TRIPLE POSITIVE GROUP
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Hello,
My mom was recently diagnosed with Triple Positive IDC along with Metastatic Adenocarcinoma with positive left axillary nodes. It was just a random, yearly mammogram. Anyway, all is done, and she had her first chemotherapy. I really pray and hope that she will only go through one trial of chemo, and that's it, and just get better, and just get a swift recovery and cure soon.
It's painful seeing your mother going through it, right after witnessing aunt passing away from Triple Negative Br. Ca. earlier last year at a very young age. We try so hard to ignore that and believe that it's just a coincidence. And not everyone's situation is same, but it's still very hard.
I pray for all of you, I hope that each and every beautiful lady out there will fight it off and get through it! You are all truly strong women whoever is going through it. Stay positive!
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Hello Whisperhope,
Welcome to BCO, we're so glad you decided to come here to share your story.
Your mom sounds like an amazing and strong woman and she is lucky to have you by her side.
If you'd like to connect with other caregivers here is the link: Caregiver and Family Support Forum
Wishing your mom and you the best.
Keep posting!
The mods
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Cassie - how big had they thought the tumor was???? BTW, woo hoo!!!!!! I know many of us have had a complete response to neo adjuvant TCHP, including myself.
Whispers - you came into this topic at the right time, see, the TCHP (and other chemo plus antibody treatment combinations) can and does work for many. Have your mom get onto the monthly chemo group. It is a wonderful sisterhood, to help with all the side effects.
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CassieCat!! That is the best news ever!! congratulations!! So happy for you. Makes all the Chemo Hell worth it! How are you doing after your Mastectomy? Did you get reconstruction? Have a great day my dear!!
Patty
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knm, I'm not sure how big each tumor was, but I could clearly and easily feel one of them (which is how I first knew something was wrong, finding that lump).
Thanks for the congrats. I think I'm still a little numb with the news but trying to be cautiously optimistic.
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WhispersHope Triple negative is much more aggressive than triple positive. Your mom has lots of options for treatment. I also recommend you contact imermanangels.org or if you are in the USA the American Cancer Society (reach to recovery program). They can pair you up with another caregiver as well as pair your mom up with another survivor of breast cancer who have already gone through this. Imerman's will match you closer in age.
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Thanks SpecialK - still seems less invasive than the heart cath I got last month. Surprised I didnt get a Muga instead.
HIP HIP HOORAY Cassie!!!
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Tremendously great news, cassiecat!
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Cassiecat, awesome news!!!
So saw the Cardiologist... I am obviously skipping my next Herceptin. I have a follow up echo Feb 3rd. They are putting me on 2 heart meds at the lowest dose.
They think the heart function decrease could also be be a byproduct of my 12 day hospitalization. I had pretty severe body atrophy. I am going to start exercising more....so hoping my heart function will return to normal.
If it does, I am not sure I will go back on Herceptin any way . I saw results of one study that showed a slightly less survival rate for patients with HER2 that did 6mo vs 1 yr of Herceptin. There was between a 2-3% difference. But the participants had to have 1cm or greater size tumor to enter the study. Mine was .6cm...so just not sure my heart is worth the risk for 2-3% or possibly less increase in chance of recurrence. My breast surgeon thinks I don't need to continue Herceptin....need to talk to my oncologist.
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Jenniliza - that's what they did to me. One pill to slow my heart rate and another to dilate the vessels to give the heart a rest so that hopefully it will recover. They raised the dosage on one of the pills about 2 weeks later. Hopefully, you won't have to do the heart cath. I was not to crazy about that procedure. Not nearly enough drugs are given to keep the nerves calm and the pain away. My tumor was .6 also so I can't help wondering about overly conservative oncologists.....killing the cancer, sure....damaging other organs....a real possibility.0 -
Yay Cassie, fantastic! It must be such a relief to know you responded! We non-neo-adjuvant gals have to just guess and hope for the best.
WhisperHope, welcome. You're Mom has one of the very best types of breast cancer you can have with all of the new treatments out there these days. Many prayers from me, and feel free to post and ask questions!
Blownaway and Jennliza, exercise actually helps with a decreased LVEF. Even just moderate, easy treadmilling or walking. This has been proven by a large study done at Duke Clinical Research Institute (HF-ACTION). I am not sure why your cardiologist would tell you just to rest Blownaway. Check with him or her and see if they are aware of the study results.
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PBrain...yes..the cardiologist encouraged me to exercise. I was planning on it and most of my gifts for Xmas were exercise related...so now I have to start!!! Just hope the medications don't lower blood pressure further....I already have really low BP....so will expect to feel dizzy and light-headed now. I plan on getting back my normal heart function!!!!
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Anyone have cardiac issues with the combination of left sided radiation while taking the Herceptin? I was all for the radiation but now am getting nervous about having cardiac issues or a secondary cancer occurrence. Any guidance?
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Chrissie,
I have the same concern. My surgeon thinks radiation is the way to go, as does my onc. I see my radiologist for the first time tomorrow and the heart question is heavy on my mind since my cancer was in the left breast. I have been googling herceptin, radiation to fond studies but have not had much success. My wonderful surgeon reminds me that cancer kills, radiation helps kill cancer.
Jeni
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I have the same concern. I don't know yet what the radiation plan is for me, but I'm hoping to start getting a better sense tomorrow when I meet with my BS.
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CassieCat-if your tumor was 5cm or less initially before pCR without node involvement, the graph the RO gave me states 6% risk of recurrence from a study by Mamounas EP et al, but my large tumor without complete pCR and without nodes has a 11.8% change of recurrence, and I was told chemo would drop that to below 5%. I am tricky though because my tumor was so large (bad), but my grade is 1 without sentinel node involvement or evidence of lymph invasion (good) so I was told some ROs would not recommend radiation but others would. Both ROs at my facility are in agreement with the recommendation. Poison into my body didn't scare me, but this does.0 -
Jeni-The RO told me that my SIM set-up might take longer so they can try to find the optimal position to minimize my heart risk. I have been googling the heart risk and it seems to be low like 0.5% versus the 11% of recurrence I was given. The other thing that scares me is the risk of a secondary cancer that could be more aggressive but she told me that is 1/1000 risk. Logically, it would seem the highest risk is recurrence so radiation is the way I should go. I have always been a planner so this lack of control of the variables/side effects is hard. I continue to tell myself to live in the moment and do the best I can for now.0 -
I did not do rads. My MO agreed. He thought that since chemo would get locally recurring cells as well as escapees, rads was not needed for me. (Grade 3, 3cm, no lymph node involvement). My surgical margin was ok but not optimal on my chest wall. But there was no other tissue to take, so it is what it is with the tumor positioning, Rads is aimed at locall revurrance prevention, but he thought not necessary. Bad heart issues are possible says a cardiologist friend. The position of my tumor was at 12 o'clock, (L breast) which would have meant rads would hit my heart. The other concern with rads is that if you do it before reconstruction, you may not get reconstruction, because it fries your skin. Since rads may only be done on a place once, he said we'd save it for if it was ever needed, but that time was not now.
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Hi Chrissie-
I had radiation on my left side. For chemo I had Adriamyacin, in addition to Herceptin and possibly Perjeta (on trial). So far I have had had no indication of any heart trouble. I work out, do yoga etc and have not had any problems.
Good luck!
Stephanie
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Momwriter-Thanks for sharing your story. Were you positioned on your stomach or back for radiation?0 -
CassieCat, that is wonderful news!!! Congratulations
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I had a full course (28/6) of rads to my left breast using tomotherapy . It is done face down . I was told that in most cases it spares the heart and lungs. Don't know if all insurance carriers will approve it.
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momwriter as you are on Herceptin, I'm guessing you had a baseline echo or MUGA to begin. Do you trust that cardiologist? If so, I'd ask them what they think. Maybe you should have another one run before starting the rads, maybe they will want you to get them more frequently. I'm done every 6 months (no rads, prior echo from pregnancy issues 8 years previously, so he had a prior knowledge and could see my heart was the same before I started chemo as it had been in my early 40's), BUT he agreed it made sense to move my 6 month visit up to get one in before my BMx with reduction and tissue expander recon, as that would be 5 - 7 hours on the table. If you don't feel comfortable with your cardiologist, ask your MO or BS or PS for some other recomendations.
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chrissie29 I tried to find what you were referencing, "graph the RO gave me states 6% risk of recurrence from a study by Mamounas EP et al," but I got tons of hits. Can you narrow it down some so I might find this graph? Seems Mamounas is both well published and well sited. Did this take into consideration the Perjeta, or only the Herceptin?
Also, remember if both of the ROs are at the same center, I would think they would be going through the same tumor board. You might want a second opinion from an RO that reports to a different tumor board (normally different hospital)
BTW - so get your statement, " I have always been a planner so this lack of control of the variables/side effects is hard. " Me too, hence my curiosity about this graph you referenced. All during chemo, I kept a spreadsheet of my bloodwork. Gave me something I could track.
formydaughter I didn't know this, "Since rads may only be done on a place once, he said we'd save it for if it was ever needed, but that time was not now." so thank you for sharing.
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Just heard from my nurse navigator about the path report from my lumpectomy/node removal on 1/12. Since I had locally advanced 5 cm.+, Grade 3 cancer that had spread to one lymph node prior to neoadjuvant chemo, my surgeon and RO believed that I needed to have all Level 1 and 2 lymph nodes removed. Well, it turns out that the surgeon took out 20 -- TWENTY! -- lymph nodes, none of which tested positive for cancer. Ugh. I see possible lymphedema in my future. I'm supposed to get a brochure about exercises on Monday, when I'll get my drain removed. Until then, is there some online brochure/set of exercises that I can check out? The rest of the path report was good -- the surgeon couldn't find any invasive cancer but he took out a couple of tiny pockets, in situ.
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Elaine - how many nodes removed also has to do with how many you have, we all have differing numbers. I had levels one and two removed but that was only eleven total - that is all I had. I would leave your arm quiet for a bit, and then see a certified therapist for exercises and stretching under supervision. Here is some info:
http://www.stepup-speakout.org/riskreduction_for_lymphedema.htm
Here is a graphic that shows the axilla, and it is quite possible that if you had 20 nodes removed from levels one and two that you still have a number left in level three, that will assist with lymphatic flow.
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ElaineTherese Your surgeon is dated and even then went overboard. My tumor was over 5cm as well. Back in 2010 it was standard care to take out the level I nodes even if the MRI didn't show anything. Our chances of having micromets are about 80% BUT a few years later that was changed. They do radiation instead and lower chance of LE. I had 10 nodes taken from the cancer side. My BS took level 1 but would have taken level II if he saw the need when he got in there. He didn't. I do have mild LE that I manage with no issues. I do wear a sleeve every day though.
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knm, I kept a spreadsheet of my blood counts too and even tried to start predicting what my counts would be cycle to cycle, one week after each cycle, etc. Anything to try and make sense of gain some feeling of control and understanding.
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Elaine - in the 70's my mom had a radical mastectomy, breast, muscle and all lymph nodes that they could get. She died in 2006, never having any lymphodema, so... it is not a given. When you start thinking about getting them, use her as your positive thought. BTW - her breast cancer never came back either.
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