TRIPLE POSITIVE GROUP
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Gamzu I’m chiming in here. I had a lot f joint pain on arimidex. My onc and pcp recommended Cymbalta, off label. It’s an anti-anxiety drug that was showing a lot of pain relief with people. I swear that is a miracle pill. It helped my pain immensely. Found out my SIL takes a pretty hefty dose for her back.
I’m staying in it for the rest of my life. I feel like it helps with arthritis too.
speaking of the rest of my life…I went to my ob/gyn for my two year check up ( first time I got to go 2 years). In the last couple of months I’ve been having some nagging pain on the right side. She does the exam…hits the spot…I have an enlarged right ovary. Pelvic ultrasound next Wednesday. Of course, I’ve been reading and the one consistent thing is ovarian cancer. Cysts are more rare at my age and the other stuff doesn’t fit.I could use a Valium prescription about now. I can feel the same sort of panic disorder i developed last time creeping in.
I’m hoping that what we thought were gall bladder issues aren’t related to the ovarian issue.
Now a funny story. Last time I posted in January, I think, I was preparing for my gallbladder surgery. We go to the hospital. I meet with the anesthesiologist, the doc pops in, they’ve got me all prepped except for the iv.
Nurse walks in the room and says…ummm, you have covid. WHAT??!!! totally asymptomatic. So home I go. Spent five days holed up in my bedroom. I did develop very minor symptoms. Found a doc to give me the antibodies. Had that done.
So, official gallbladder surgery was late March. Pretty easy recovery. Getting used to diet changes.
Special k-you are absolutely right about what happens with high fat meals.
I’ll catch up with everything on here over the next few days. It’s where I come when I’m most paranoid.
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Fluff!
Good to see you again but sorry to hear about your enlarged ovary. My sister has had a lot of problems with her ovaries, but never cancer.
I also had my gallbladder removed, long before Covid. Yep, definitely can't eat any high fat meals. I have banished heavy cream from my pantry.
Hope the enlarged ovary turns out to be a nothing burger.
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Elainetherese-I am a massive warrior when suspicious things happen. Living past bc is not my strong suit.
In this case, when I look at all the possibilities, unfortunately for my age the most likely scenario is the bad one. Hoping it’s not but…
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That should be worrie
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Ugh, fluffqueen, I really hope it's just a cyst. How unfair. Not that anyone ever asked us.
I'm getting over Covid at the moment. Today was day 11. Mostly back to normal except for some sinus drainage and headaches. It did have the effect of making me completely forget about all my exemestane aches and pains!
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Gamzu-good luck on the Covid recovery. I barely had symptoms, however it took right at 2 weeks before I tested negative.
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flufff - I had a total hyst/ooph about 20 years ago due to continuous bleeding and TVUS that showed many large uterine fibroid tumors. I initially went to the gyn because I had enough of the symptoms on the list of ovarian cancer to be concerned. I had a long history of ovarian cysts, including one lemon-sized one that ruptured. That hurts worse than labor. Post-operative pathology revealed a surprise 3cm mass (pre-malignant) in the right ovary, which was either missed by US - consistent with my history of imaging - or it grew to that size in the time since the US. The ooph was elective, so I was very glad I did it despite the surgical menopause. Hoping this is something harmless for you and fixed by surgery.
DH is recovering from Covid, caught at work from exposure to someone who had a sick family but came to work unmasked all week. SMH! What are people thinking? I have been hiding on the opposite side of the house - he had a very symptomatic case and it was actually a scary experience. Super high fever for days. My WBC is very low so even though I am vaxxed and boosted, so was he, we were very careful and I escaped without getting it - It has now been over two weeks since he tested positive. Not a fun experience but it was an excellent reminder of why it has paid for me to be a hermit and mask everywhere I go.
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Hi Everyone - hoping to introduce myself here and maybe get some perspective.
My backstory: lump found at a routine breast check at my gyno appointment on 4/13. Biopsy results came back 5/2, 1.1cm, triple positive. ER 60%, PR 20%, Her2+++, Grade 2 IDC. BRCA 1 & 2 negative. Negative for the rest of the gene mutations they profiled.
Met with the breast surgeon 5/4 to discuss options. She ordered an MRI. I'm terribly claustrophobic, and travelled 2 hours north to get into a wide-bore machine on 5/17. Results were delayed coming back the following week because they said the radiologist wouldn't read them without prior images. The priors were then delivered to them the same day that I was told this.
MRI images came back to my surgeons office today and she said that they weren't diagnostic due to too much movement. She said if I'm considering breast conserving surgery she'd have to have the images redone. I am not considering that though; just want a mastectomy with no reconstruction. She says in that case she doesn't need the MRI redone, but encouraged me to talk with my oncologist about this as well. She says that this type of cancer is normally treated with neoadjuvent therapy but I'm in a grey area because the tumor is small and surgery can be done first.
My first oncologist appointment is for 6/8. I'd planned to ask about any other available/applicable genetic testing that may inform my decision to get a double mastectomy rather than just a single.
I guess what I'm trying to figure out here is if I actually should get the MRI redone? I figure it wouldn't really make much of a difference as far as the surgery is concerned, but other than knowing what's working, what would be the benefit to getting neoadjuvent treatment before surgery?
Any thoughts to share? I'm feeling pretty desperate for some clarity with this whole thing.
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Hi jh40 - If you decide to have another MRI, ask for a sedative to help you through it.
My situation was different, but similar. My BC was found on a routine breast MRI. My turmors were next to each other total 7.5cm. The tumors didn't show in the mammogram 6 months prior. My BRCA was negative, but there's a family history of BC. My breast surgeon scheduled another MRI, but canceled it after I decided on a mastectomy. The MRI would have been used to place clips. I did chemo first based on tumor size, then single mastectomy, then targete treatment. I did prophylactic mastectomy a year later.
Best of luck with your decision and treatment.
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cardplayer - thanks for the insight. Your situation was kinda similar. Crazy that neither of the tumors showed up on a mammogram only 6 months prior!
Do you know if there's some advantage to doing chemo first for triple positive other than size? It seems to me that if something is operable and you want a mastectomy, why not just remove it? Is it to understand what treatments will be successful?
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Hi!
I did chemo first. It cleared out all of the active cancer in my breast and compromised lymph node. I had what is called a pathological complete response (PCR) to chemo, which is seen as a good outcome. By doing chemo first, I was able to see that my chemo had worked for my particular kind of cancer. Not everyone has a PCR. If you have residual cancer after chemo, your oncologist may recommend further treatment such as Kadcyla.
Also, neoadjuvant chemo gave me greater surgical choices. Because the cancer was gone, I just went with a lumpectomy instead of mastectomy.
If you want a mastectomy, it might not be important to get the MRI re-done. However, an MRI could also pick up on any compromised lymph nodes, which you might want to know about before surgery. I had a PET scan and an MRI done before chemo and after chemo. They indicated that the cancer was gone, and that was confirmed by the post-surgery pathology report.
Good luck!
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jh40 - Unfortunately, I am not familiar with the decision making criteria for when oncologist and breast surgeons recommend chemo vs surgery first. In my case, based on tumor size, triple positive and IDC BC, chemo wasrecommended before surgery. Check with your surgeon and oncologist. They can describe the decision making process for your particular situation.
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elainetherese - thank you for that insight. I could see the chemo before surgery being great for clearing them out if there’s lymphs involved, and also for surgery options. I want to avoid recurrence and radiation if I can, which is why I’m opting for mastectomy. My surgeon says I’d have a 17-20% recurrence rate with lumpectomy/radiation. Less than 5% with mastectomy, and wouldn’t need radiation.
I’ve still been concerned about my lymphs despite a lot of positive opinions.
The head of radiology did my initial imaging at the local hospital. She said the lymphs looked uninvolved. The radiologist who did my biopsy said the same thing, and my surgeon did too when she reviewed the images. No way to know for sure without testing though, right?
My surgeon says she will take 3 nodes and send them off to be tested in the lab because apparently there’s a 33% false positive reading in the surgical environment. That was news to me when she told me, and I’ve never heard or read about that anywhere else. Does this seem right?
She says that with surgery first, and with no lymph involvement, I could avoid the heavier chemo and just get the 12 rounds of Taxol, which she says is gentler, followed by Herceptin and hormone treatment. I think she’s trying to spare me the extra toxicity with surgery first
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jh40,
RE: lymph nodes -- in a surgical setting, it might be the case that micromets could be missed so yes, the lab is more accurate.
RE: chemo choices -- I don't see why you can't just do the Taxol before surgery. There's no law which says you have to do TCHP or AC+THP as neoadjuvant therapies. If your lump is small enough, Taxol could be a neoadjuvant treatment. It it doesn't do the trick (as revealed by surgery), you can always do something like Kadcyla later.
Finally, there's no guarantee that your lump will actually be 1.1 cm. Imaging isn't perfect. If your cancer is significantly bigger than 1.1 cm (say over 2 cm) in your surgical pathology, your oncologist may recommend a more toxic chemo in the end.
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elainetherese - I see all of that logic. Makes a lot of sense. Also the bigger tumor reveal...my terror! But I have been aware of this happening sometimes.
I’ll be speaking with my oncologist on the 8th and I’m sure he’ll have a lot to tell me. I’m going to mention everything to him, (the things you said as well) and see what he makes of it all
To be fair to my surgeon, she did recommend that I speak with my oncologist before surgery as well.
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Yeah, I would bring all of these questions to your oncologist. The good and bad thing about breast cancer is that there are a LOT of us, and thus a lot of data on any particular treatment plan that your MO should be able to explain to you to help you make the decision. I did surgery first (6mm tumor) but it was accidental as we didn't know the lump was cancer beforehand; it was supposed to be an "excision biopsy" for ADH, only it turned out there had been a sampling error with the original needle biopsy. Fortunately the surgeon got it all during the excision as she didn't like the look of it visually and took wide margins on the excision. You may also be in a gray area where it doesn't make much difference which option you take. But your MO should have answers for you.
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gamzu710 - wow, that’s a crazy experience. That must have been really tough to find out it was cancer in that way.
Thanks for your insight. It’s really helpful to hear other stories.
I have so many questions and feel like I’ve been waiting so longask them. I’m also feeling pretty disappointed that my MRI turned out to be such a fail.
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jh40,
Hopefully, your oncologist will be helpful. I do think it's important to focus less on recurrence rates and more on survival rates. Breast cancer patients who get mastectomies do not have better survival rates than those who had lumpectomies. In other words, cutting out more breast tissue doesn't have any impact long-term. Of course, skipping radiation is a pretty good reason to go for the mastectomy, so I can definitely see why that might be a priority. Also, some women prefer to avoid the annual mammogram and all that entails.
For me, at least, the important thing to worry about is not recurrence but the spread of breast cancer to other parts of the body. No one ever dies from breast cancer that has invaded their breast tissue. Instead, patients die when the cancer invades their brain, liver, lungs, etc.. That's why chemo effectiveness is so important.
Cancer cells may break off from the existing lump and travel through the lymph system and/or bloodstream to distant organs to set up shop. The purpose of chemo is to destroy these cells before they can do that. Triple positive breast cancer is especially likely to go to the brain -- I would rather not have to do whole brain radiation or cyber knife if I can help it.
Good luck with all of your appointments! I still remember all the appointments at the beginning of the process; I thought I lived at the hospital.
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elainetherese - yea I think any knife to the brain sounds pretty horrific!
The entire treatment menu also sounds pretty horrific. I’ve known that menu is meant to prevent distant metastasis, but none of it sounds very appealing!
Hoping it will be a kinder path than I’ve imagined it to be.
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jh40 - generally the chemo before surgery option is driven by tumor size and/or nodal involvement. About a decade ago almost everyone (myself included) had surgery first for Her2+ breast cancer, followed by chemo and Herceptin, and then radiation if needed. When Perjeta was introduced for early stage patients in late 2013 as an addition to Herceptin, neoadjuvent chemo became more the norm for those with tumors larger than 2cm, or nodal involvement, or some other constellation of high risk. In an effort to spare those with smaller tumors and no nodal involvement the potentially more damaging side effects of multi agent chemo regimens, Taxol and Herceptin given adjuvently is often done. Here is some study info about the success of this approach, and another link that discusses the longer term follow up of this study.
https://www.nejm.org/doi/full/10.1056/nejmoa1406281
https://pubmed.ncbi.nlm.nih.gov/30939096/
In my time on this site I have not seen quite that high a percentage of patients with surprise positive nodes, but that did actually happen to me. I have a history of faulty imaging, and it was one of the reasons I opted for a bi-lateral mastectomy. There are pros/cons to adjuvent vs neoadjuvent chemo - with adjuvent chemo you get the information from surgical pathology and have a clear staging picture. With neoadjuvent chemo you get to see how well chemotherapy reduces or eliminates your tumor, but the extent of staging can be muddy waters. If you have the option of either choice it can become which provides you more peace of mind.
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jh40 -like special k, I didn't have the chemo option first, but it does make sense as far as showing if your body will respond. It would probably have made me nervous that something else was going on while I was getting the chemo, lol, but that's how my mind works. I chose mastectomy for many of the same reasons as you did. Had I been younger, I might have done something differently. One thing I really miss is the nerve sensation. That was kind of the hot spot for me and with it gone it has ben challenging in the romantic side of things.
Because I chose mastectomy, I did not require radiation. Had I not, based on my size, I was on the edge of needing it. Taxol was a pretty easy chemo to tolerate as things go. They took two lymph nodes to test on mine, which were clear.
On my ovarian side of things, there was no mass, so that is great news. I do have some calcifications in my right ovary, so they ordered a ca-125 test. based on those results, they may decide on hysterectomy. Currently both the oncologist and the ob/gyn say it isnt needed. But I have to hav another pelvic ultrasound in 2 months. I've decided to be patient until then, which isnt in my nature lol.
JH (I think)-keep a list of all your questions to take with you. I taped a couple of my conversations early on. It is amazing what you miss or forget.
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Happy Friday all! My oncologist is pushing me to get a Reclast infusion. I had my first bone scan a year ago and I was diagnosed with osteopenia in my hips and parts of my spine. I am on Arimidex and honestly I have a good deal of joint pain and some arthritis now. I am 55 years old. I'm curious if any of you have taken Reclast and what your experience has been. I am so tired of chasing side effects with other drugs that create new side effects. It's never ending!
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Isn't Reclast a biophosphonate? I was on Fosamax, but it was taken orally rather than via an injection. I had no side-effects from Fosamax
After six months on Fosamax, my oncologist prescribed Prolia, which is a shot every six months. I have no side-effects from Prolia. My bone density has improved from full-blown osteoporosis to osteopenia.
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Last August I was in LA visiting family when the pathology report with triple-positive IDC popped into my patient portal. The trip was ruined and I spent the rest of the time in a fog of alternating panic and numbness. Tomorrow we are leaving for LA again, to visit the newest addition to the family, my 2-month-old niece. Seeing the same people and spending a couple days at the same hotel where I opened up my patient portal and the ceiling fell in. 10 months later and I've got a buzz cut and a port and had to schedule the trip around my Herceptin and Zoladex injections and have all kinds of lovely joint pain from the exemestane. But I'm in a sweet spot between scans (MRI in May, f/u diagnostic mammo in August) where the ceiling can't fall in again for at least another month and I am determined to replace last year's bad memories with good ones in the same places.
I'm also determined to argue for a year of Nerlynx but that's a conversation for September.
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gamzu710 - glad you’re replacing bad memories with good. I’m at the beach with my family Two years ago, they went without me. I was preparing to start chemo the following week. It’s always good to have something to look forward to. Enjoy your trip!
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Hi again All
I had surgery on 6/13, single mastectomy. Recovery is going really well. I have a lot more fatigue then I ever expected but I'm still in good shape.
My surgeon called me yesterday and told me that the final path says the tumor was only 1.9mm and both lymph nodes were clear. This is obviously excellent news, but I'm shocked at how it could go from 11mm down to 1.9mm. My surgeon suspects that the radiologist got it wrong to begin with and that the tissue surrounding the tumor was not cancerous but appeared to be, and thinks it wasn't 11mm to begin with.
I remember also asking prior to surgery if there was a chance the tumor could be smaller because of what was removed during biopsy, but both my surgeon and oncologist said biopsy tissue isn't very consequential to the overall size, and if anything I should expect for it to be slightly bigger. The biopsy sample sizes were noted in the report and the math isn't there for 9.1mm of tissue.
This is a significant difference in size, and I'm just wondering at this point if anyone else out there has had this experience before? Should I ask for the images to be reviewed again by different radiologists?
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I've gone from great news to unexpected news. Met with my surgeon yesterday to be told there was a typo in the final pathology and the tumor was not 1.9mm but 19mm. There was DCIS in there as well but it was negative for EIC. So it went from 11mm to 19mm. 1 single cell isolated cell in 1 lymph node, nothing in the 2nd, which my surgeon says means that they're still classed as negative.
Is there anyone else out there with this sort of experience with imaging? Should I be asking for multiple opinions? I know imaging is not perfect but it's surprising that it could be this far off the mark.
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I did not have an experience like this with imaging but I did with pathology. I was initially told my tumor was HER2- but my oncologist insisted I send my sample to a second lab which came back with a portion of the tumor being HER2+. My tissue sample was passed around for so long, like weeks and weeks if not months, that I'm not even sure that the tissue pathology didn't change in the lab. It's frustrating to have to shift gears emotionally during a really stressful time. I'm sorry you're going through this. I don't know what advice to give about second opinions on the imaging but I feel you on the frustration. Wanting concrete answers around your health is a pretty basic need.
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jh40,
In my experience, different imaging can produce different results. The ultrasound said that my tumor was 3.9 cm; an MRI said it was 5 cm with a lovely satellite tumor. Because my lump was close to the skin and could be measured with a ruler (so high tech!), my MO assumed it was closer to the 5 cm size. I will never know for sure what the actual size was because I then did chemo before surgery.
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joules44 & elainetherese thanks for sharing. It's unreal to me that imaging and tests performed so often can be so inaccurate. We can send astronauts into space but somehow we can't manage to get this right? It really is frustrating.
It's comforting to know that I'm not alone in this sort of experience, with everything coming down to millimeters. I'm supposed to follow up with my original oncologist tomorrow, and my surgeon recommended a 2nd opinion, so I'll see what they have to say.
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