TRIPLE POSITIVE GROUP
Comments
-
Eily - Her2+ cancer is aggressive but Herceptin is very effective against it. Before Herceptin, Her2+ breast cancer had a horrible prognosis, but prognosis these days is much better, and prognosis is better for triple positive than for HR-/Her2+. Did your onc say it wasn't aggressive or that your prognosis is good? Because both of those things are true.
SpecialK - glad to see you back!
umakemehappy - I would think you could get breast MRIs instead of mammograms, considering you have dense breasts and have already had breast cancer. Also, MRIs do not use radiation. Ask your MO about that. It could be that your insurance won't cover it, in which case you could pay out of pocket, or it could be that your doctor has a mammogram machine but not a breast MRI machine, in which case you should just switch.
Hope the rest of you are doing well. I'm in Houston, did rads #6 today (of 30) and am a hot mess of marker, tape, and mepitel, which for reasons I can't understand is sticky on BOTH sides. Can't wait to go home this weekend for some sexy time, lol! I hope my husband doesn't get stuck to my chest!
0 -
Hi hapa, thanks for the reply,
Yes, she views HER2+ as an agressive form of cancer and I had known that and realized the Herceptin is effective. She didn’t feel because I also had ER/PR+ that it was more agressive.
Between the size, being post menopausal and allmy treatment.. she felt my prognosis was good. After seeing her 2 weeks ago I finally relaxed a bit and put the “aggresive” word away. So i guess I was a little surprized to read it.
Thanks again. I’m nearly finished my Herceptin (3 more) ...I’m in Vancouver Canada.
0 -
I just want to add my name to the chorus of voices who noticed SpecialK´s absence and were missing her voice. Welcome back and sorry you are dealing with teeth stuff. I already said but I will say it again: I love to read your posts and I am very thankful for your presence here.
I need to go to the dentist too -I have a lot of little things that need fixing so who knows what they will find
Best to all....this thread moves so fast I get lost. Going for second mastectomy the day after the election.
LaughingGull
0 -
Suburbs I have dense breasts and I have known that for a long time, as a matter of fact i followed up with a breast cancer surgeon, who checked my breasts for 12 solid years prior to cancer. He has more degrees than a thermometer. Harvard, Columbia, Sloane-Kettering....you name it...Nothing ever showed up in regular mammograms, ultrasound, exploration by the experienced cancer surgeon or 3d mammograms. I found my cancer once it had already spread to my lymph nodes. Once I had cancer, we also learned that it didn't show up in MRI either, so MRI wouldn't have helped.
0 -
hapa: thanks for the suggestion of MRIs. I looooooove the idea of imaging without radiation. However, I strongly dislike the idea of waiting after each one to hear my results (I always go straight to the death sentence). And also, should there be anything, I strongly dislike the idea of doing treatment ALL OVER AGAIN. Have become distrustful of my boobs, and am getting used to the idea of sending them packing.
My sister, who is 4 years younger and also just found out that she too has dense breasts, just got approved for additional imaging based on my diagnosis. After a biopsy in December that turned out ok, she will now go in next week for an MRI, then 6 months later another mammo, then repeat every 6 months back and forth. Her primary care dr. told her that thanks to me, she now has a 30% chance of getting breast cancer. If that's so, seems to me I have at least that or more of getting it again. (My mom and I both tested negative for the full panel of BC genes.)
0 -
Hugs to SpecialK from another person she gave so much info to early on.
I am hating all the tooth problem chat. At my last cleaning they said I had some kind of gap behind one tooth and I got a referral to a periodontist to have it looked at. I think the gentlest fix would be to zap it with a laser to clean out the bacteria (?) but I’ll know more in a few weeks. I’ve had so much dental work done over the years—I have nightmares about needing to get dentures.
On the good news front I just got back from a long weekend at Disney World—kind of an almost-end-of-treatment celebration. :-
0 -
Ingerp, that trip must have been wonderful! I remember you planning it from the summer at least 🙂 glad you enjoyed yourself
SpecialK, welcome back from your various trips, what an active October you've had! So sorrry to hear about your dental issues.
One of my teeth is hurting on and off for weeks... I wonder whether I should go the dentist or not, in the middle of Taxol... It will need complete re-do and take more visits. I don't know if I have any strenght for another set of doctor appointments. Especially when the pain is not constant
Oh and I went to the onco-psychologist and found the visit very very helpfull. She said we will need some more work together (I'm a wreck it's what she probably meant).
0 -
Hi- I am new to this site...and new to cancer. what is ER/PR/HER? and I see a bunch of detailed things under people's post...what do they all mean?
0 -
Marion, my onco gave me Taxol and Herceptin. Taxol is gentler tha AC. My onco showed me a study when he suggested it that indicated it was a good fit for the cancer I had. Triple positive is very aggressive! Also, ask about doing only Herceptin. I have heard that some people have gotten approval for that route. You might supplement with cbd oil. Let your onco know what you are doing. I considered the same thoughts you are having. Chemo is scary. In the end, Mets seemed scarier to me
0 -
Sunny outside, This link will help.https://community.breastcancer.org/forum/131/topics/773727?page=#idx_1
0 -
Good Morning.
I have had dense breasts all my life (up to now, LOL). Years ago (before some of your were here on the planet) a radiologist recommended a mastectomy and implants. I was in my early 30s. I laughed. He said "these breasts will give you trouble all of you life." Wish I had listened and implants were not as perfected as they are today which affected my decision then.
About our teeth ... I wish all Oncology Teams would say go get your your teeth clean and then share a breast cancer diagnosis. I have started using a prescription toothpaste. Who knew there was a prescription toothpaste?
It is Colgate PreviDent5000ppm. With my insurance I paid a little under $15.00. I use it only at night. I have all crowns on my back teeth.
umakemehappy ... Follow these links before you confirm a BMX.
At this link:https://community.breastcancer.org/forum/91/topics/851551?page=1#post_4874453
In this topic: Lumpectomy or Mastectomy - How did you decide?
Forum: Surgery - Before, During, and After
Look for: Jan 2, 2017 10:51AM ruthbru wrote.
Then scroll down and read the update:
Regarding Beesie's post copied over by Ruthbru above, please note that Beesie recently issued an update on Sep 15, 2016 that can be found here:
Lumpectomy vs. Mastectomy (Invasive disease):
https://community.breastcancer.org/forum/82/topics/848049?page=1#post_4802494
I understand what you write. Just consider the impact.
Warmly,
0 -
coackvicky, thanks a lot for the info and the links. In our mind, the difference of recurrence rate between lumpectomy and mastectomy is the one we are debating most. I was wondering if there is any statistics for early TP BC (with nodes clear).
0 -
sunnyoutside - breast cancer tumors can have receptors that are fueled by hormonal factors. The ER stands for estrogen receptors which are on the breast cells and, if present, allow estrogen to accelerate tumor growth. If the tumor has them your pathology report will show ER+. Also potentially present are progesterone receptors - that is the PR+. Approximately 80% of breast tumors are estrogen fueled. If receptors are not present, you see ER-/PR-. Her2 is a genetic aspect of some breast cancers, approximately 20% of those diagnosed with breast cancer are Her2+. These tumors are usually more aggressive and faster growing because the normal genetic expression is exaggerated and causes the tumor to grow in an accelerated fashion. The most common arrangement of hormonal receptors and Her2 status is ER+/PR+/Her2-, but there can be any combination of these three aspects ofthe tumor. Those of us on this thread are positive for all three - ER+/PR+/Her2+ and we represent a minority subset of breast cancer patients. The good news is that there are drugs that can combat the hormonal aspect and Her2 aspect of our type of breast cancer.
0 -
All the statistics in the world will not matter unless you have peace of mind. That is what will give you strength on this journey.
However, if anyone can answer your question it is SpecialK!
Vicky
0 -
I just saw the article below online. It seems to say for her2+, there is less chance for local recurrence? So could that influence people on the decision for lumpectomy and mastectomy? I chose lumpectomy because I have young kid and need to recover as soon as possible. I sometime doubted my choice but I think I chose the best for me at that time.
https://www.itnonline.com/content/researcher-inves...
0 -
Thanks all for missing me and for the encouragement for the dental issues - I am hoping for the best!
coach - thanks for the shout-out, lol!
lilyCh - here is a link to a previous post regarding surgery decisions. In the first link, see my post on Sept 18, 2018 - it contains several links to information that may help. Also below is an additional link.
https://community.breastcancer.org/forum/80/topics/764183?page=1209#post_5279760
0 -
coachvicky, thanks and yes, "peace of mind" is the key.
While we are waiting for SpecialK to give us answers
, I found the following articles (https://www.healio.com/hematology-oncology/breast-...) and it says:"Modern therapies minimize recurrence after lumpectomy...
The analysis included 6,927 women diagnosed with stage I to stage III breast cancer from 1997 to 2011 who underwent lumpectomy and modern-era radiation and chemotherapy or other systemic therapies...Researchers observed a 5-year local recurrence rate of 4.2% (95% CI, 3.7-4.8) among women who had breast conserving surgery and modern-era therapy....
Recurrence rates appeared lowest among women with triple-positive breast cancer(3%; 95% CI, 1.9-4.8) and highest among women with triple-negative breast cancer (6.9%; 95% CI, 5.6-8.4)".
Are we all using "modern-era" radiation now? Is using HP for TP BC considered as "modern-era" and "systemic" as well?
0 -
LilyCH: My surgeon told me that the recurrence rate for LX vs. MX was ....I think 5% vs. 2%? Something like that. At any rate, I'm a big numbers person and the numbers she gave me were so insignificant that I made my decision right then and there. And as you know, I had lymph involvement as well. I'd ask your surgeon but honestly I'm sooo glad I went with the LX. Back to work tomorrow, exactly 1 week post-op. Of course, I'm a tough ol' broad so probably an outlier on that aspect lol. I'm sorry, I've forgotten...when is her surgery?
0 -
SpecialK, thank you, so informative. By the time I had the last post (regarding waiting for your answers
), I did not realize you had already provided the answers and funny enough the link I included is the same one you provided in the original post (on 09/18/18). Thanks a lot again.0 -
Kat22, your altitude and mindset are great!!!
.Surgery date is not determined yet, hopefully we are going to get it set when we see the BS next week. We have not seen the BS since the beginning of TCHP but through e-mail exchanges during the infusions, he assumed we are going to do LX. During the post infusion check-up after the 5th one, the MO also said it is really not necessary to do MX. I am just doing "extra" research before making the decision.
0 -
THANK YOU !!!!! all for all the great informational links and viewpoints!! I will look at each and every one tonight. Just wanted to pop in quickly to add that my dr. assured me that recurrence rates are pretty much the same for lumpectomy and mastectomy. But with dense breasts, my biggest worry is a NEW cancer.
In any case, I clearly need to do waaaaay more research, so thank you all for all the info. I'll feel well-armed when I meet with my surgeon who I'm betting is going to do his best to talk me out of further surgery! ; )
0 -
Hi Ladies,
I want to thank you again for all of your kind words, advice and encouragement. Although I don't always respond, I have my notifications on, and I'm always reading and updating myself. I truly appreciate it.
Update: I finally finished my 6/6 neo-adjuvant TCHP infusions last Thursday. Still currently recovering, but I'm taking in the small joy that this hump (or should I say lump soon?) is over (hopefully for now, and forever). Had to go in for extra fluids after infusions 5 and 6 because overcoming the effects of 4 was a nightmare. Going in for surgery in 2 weeks. The speed of which everything happens is both comforting and daunting.
I have a pre-surgery (plan is lumpectomy and removal of nodes) meeting next week, and a meeting with the radiation oncologist. I'm doing as much research as I can without scaring myself, but from any of your experiences, do you recommend any specific questions I should be asking to these doctors? Any advice, as always, is very welcome.
Thank you again, and I hope you're all doing well!
0 -
Hello, I'm new to this board.
My mother was diagnosed with Stage IIB triple positive breast cancer last week at age 65. She has a 2.2 cm tumor in one breast and about 3 - 4 affected lymph nodes. She's not much for internet research or even support groups, but I am very eager to learn as much as I can for her and to help in any way I can.
I understand that her surgeon has recommended chemo, then a lumpectomy, followed by radiation and hormone therapy for 5 years. She has her first appointment with her oncologist next week. I was wondering if anyone could shed some light on what to expect and what questions she should be asking at this point. My research tells me that triple positive is somewhat rare and a little bit different than any of the other types
I appreciate any input, and my prayers are with everyone on this journey.
0 -
xYoungandscared:CONGRATS on finishing chemo! The one thing that really stood out to me, and wasn't fully explained until right before surgery: My surgeon told me that she would remove 3 lymph nodes, biopsy them while I was on the table, and if any remaining cancer was found she would remove ALL my lymph nodes and I would have a drain. If not, she would remove only the 3 (which is what happened, YAY!) After spending so much time here, that surprised me. I'm sure I've seen posts that women had 7 or 8 or 10 removed. The "all or nothing" approach may be unusual? I would ask your surgeon in detail what his/her plan is re nodes. Good luck!
(The first thing I asked in Recovery was "do I have a drain?" I figured that would be the quick and easy way to know how things went)
0 -
KBM_219, we welcome you our community, and are sorry that you and your mom have to go through this. Here is a link on what to ask your doctor about the diagnosis and Talking to your doctor about chemotherapy that you may find helpful.
We hope you find answers and support here at BCO!
0 -
KBM 219 - welcome. Your mom's diagnosis sounds a lot like mine. My doctors - 3 different ones - told me that as a triple+, I have multiple targets and they have excellent silver bullets. Even though the 1st round of chemo was very rough, I am getting through this. I had a lumpectomy, port placement and have started the first round of chemo. The articles that are mentioned above are good. Your mom is lucky to have you. It's a long road, but with support and care, she can survive this. Stay in touch.
Annie
0 -
Hi KBM219, glad you found our group but sorry you and your mom are dealing with this. I was DX in August With triple positive BC, below is my info on DX and treatments. I was immediately put on new-adjunct therapy with TCHP, (chemo (taxotere and carboplatin), and targeted therapies to deal with HER2+ receptors. (Herceptin and perjeta). They wanted my to do neo-adjunct first before surgery due to aggressiveness of the cancer. I was DX with two tumors but later found DCIS also. I'm tentatively scheduled for UMX late January, and as long as no nodes are compromised I will forgo radiation. All screens so far indicate nodes are clean. I was scheduled for 6 chemo and targeted treatments, TCHP, every three weeks and today I have my fourth infusion. It is tough as everyone states but you can get through it, just make sure you have a good relationship with your Healthcare doctors, after chemo I continue with Herceptin and possibly perjeta for another 11 sessions and they will add additional medication for managing the hormone receptors, I will take that from 5 to 10 years.
Remember though, not all patients are getting same treatment so do your research and make the best decision for you and your mom
This is a long process but with family and community support you can make it through. We are all here for you. Take care.
0 -
I see we are on the same chemo regimen TCHP, after one infusion I had a really hard time, day 7 today hope it’s turning around. How were your SEs
0 -
Good Morning All,
I am saddened to see so many new women in this forum yet know in my heart each of you will find love, support, comfort, and technical help here.
Yes, that first round of chemo (whatever it is) can be rough. As I have written before, a friend emailed the morning after my first infusion. I had my laptop in bed awaiting a day of chicken pot pies (double crusted), HGTV, and rest. She wrote, "I hope you are up and moving. You must move to get the chemo thru your body or you will be sick." I was not happy with her advice, LOL. My husband reminded me that all our friend wanted to do when she was told she had cancer was to see her children finish high school. Today her children all have advanced college degrees. He said that she probably knew what she was talking about.
So I got out of bed and hit the treadmill and did so no matter how crappy I felt. I truly believed that moving made my chemo bearable. At least it gave me "control" of something.
I encourage all of you to move. Move as much as you can. If it is a trip every hour to your mailbox and back, do it!
And as Special, Suburbs, ElaineT always write: Hydrate, Hydrate, Hydrate.
One day you will look back at how far you have come and how strong you have been with awe of your ability.
Vicky
0 -
How soon after 1-year herceptin typically do you remove the port? My oncologist thinks it's only trouble to keep the port in. Nurse told me it needs to be flushed once every six weeks. My last herceptin will be in early December. I'd like to keep the port just in case.
0
