Urgency of start time, 2nd opinion, and treatment questions
Hi everyone. My mom was diagnosed a week ago on 2/14 with IDC stage IIB, grade 3, 90% proliferation rate, triple-negative in left breast (1.7 cm) and at least one lymph node (5.6 cm). We went to Houston Methodist West and were able to see the surgeon same day. This week we had a port installed, PET scan (which showed no spread elsewhere), met with oncologist, and gave genetic test sample. Next week she has a heart echo before treatment starts.
Earlier this week, I thought it would be a good idea to get a second opinion. I picked MD Anderson at the Med Center. We have the next available appointment on 2/28. The problem is that team is 2 male and 1 female; my mom wants to see an all female team because of religious norms. The next available all female at MDA is on 3/6.
If we skip the 2nd opinion, she could possibly start treatment on 2/28, pending everything is clear from test next week. If we take the MDA 2nd opinion on 3/6, we would probably have to start treatment on 3/11 at the earliest, pending MD Anderson doesn't have a significantly different recommendation from Houston Methodist West. For her case, is the 2nd opinion important enough to warrant starting treatment around 2 weeks later? Main concern is how much it will grow in those 2 weeks over value of 2nd opinion at MD Anderson.
Also, the treatment plan given at Methodist is Adriamycin + Cytoxan every 2 weeks for 8 weeks. Then Taxol every week for 12 weeks. Then lumpectomy surgery and possibly more chemo. Then radiation.
I'd like some feedback on this treatment plan if possible and any of the following questions. I've gone through posts on here but there's just so much content that it's becoming overwhelming parsing through everything. Is immunotherapy definitely out of the question? Are there other options for chemo that work just as well but won't have an affect on the heart? Does Methodist vs MD Anderson really matter?
Thank you all. I really appreciate the support.
Edit: Sorry I posted the first half of this post in the Just Diagnosed section as well. Just included it here for a through explanation.
Comments
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Hi bcnav, and welcome to Breastcancer.org,
We're so very sorry to hear of your mom's diagnosis, but she is so lucky to have you advocating for her! We're really glad you've found our community and we're sure you'll find lots of great support and answers here. We're all here for you both!
While you wait for some more answers from our wonderful members, you may be interested in checking out the following pages from our main Breastcancer.org site:
We hope this helps! We look forward to hearing more from you soon!--The Mods
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I had a very similar TNBC diagnosis to your mom. My tumor was larger, my lymph node was smaller but also high grade and aggressive.
My chemo was Taxotere and Carboplatin x 6, every 21 days. It worked very well on me. You might want to ask your team their opinion on that protocol. However, most people on this site with TNBC seem to get the AC/ T plan that your Mom's doctors are planning for her. (My MO felt AC was a harsher chemo and had more potential long term SEs than Taxotere/Caroboplatin.)
If she has a lymph node involved already, the haste to begin treatment is a little bit less. The horse is out of the barn, so to speak. I think it was 4 weeks from diagnostic mammogram to first chemo for me.
However, I think it's smart not to delay unduly. But -- if your Mom recurs, or if she might be a good candidate for an appropriate clinical trial, then being treated at MD Anderson could be an advantage in the long term.
Mostly, the initial chemos are "by the books," and not that likely to vary.
Wishing you and your mom the best!
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Hi. I know right now you feel a lot of urgency but I really don’t think delaying about a week is going to have much impact. I did get 2 opinions and I think that it’s a good idea, especially having access to MDA. They certainly have an amazing reputation but I have been told that the volume of patients can be overwhelming. I haven’t been there myself. I think your mom will benefit from seeing two options and then can choose the best fit. ACT was recommended by both MO’s ( I also did carboplatin due to aggressive nature of my tumor.) I think it’s worth asking about carbo/taxotere option if you’re concerned about AC. The only immunotherapy that was mentioned to me was part of a clinical trial. One suggestion is to check path results for basal/non basal status and PDL1 status- they are the areas of TN research lately. MDA will probably recheck pathology and they advertise cutting edge tumor testing so might as well take advantage of it. Good luck!
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Bcnav, your mom's diagnosis is virtually identical to mine except my lymph nodes were negative. I had the same chemotherapy as recommended for her, except that I had surgery before chemo. (The oncologist recommended chemo first like your mom's doctor, but I wasn't sure I wanted to go that route.) A second opinion can help you both feel more confident in the treatment plan. The study I've seen on the importance of beginning chemo ASAP was for people who have had surgery first. It recommended starting chemo within 30 days after surgery; however, the study intervals were 30 days, 30-60, 61-90, etc. You're talking about a brief delay. Due to a variety of circumstances and complications, my chemo didn't start until more than two months after surgery and, so far, I have no evidence of disease, if that offers encouragement.
I agree that it's worth asking about the carbo / taxane option in terms of efficacy and possible side effects. My friend was diagnosed about the same time I was. She works for a university-related cancer center and that's what they recommended. Yes, as Flynn said, try to get as much specific information about tumor characteristics as possible. My pathology report didn't, for example, address androgen or basal / non-basal status. Only later did I learn that those might impact prognosis, additional treatment options, or eligibility for clinical studies. As noted, MD Anderson would probably do those additional tests, but my Baylor facility pathologist didn't.
Whatever you decide, know that there are many wonderful people on this forum who generously share their experiences and what's helped them. I hope that your mom's treatment goes smoothly.
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Thank you all for your replies. I really appreciate it
VLH, can I ask why you had chemo if your lymph nodes were negative? And why did you decide on surgery before chemo? Our team stated chemo first to monitor how the tumors are responding.
But I’ve been wondering shouldn’t she need some chemo after surgery as well, just to be sure all circulating cells are removed? I don’t quite understand the need for radiation therapy, especially if chemo would’ve already destroyed any remaining cancer cells?
My main concern with AC/T is just the heart risk associated with Adriamycin. If Carboplatin/Taxane is as effective and less harsh, that seems like a better choice. But I’ll read more of the different drugs this week.
As far as the pathology, they list biomarkers, Ki67, TILs, and associated necrosis. But nothing about basal or PDL1 status. I’ll have to read about that as well before asking the doctors. I feel uneasy asking these questions because it feels like I’m questioning their care or expertise
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I think chemo is the norm for my Stage II, Grade 3 triple negative cancer, regardless of lymph node status. I was initially diagnosed as HER-2 positive and had chosen to go against medical advice, forego chemo and targeted therapy and proceed with surgery. As you've noted, chemo first is typical so that your mom's team can monitor how the tumor responds to the drugs. A complete response is related to a better prognosis and they'll only know if that happened if they can see the tumor shrink. My doctor recommended the AC+T instead of TC because of a study showing a survival advantage. I think there have been other studies with different findings. As you've mentioned, Adriamycin presents a greater cardiac risk and it's totally appropriate to ask the doctors to explain why they believe it's the best choice.
Regarding chemotherapy after surgery, I've not heard of that routinely being done unless there is a concern about the tumor not responding.
As to radiation, as I understand it, the chemo is a systemic attack on the cancer; that is, treating the entire body. Radiation is a local treatment isolated to the breast (and lymph nodes as appropriate). Think of it as a two-pronged approach planned to tackle the cancer in different ways.
I have no medical background what so am just sharing what I recall. It's unfortunate that your mother finds herself dealing with cancer, but I think she's lucky to have you in her corner learning as much as you can.
Lyn
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Unless you have removed all the lymph nodes and tested them, there can always be live cancer & micromets undetectable by imaging. Negative lymph nodes are obviously more encouraging than clearly-positive lymph nodes but still no guarantee of the cancer not having traveled. With a high grade, aggressive cancer, it is probably wise to assume there are stray cells, and treat them. And you want to know the chemo is working.
I also wanted to just get rid of the tumor right away, but I was persuaded to do the chemo first and I am really grateful I did it that way. 1. I was able to have a teeny lumpectomy surgery and heal rapidly from it, whereas had I had surgery first they would have taken half of my beast. (Instead, it was a 'melon ball' sized lump.) 2. While experiencing the yucky-ness of chemo, I had my every shrinking tumor to encourage me... I knew I was on the right chemo. My tumor and lymph node were not palpable after 3 chemos. (Yes, I still had to do them all!)
I questioned my MO about 'why not AC/T?' -- as I had read that study showing a slight edge in pCR rate (something like 1.5 or 2% more pCR). However, I am very athletic and I had made it clear to my MO that quality of life was important to me... being able to resume my normal life after treatment and do what i enjoy. Also, because my family is very long-lived (virtually everyone gets to 90+), if I were to be cured, my organs had to last me another 35 years... The heart data and the (rare) possibility of developing a form of leukemia, he felt, outweighed the small advantage of AC/T given the particulars of my situation.
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