ER-, PR-, Her2+ Roll call
Comments
-
hi Jo - everyone is different and will have their own opinions so I will not encourage you either way.
I am 37 and had a very aggressive tumor - ER-/slightly (4%) PR+ and her2+++.
I also had it confirmed in my lymph nodes. i did chemo first and had a BMX and did not look back. I also decided to not have reconstruction. There are a few threads here and a facebook group called "flat and fabulous" that helped answer a lot of questions for me. It's not for everyone, but if you are just curious or information gathering it's might help.
KEep us updated please!
0 -
My friend had a lumpectomy in 2002 with lymph node involvement. The cancer was very limited in the nodes. She received 38 radiation treatments. Still No reoccurrence in 15 years. Yes, it can happen. Be strong
0 -
Thanks a lot. I will check out Flat and Fabulous. Thank you so much for providing concise and clear information. I appreciate it very much.
0 -
Hi Jo6359,
This is such a personal decision and a very very difficult one to make for some I completely understand your struggle. I’ll share mine. I am 34 years old was just diagnosed in November and I immediately knew that I would want double mastectomy from day one, with reconstruction. My tumor is 3.2cm which is large but doctors recommended Chemo first to shrink it then surgery. But given my young age I just don’t want to be living in fear and freaking out 24/7. I know that there are always possibilities But if Ican help it in any way then I want to be able to do that so that I can live as long as I can without this. I'm always going to worry about a reoccurrence but will pray it doesn't happen but the reason for a double instead of single is Bc I don't want to think of having to deal with the left breast later on. I know I'm going to be I pain after surgery so might as well do both and might as well do the reconstruction too while I'm there lol and obviously due to age too haha.
Anyway that's it I hope and pray for you to make your decision and hope you don't have to stress about it too much longer.
0 -
I had highly aggressive IDC in my right breast, with a tiny spec in my left. My choice to get a BMX was mostly because I never ever wanted to worry about what a mammogram might show later on in life.
I opted for reconstruction. Implants were never a thought for me, partly because of the cold here in the Northeast and partly because I thought they would look weird covered by nothing but a thin layer of skin. (Implant materials never get as warm as your body in the winter.)
I found a procedure called a DIEP Flap, which took my belly fat (and a long abdominal vein), and created a pair of breasts that look and feel shockingly real! The procedure requires a vascular surgeon, so only large metropolitan areas seem to offer it. (I've driven the ~10 hour roundtrip to NYC, and used charitable coach and air options at various times since my main surgery in Aug 2015. Angel Flight and Hope Lodge were total godsends!) Mastectomy and reconstruction happened during one long visit to the OR: so it had one (2-3 month) recovery period.
During one of my follow-up visits, I spoke with an older lady who had one mastectomy and reconstruction a decade ago, but ended up with a recurrence in the other breast last year. She said she wished she had gotten them both done at the same time "because they'll never be a perfect match"; but it would've been considered elective surgery, and would therefore not have been covered by insurance in the pre-ACA era. So if you're even halfheartedly considering reconstruction in one breast, that might be something to think about.
0 -
I have read all of the comments RE: single vs bilateral masectomy. Thanks to all of you for your support and sharing your stories. I made the decision to have a BMX. I met with a plastic surgeon today to review pros and cons with reconstructive surgery. My opinion hasn't changed. I really dont want reconstructive surgery. I went to the site flat and fabulous. When its time, I will purchase a masectomy bra. Reading your stories has helped me stay in the moment. I have to start making arrangements to board 2 of my dogs while Im in the hospital. My friends are great but they are scared of the above mentioned dogs. They will take care of my other dogs and cats. I have too many pets. Thanks again
0 -
jo6359 if you are having any doubts remove one and plan bilateral with reconstruction in the future. Once you remove your breast you can’t put it back on. However, reconstruction is better immediately after mastectomy because there is more tissue available. If you need any local radiation that changes everything too.
0 -
Also, just to give you all hope! I was diagnosed stage 4 right from the start! Now 2.5 years later and after 43 doses of H&P and local therapy I got my latest CT scan results, “No evidence of metastatic disease.” These drugs work, I am very grateful and blessed!
May we all have very long promising futures! Try not to worry, one day at a time and it will get easier
0 -
jo - you made your decision about BMX and I think it's a good one. Don't start to second guess yourself every time you turn around. Reconstruction will always be covered down the road if you decide to go that route after living with flat for several years.
0 -
minus2 and bstein, Thanks for your feedback. I feel comfortable with my decision. You do a good job of putting everything in perspective. Best of luck to both of you as you deal wuth your own issues. Many thanks
0 -
Hello MinusTwo- Im still confused. My initial dx was 1. 2 cm tumor IDC R breast. My SO was planning lumpectomy and MO Chemo and Herceptin post surgery. Two weeks later is when they found the second tumor in the same breast same size IDC. Instead of a lumpectomy went to a double mastectomy but my MO is still waiting to do the chemo and Herceptin post-op. Clean PET. Ither than CA no other healrh issues my concern is several of you on this thread are quite adamant that chemo and herceptin is prior to surgery. I did call and he said because the tumors were small chemo could wait. My concern is my surgery is January 29th and that's will be the first day I receive any type of treatment. I'm not sure where I go from here. The navigational process post diagnosis is something of a nightmare
0 -
jo - each one of us is different. There is no 'one treatment fits all' with cancer - even with a similar diagnosis. Every doc has his or her own protocol based on his knowledge and experience and your individual pathology. I am not a doctor and would not presume to prescribe treatment. The most important thing is that you trust your health care team. If you have questions, you can certainly get a second opinion before going ahead, and most doctors would support that. Otherwise this darn disease allows us to research forever, but eventually it comes down to trust. I'll keep you in my thoughts going forward.
0 -
Jo: Those of us who received chemo prior to surgery had larger tumors.
0 -
Thanks. I kept reading standard protocol for HER2+ and began to worry. You are correct, trust in your Healthcare team is very important. I don't have that trust in my team yet. Both my SO and MO have excellent reputations. My Cancer Center is located in a major metropolitan area. I appreciate your feedback. I haven't resorted to doctor Google in over 2 weeks. You are right this disease can be researched until no end. Today was just a really bad day. Making preparations for my surgery brought me down today. I'm going to meditate now and refocus my energy. Tomorrow's a new day and it will be a better day.. I ran a 5k yesterday and that felt really good and normal. I want normal back in life and not all this uncertainty and fear. I need to send some positive energy towards our surgery sisters today.
0 -
Chemo is recommended first when the patient qualifies for Perjeta. I believe insurance approves Perjeta only when done with chemo prior to surgery, but is not always approved if the tumor is small. Perhaps you could ask about this you mo. Herceptin and Perjeta together are more effective than Herceptin alone.
0 -
Thanks DATNY. I'm going to call my Mo tomorrow. I know I cannot speak to him directly but hopefully I'll I will be able to reach an oncology nurse.
0 -
I had my BMX first then chemo......TCHP. Initially they thought my tumor was small based on the biopsy and MRI. Instead it was 6 cm. I asked about chemo first because I was also concerned. They told me it really didn't matter unless you were trying for a lumpectomy. I believe every case is different and it is important to listen to your medical team. jo6359 where in FL?
0 -
I live in Miami. I live it here. My hosputal is Mount Sinai Cancer Center.
0 -
my surgery is scheduled for January 29th BMX + SNB + Port. Chemo will start Feb. 8. My Mo informed me today. I will start taxol once a week for 12 weeks and herceptin every 3 weeks for one year. Thanks so much for sharing your experiences. It gives me a better idea of what to expect in the near future. Soon I will be Flat and Fab. Bald and Beautiful might be my new mantra. No reconstruction and no wigs ( if I lose my hair). Miami summer weather is too hot for a wig. Its 55 degrees today with blue skies. I know several ladies who went through taxol and they did not experience any hair loss. So there are still a few Miracles out there.
0 -
Dear Jo, good luck with everything! The chemo seem to be on the lighter side. If you haven't got a second opinion, I just wanted to mention that Dana Farber, one of the most prestigious cancer treatment center, offers remote second opinion:
https://www.dana-farber.org/appointments-and-secon...
In my case I went there in person, even if I was treated by one of the most respected mo in my area. In fact, my mo encouraged me to seek a second opinion from them, although he acknowledged that my local center follows similar standard of care with Dana Farber.
The doctor at Dana Farber gave me two lines of treatment. The first chemo wasTaxol and Herceptin, followed by surgery, followed by AC, then 1 year of Herceptin. The second option, which I chose because of lesser potential side effects ( A can cause cardiac toxicity) was TCHP +surgery +Herceptin. The second one was the only recommendation of my mo, who acknowledged he prefers this regimen because of potentially less complications later on.
0 -
DATNY What is TCHP? My MO is Chair of a major cancer center but I like your suggestion of a second opinion. Right now the plan is: BMX, SNB and Port followed with Taxol 1xwk/12wks and Herceptin every 3wks for 1 year. I would like a second opinion before my surgery on the 29th. After the surgery I'm not going to have the time nor the energy to go for a second opinion before my chemo starts on the 8th. The second opinion is something I should have dealt with much sooner.
0 -
TCHP = Taxotere, Carboplatin, Herceptin and Perjeta.
AC = Adriamycin & Cytoxin. Taxol is a lighter version of Taxotere.
Normally Herceptin is not combined with Adriamycin at the same time since both can cause heart issues.
Herceptin does need a 'tax' infusion to jump start it's benefits.
By all means, get a second opinion with a medical oncologist. You have time and it will help you feel better about the path you are choosing. Note - not a second opinion with a surgeon - go to an oncologist.
0 -
Jo,
Just found your post; haven't been on the forum for a while. My MO is with Johns Hopkins and was recommended to me by folks in the chemotherapy drug industry and she prescribed 12 weeks of Taxol and Herceptin, followed by Herceptin every 3 weeks for a year. Taxol doesn't have the heart effects that some of the other drugs do which is important when taking Herceptin. As long as you receive at least 8 doses of Taxol during the 12 weeks my MO said that's enough. The Taxol is like a booster for the Herceptin. I've got one more weekly infusion, then I switch to every 3 weeks. I haven't been able to take a Taxol since Jan. 8 due to neuropathy, but I've gotten my 8 doses in, so I should be good to go.
0 -
ExTexan-Thanks for the reassurance. There is so much to learn about breast cancer. At times, I am overwhelmed but overall each day is better. I really enjoy hearing the positive feedback from the January surgery ladies. Being a hormone negative and her2 positive causes me a great deal of concern. From all the feedback I have received the her2-positive is very aggressive. So right now I'm focusing on learning as much as I can but staying on the positive side.
0 -
First chemo treatment in the books! Yesterday! TCHP. Thankfully, no adverse reactions to drugs. Neulesta pod injected correctly tonight so am expecting bone pain tomorrow or next day. Any suggestions?
I pray for all of us every day.
Carol
0 -
Carol - if no one has mentioned it yet, you should start taking regular Claritin the day of chemo and continue for several days after the Neulasta. (not the "D" variety) It helped a lot with my joint & bone aches & pains.
0 -
Hi Fellow Warriors- I am still here, still healthy, still No Evidence of Disease (NED)- had a recent scan, all clear. YAY!
I hadn't logged in for awhile but just wanted to share for motivation for those going through the chemo and surgeries and radiation now. It all SUCKS but hopefully is just a really bad year or so of your life and then you can start getting back to normal.
Please keep your courage up and take care of yourselves. Rest as much as you can. Remove stress if you can.
Stay strong girls!!!!
Hugs,
Jan
0 -
Thanks for posting! I needed this tonight
0 -
Sciencegirl-thanks for sharing good news.
0 -
Yay Jan! Thanks so much for this motivating post!
I just finished my 4 rounds of AC. Headed to surgery Wednesday and then Taxol + Herceptin, then, etc. , etc. I’ve had a great response to chemo, and as upbeat and positive as I am, I have my moments, as I know we all do! It’s tiring to rest so much when I have no other choice. 😊. I’d love to hear more about the Taxol + Herceptin phase...
0
