TRIPLE POSITIVE GROUP
Comments
-
lilych, yes MO examined after each infusion and it really couldn't be felt after the 2nd Infudion. I had Lobular and not Ductal and it does not show up well on MRIs so I'm now told. It didn't show up at all so they had to use my original sonagrsm for the lumpectomy. When I had my BMX the pathology came back no cancer found on my cancer side but precancer on my other side, which also did not show on my MRi and obviously was unaffected by any chemo.
So I guess they got it all on my lumpectomy just no clear margins, but it was still there after chemo.0 -
xYoungandScared, I think we all understand your anxiety and disappointment. For triple positives, a pathologically complete response is not the norm from neoadjuvant TCHP. You still have another round to go and chemo is cumulative. I had an MRI which showed some reduction after the 4th TCHP and two months later my post surgical pathology report showed no evidence of any cancer cells. Chemo is cumulative. The last cycle is the toughest. Hang in there. Until your final surgical pathology, you will not have a complete understanding of your situation. Please give it some time. We will all be pulling for you. Please post often. We understand your fear
0 -
Hi again. ElaineTherese, Coachvicky, hapa, LaughingGull, and deni1661, thank you for your support. I’m still circling the airport and taking two antibiotics. I’ll have imaging in a few weeks which I hope will show that I have kicked this demon infection to the curb. I’m still ok with my decision to do immediate reconstruction even though recovery has been a bear. If I’d gone with implants, I would have had to deal with expanders and fills and exchange and removal, so I’m thinking I am still ahead of the game. For anyone else, fear not. I am the exception, not the rule. 😀 Happy Friday everyone
0 -
Great posts, Suburbs.
I love your line "... fear not. I am the exception, not the rule."
If I have learned one thing from the 3+ posts, there may be some similarities among us and there is no one "rule" that fits us all. I understand the fear and disappointments as much as I can. I think reaction, fear, and disappointment is different dependent on where we are when we hear "it's breast cancer."
I am off for my six month oncology appointment, Will share how it goes.
Vicky
0 -
I was glad to get a port but it took me a while to adjust to it. I can feel it a bit in my neck and it limits my range of motion...the incision from my first port healed wrong and I had to have the port replaced, and they might have to remove this one during my BMX due to it's location, but I typically have bad veins and would like to keep it through the reminder of my targeted therapy.
0 -
we get Herceptin as an injection here, not I.V. ... that's why I'm hoping I will manage through chemo without port...
0 -
just chiming into to say I loved my port, and I was terrified of putting it in. But i was so glad to have it, I'm a terrible stick. I have weird scars now that i dont like on my chest/neck, but oh well.
Like Vicky, i knew that if i didnt do chemo, and the cancer came back, I could never forgive myself. I would always blame myself. I also had two little kids I wanted to see grow up.You have to think about how you will feel, each person is so different. I did it, and it wasn't that bad. And I was allergic to the chemo! (Which is a very very rare thing to happen. No worries!).
Hugs! These choices are so hard...
Tres...
0 -
I wish we got herceptin injections here too. It would be faster, cheaper, and I would have had this stupid port removed during my BMX.
0 -
I didn't know Herceptin can fit in a syringe. My Herceptin drip is a 30 minute IV.
0 -
xYoungandScared - My tumor was 3.6cm. Halfway thru chemo, MO couldn't feel the tumor so she wanted to insert a metal clip on the tumor site so that the BS can identify when performing surgery. The doc that inserted the metal clip (via ultrasound) told me that tumor still around 3cm. I was devastated but MO said "don't be discouraged, it may be just scarring - dead cells". My post surgical report was "good, near complete reponse, with isolated tumor cells in 1 of 2 lymph nodes.
0 -
Hello Ladies.
Hi young and scared, don't stress about the tumor not responding well to chemo. I had the same issue. My tumors only become spongy and a bit reduced in size. MRI confirmed it before the surgery. Sorry I have difficulty remembering the figures right now but my surgical pathology said clear margin after MX.
So just like others have said, only a surgical pathology report will give you a clear picture of what you are dealing with.
To the lady contemplating port, I don't know if I would have survived without a port to be honest. It has been a breeze with it, I don't even feel the needle go in because of the cold spray. I have extremely tiny veins so it would have been a struggle literally. Now I don’t remember having it unless I touch it or look in the mirror and it will be a year in 4 weeks.
Best of luck with whatever you decide to do, we will be here to cheer you on
0 -
WC3, I think it's given as an subcutaneous injection in most of Europe... People here tell me it's quick and they were out in 5 minutes.
editing to add - now I'm getting Herceptin as an IV with Taxol every week. I will be switched to the H. injection after Taxol, so I don't know yet what does the injection feel like
0 -
Hi everybody. I had a few links saved on neoadjuvant chemo which cover some of the things we TPs deal with.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4961053/
Women with triple-positive breast cancer — that is, ER–positive, PR–positive and HER-2–positive — traditionally have a lower pathologic complete response (pCR) rate to neoadjuvant chemotherapy with the standard of care, which is TCHP. .
http://ascopubs.org/doi/abs/10.1200/JCO.2016.34.15_suppl.500
I definitely went down the rabbit hole questioning and researchingduring chemo as the steroids destroyed sleep. We all deal with this information differently. Hope this helps.
0 -
Good morning everyone.
Suburbs, i was thinking of you the other day. Hope you infection is getting better.
I did not get a port. I had 12 taxol with Herceptin and perjeta, 4 AC then herceptin for a year. They had no problems finding a vein until the last 2 months. Now when I have surgery they numb my entire arm. Start an IV to relax me then stick me a different spot. Sucks.
I have had a hard last couple weeks. I have this woman I thought was a good friend. We had gone out for a couple drinks one day and I was talking to her about how the month of October gets stressful. She asked what I meant so I explained that with all the breast cancer awareness and all. Her answer..... Get over it, it's done and she's tired of hearing about it. Wow. Ok another friend gone. I have no time friends like that.
But i got a new tattoo yesterday.
0 -
Great tattoo and quote, shelabela!
Went well at the Oncologist's yesterday. I got the "pep talk" about how staying the course leads to the words "you're cured." Lots of encouragement on my exercising and so forth. I felt sorry for my MO in that he probably has to repeat this talk often when a 3+ woman questions continuing. He did a lot of teaching in explaining why being estrogen positive is good. He said that means the estrogen in cancer cells are like estrogen in normal cells thus responding to a blocker such as Arimidex. With estrogen negative, the cells do not respond like a normal cell. He just made it sound so very clear. He was pleased with the effects of the Prolia injection. I will continue that as well.
Have a great weekend every one!
Vicky
0 -
coachvicky, I take foxomax for my osteoporosis, are you takng anything else with the prolia?
0 -
0
-
Hi coachvicky, I take calcium and D along with Fosomax. I was interested in the prolia injection you mentioned because there are issues with fosomax causing fractures, the research seemed to show fewer SE with prolia. Has prolia been approved, the limited research I did seemed to say it was still in trials. I'm concerned because with steroids, and the soon to be added AI, I need something to maintain or build bone.
0 -
MACTAZ,
Here is a link to the approval history of Prolia: https://www.drugs.com/history/prolia.html
My last bone density results (August 2018) showed an improvement from the initial (August 2016) after 2 injections. I would not attribute all of the improvement to only Prolia as I have made life style changes.
I realize that some women experience side effects with Prolia. The only side effect I have had is ripping off the horrid band aid my center uses. I am due an injection on Monday and I am taking my own band aid!
As the 3+ journey is at least 5 years of AIs, I think that I personally require the Prolia to ensure I keep my bones as healthy as possible. I realize everyone has to take what is best for them.
I bet SpecialK can add some clarification to this.
Vicky
0 -
thanks coachvicky. I’m very concerned about bone density as I was diagnosed with a decline about a month before diagnosed with BC. I had started Fosomax about 2 months before any cancer treatment started. I,m going to talk to my OC about prolia and thanks for the info. I will look into it.
0 -
shelabela I love the tattoo! Sorry about your friend, I'm lucky that nobody in my life has been so insensitive (yet).
0 -
JaBoo:
You are right. There is an injectible form. I will have to see if it is available here in the U.S.
0 -
Shelabela, you are right to say good riddance to such negativity from anybody. Nice tattoo, how big is it? The pic looks like a square foot of your shoulder! Love the sentiment
0 -
Jumpship,
I had an episode of endometrial thickening before being diagnosed with breast cancer, a biopsy came back as "tissue compatible with polyps", then a hysteroscopy found no polyps. It was terrifying. After being diagnosed with BC six months later, when the time came to start hormone treatment, I decided to get an oophorectomy and aromatase inhibitors instead of tamoxifen for that reason. I didn't want to deal with the terror of another gynecological cancer. I was 48 at the time. The surgery was very easy and I am doing great under the aromatase inhibitor. How old are you? Did your ob recommend oophorectomy too? My friend who had an episode similar to yours was recommended both hysterectomy and oophorectomy (she was 45) but she is in another country.
LaughingGull
0 -
Hi everyone,
I posted this under the surgery thread hoping to find someone who had similar results but haven’t had any responses yet. I’m reposting here, hoping there will be some women here who had similar results under the triple positive group that can give me an idea of what to expect.
Hi all,
I had my lumpectomy this past Wed and my pathology came back on Saturday (yesterday), but I haven't talked to my surgeon or oncologist yet. It showed my pathologist had concern that there weren't clear margins, my nodes were negative (they took 4) but I had extensive lymphovascular invasion. It listed many things from many different slices, but an example of what it showed for each slice is: INVASIVE MAMMARY CARCINOMA, NO SPECIAL TYPE (DUCTAL), MSBR GRADE 2, RESIDUAL DUCTAL CARCINOMA IN SITU, INTERMEDIATE AND HIGH GRADE, DUCTAL CARCINOMA IN SITU, etc.
I was originally diagnosed with triple positive so I had Neoadjuvent TCHP before surgery, with a plan of radiation after surgery, then 5 years tamoxifen and then 5 years of the post-menopausal drug. This pathology still shows triple positive, but it showed the HER2 was equivocal, so they did a DUAL ISH test and it said it was positive for amplicfication with a 3.3 ratio, ki-67 was 28% and ER & PR were both 87%, 2+.
I'm assuming at some point next week, either my surgeon or my MO will call me to speak with me, but I'm guessing they will want me to have further surgery since the pathologist stated she was concerned about the margins "... GIVEN THE DEGREE OF TRANSECTION OF INVASIVE TUMOR AND DUCTAL CARCINOMA IN SITU AT WHAT IS DESIGNATED AS THE SUPERIOR MARGIN IN THE LUMPECTOMY SPECIMEN, I DO HAVE SIGNIFICANT CONCERN THAT THIS ENTIRE SUPERIOR MARGIN MAY NOT HAVE BEEN CLEARED WITH THE ADDITIONAL PIECE OF TISSUE TAKEN AS DEEP." but I don't know what to expect regarding the finding of extensive LVI. Does that sometimes change the treatment plan or do they expect radiation & the anti-hormone drugs to take care of LVI?
Just trying to wrap my head around what I might be able to expect come next week. I was so excited to be done with chemo & surgery and now I'm a little bummed
0 -
hybrids, first, I'm sorry this is happening to you. If I were you I would get a call into your doctor right away. There is no reason for you to have to sit here and worry. I would suspect you will need additional surgery, but only your doctor can give you the meaning of the path report and what the options are. I'm thinking of you
0 -
Thank you Mactaz. My surgeons nurse called this morning and said my pathology is complex and unfortunately, my surgeon is out today but will be back in the office tomorrow. She moved my post surgery follow up appt to tomorrow (it was Thursday) and said we can go over the pathology then. Fingers crossed the news isn’t too bad.
0 -
hybrids, I will be thinking of you and sending you lots of 🤗. Stay strong
0 -
Hi Hybrids,
Sorry this is happening to you. It is great that you will be able to discuss with the surgeon tomorrow. Getting that information straight from the pathology report with nobody to help you interpret it or give context can give you too much of a scare. On the positive side: your nodes are clear which is excellent news.
I also had a ~3cm tumor, had five months of chemo (AC then THP) and after the chemo the clinical examination and also an MRI showed no signs of cancer. I was giving the two options, lumpectomy + radiation and mastectomy, with the surgeon recommending the first one (lumpectomy) and the oncologist the second one (mastectomy). In the end, I opted for mastectomy, but I had I decided lumpectomy, it is very likely that I would have ended up in your situation, because I had a lot more cancer than expected. I still had a 2cm solid tumor and, unfortunately, cancer in my lymph nodes and lymphovascular invasion.
When discussing with the surgeon (who recommended lumpectomy), prior to the surgery, he said that, if we found more cancer than expected, we would go there again and have more surgery. So I also think that you may need additional surgery to achieve clear margins, but your surgeon will be able to tell you tomorrow.
Notice that for triple positive breast cancer not getting a pathologic complete response, while very disappointing, is not unusual. Sounds terrifying when you get the news, but it does not necessarily make your prognosis (much) worse. Also I think it doesn't change much the plan for next steps of treatment, meaning that you wont get more chemo, you will just get the radiation (which you were already expecting), plus H+P to complete one year, plus hormonal treatment.
Hang in there, don't panic just yet -and keep us posted!
Good luck for tomorrow,
LaughingGull
0 -
Thank you both very much. 🙂 I’m just going to try and stay busy today.
0
