resistance and looked at in the MBC population. Resistance to treatment is, I believe, more prevalent because this population is on treatment for a longer period. I have seen very few early stage patients on this site who have resistance from the start. Like, I can count on less than one hand. Also important to note - after 2013 neoadjuvent treatment of tumors that met the criteria to receive newer targeted therapy (Perjeta) offer a better look at the effect of treatment on the tumor pathology. Those of us who had adjuvent chemo with Herceptin have no idea how these medications worked against our tumors. None of us can really know about the pathological effect of anti-hormonals on TP patients because those drugs are post-surgery, so we are all crossing our fingers that they are effective. I will say that my MO like letrozole for his Her2+ patients over Tamoxifen, and this may be due to the crosstalk issue. At the time I didn't really question him - surprisingly, lol! We did since discuss changing to Tamoxifen when I started to lose bone density, but he preferred that I remain on letrozole and start Prolia rather than switch to Tamoxifen and potentially build bone that way. There is some discussion about different anti-hormonals in the links below. Also important to acknowledge that what we do have are stats about recurrence in the early stage triple positive population, which are pretty encouraging. The current treatments available seem to bring Her2+ patients to the same recurrence risk as non-Her2+. For both populations that are ER+ there will always be some degree of ongoing risk of recurrence long-term, which is extremely problematic to calculate on an individual basis. Here are a couple of older looks at the crosstalk issue.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3808214/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2746389/
edited to add another link - I actually searched crosstalk and my own member name and found this additional link which was posted by another member and then discussed, it does echo some of the info in the above ones, but may provide some additional info too.
https://www.hindawi.com/journals/ijbc/2018/7835095/
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My third echo for Herceptin is coming up next week. Time flies even when it seems like it isn't. I shared my bad experience with my MO at my last appointment and she was disturbed and offered to refer me to another practice, but they promised changes so I'm willing to give it another chance. I have an order in hand from my MO that says in all capital letters "patient requires female tech" so hopefully it'll be fine. If not, then I know there's another option for the remainder.
I also finally got around to reading the information pamphlet on exemestane (after taking it for 2 weeks already; I'm getting more lax!) and noted that the "call your doctor immediately" symptoms are listed as shortness of breath or having the sudden urge to harm yourself or others. I'd read about people possibly feeling suicidal while on hormonal therapies, but becoming a homicidal maniac? OK then!
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Thanks SpecialK,
Honestly I feel (mostly) really positive about my outlook. I am definitely more inquisitive then anxious about any of it any more.
I have so far felt really good on tamoxifen expect maybe my mood- but I can’t tell if it’s situational or from the meds. I guess only time will tell. I had a few hot flashes the first week but going into week three, seems fine so far. Hips feel a wee bit achy but I couldn’t just blame tamoxifen- that’s been an issue on and off for a while.
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