TRIPLE POSITIVE GROUP
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Hey MissouriCatLady, thank you for the reminder!! I got delayed with my breast MRI and came down really hard on myself. Then I gave myself the 2am "I am in a really dark place" pep talk and turned the lights on the reality that I really cant control any of this.
I am open to whatever comes. I just need to feel I am moving forward even if it is slow.
😊
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Well everyone, I might be out of this group! My mom’s pathology report came back today. I’m still at work so I only have peripheral details, I’ll read the whole thing once I’m home, but the tumor was smaller than predicted! Good news there! Also, no lymph node involvement or lymphovascular invasion!
The doctor is retesting for HER2+
Originally, they did send out for FISH after ICH came back equivocal, and it was positive. There was DCIS involved. Could this be a reason? It seems very bad on the team’s part if this is an error and it’s not HER2. I’m confused how this could have happened. Anyone more knowledgeable than me know how?
If it is not HER2+ the BS says chemo may not be necessary and they’ll test with oncotype.
For now, just relieved it’s even smaller than the 12 mm prediction and no nodal or vessel involvement!
Thank you!
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also, thank you everyone for your advice about the nurse! She clearly turned out to be wrong, and I agree she shouldn’t have said anything! If you don’t know, you shouldn’t say! It can either give false relief or unnecessary anxiety! It’s not fair to the patient!
Thank you for your replies
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1207262 - yes, the DCIS portion could have been what tested positive for Her2 as DCIS is frequently Her2+, but it is important to remember that tumors are not homogenous - a portion of the invasive part could have overexpressed Her2, while another portion of the same tumor may not. This is one reason that in cases that do not obviously require neoadjuvent chemo, the post-surgical pathology is what drives decision making.
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Lilych- Ha! You were one of the people calming me down back in July! Thanks again and I hope this is the last reassurance I will need for a long time. I don't know how you and your wife made it through a lung biopsy without a breakdown. It's like a form of terrorism to me...waiting...for the OK or something really bad. I guess we rise to the occasion. If we like it or not. A friend of mine who was dx'd the same time as me handles nothing well, and they expedite test results for her. Given that she presents at the ER with panic attacks I can see why.
Missouri - Thanks for the offer of help. I will take you up on that. Sometimes all we need is to talk to someone else on our journey. BC can be a very lonely experience!
Hapa- Thanks for the info on Nerlynx and Kadcyla. I do not believe I'm a candidate for either at this point.
I had my chest CT done on Monday. Still waiting on the results. Ugh. I want off this ride! As Bill Paxton's character in “Alien" said, “Game Over! Game Over!" I have been holding up surprisingly well. I read Lilych's comments on the unlikelihood of my nodules being mets and that calmed me so much. I also spoke with the MO's NP and she said the same thing. “Highly unlikely," and “nothing to worry about" were the phrases she used. So I may not find out until tomorrow or Friday
In other news I see three new docs Thursday at an NCI facility where I'm transferring my care. This makes a total of seven new docs for me since diagnosis. Half of which are due to this mutated ATM gene I carry. Next Thursday is exchange surgery I will be so happy to get these expanders out, and move forward with the reconstruction of my breasts. Doc said I may need another surgery for fat grafting after this. Still, moving in the right direction.
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Wheatscapes, best of luck with your doctor visits today.
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Has anyone flunked their echo, my LVEF was 40% this time, and MO is putting HP on hold until I get another echo in December. If that one is low, I have to see cardiology. I have 2 HP's left. If anyone else has been down this road, could you please share your experience? Thank you. I know now why I go to bed early.
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So, I think we have a final plan. It seems this is not the norm though so I am praying for a good outcome.
I am scheduled for surgery, a double mastectomy on 12/18. It seems a ways out but surgeon and oncologist both feel it is within their "safe" zone based on the imaging showing no lymph node involvement.
The big issue is that my breasts are so dense they are having a hard time seeing what is going on. We have a confirmed mass with LCIS, high grade DCIS and the invasive component in the right breast. In the left we have a 2.6 firbroadema that did not show up till the breast MRI.
Breast MRI is showing "innumerable foci of enhancement and cysts." All of this combined makes us all want to see what is going on with some clear pathology.
So, they are sending to the insurance company for a pre-auth for the bilateral mastectomy because the left breast could still be seen as elective.
They gave me the option to start tchp now but if the mass on the right is the only thing going on I am a good candidate for the weekly taxol/herceptin route.
I feel at peace with the decision and more comfortable than I did when then only presented option was chemo/surgery. But the late surgery date makes me nervous. Plus I am not sure what I will do if the insurance company denies the bilateral. I am not a fan of a single mastectomy after living with my mom, a 13 year BC survivor. She did just one and has struggled with back issues, clothing, etc.
I have total decision fatigue!!
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missouri - some previously active members of this thread had a significant enough drop in LVEF to have Herceptin delayed at a minimum. In some cases you will see a spontaneous rebound of LVEF, but in order to resume in a timely manner some cardiologists will put a Her2+ breast cancer patient on cardio protective meds for the duration. The good news is that Herceptin, in the absence of Adriamycin, does not usually cause a permanent drop in LVEF. Since you are very close to the end of H, you may be able to stop at this point, as a study of 6 months of H did not demonstrate a marked difference in efficacy. Here is a link to BCO's info on that study, the Persephone Trial :
https://www.breastcancer.org/research-news/herceptin-for-6-months-seems-same-as-1-yr
rlmessy - I had very dense breasts, mammo failed to see 2.6cm very palpable tumor, a long history of cysts, and aspirations over 20 years. I was a lumpectomy candidate according to my very experienced surgeon, but I did not feel it was the right choice for me in light of not being able to rely on imaging moving forward, and knowing my propensity to "make" things. I had a history of ovarian cysts, a pre-malignant ovarian tumor, numerous uterine fibroids, and a nerve sheath tumor in my calf. My thought was also that breast cancer appeared in my right breast, what would stop it from appearing in the left? MRI did not show any additional issues prior to surgery, but afterward there was extensive ALH and ADH found in the "prophy" breast, and I was node positive on the cancer side, which MRI missed. My bad imaging (ultrasound) date was 9/9, biopsy date 9/22, diagnosis date was 9/27 and my surgery date was 11/1 - so almost two months from start to surgery - you should be ok with your dates. You could inquire about starting anti-hormonals rather than chemo, I have seen a number of people do that. If the info on density and the possible issues with your currently non-cancer breast is included with your insurance pre-auth I am hopeful that it will be approved.
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MissouriCatLady - I did not flunk an echo but I think Jstarling did and they would stop her infusions until her LVEF went back up, and then restart. She was able to complete the year of Herceptin IIRC. But with you having a PCR and only two infusions left, just stopping altogether seems like a viable option.
rlmessy - I have never heard of anyone being denied double mastectomy by their insurance because the other breast didn't have cancer. I didn't even know they could do that. My docs recommended BMX for me over UMX and that was also my preference. There was no discussion of "if your insurance approves".
Just a quick update on me: still doing the Nerlynx. I started at the end of May and had relatively few problems with the big D compared to most. I accidentally double dosed one day about a month or two ago and that did not go well, but since then I have had absolutely no GI problems at all. I am fatigued but its hard to say if it's the Nerlynx or AI or the fact that I have a full time job and am taking 2 science/engineering classes on top of that. I scheduled a round of fat grafting for the Friday after Xmas with a PS who is fresh out of fellowship, which is something I would have been WAY too cautious to do a year ago. My husband is giving me grief about having yet another surgery but he can suck it.
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SpecialK, thank you so kindly, I appreciate it very much. Thank you for the link.
Hapa, MO and I talked about Nerlynx. Guess we will talk about it again soon. We are on vacation today, my husband and I, and I had to smile about your husband and your comment. I have had nothing but such wonderful support from this man. I can tell he is troubled by "heart failure" news, but I have tried to reassure him, it is common with these drugs. He is buying a pizza tonight so I don't have to cook. Give your husband a hug. You are a true warrior with all the things you are doing - awesome for you!
Best wishes, thank you for letting me have a peaceful mind this evening. Hugs, Lisa
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SpecialK - you sound a lot like me. Unfortunately, I can go back 20 years to my first biopsy in my doctors office. He thought he was going in to get a small pea size cyst and when he got in there is was the size of a 50-cent piece wrapped in spider-web. He was like - we have to go to the hospital - and I was like - nope, you are there get it out now. LOL. The things we go through. Since then I have had considerable diagnostic call backs and rarely do screening mammograms only. I am sure if the doctors office can't make the case I can, especially with LCIS and DCIS currently showing in the right mass. But I really, really do not want another 20+ years of monitoring at the level we will need to monitor at to keep all this under control. I am not sure I can mentally handle that every year!
My mom is a 13 year breast cancer survivor with the same presentation as me - I am confident I have a good prognosis if I can just get started with everything.
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Well, my doctors appointments didn't go well today.
Backstory: I was diagnosed, had a bilateral mastectomy and 12 rounds of Taxol and Herceptin at a community cancer center. I have been in the process of transferring my care to an NCI in my city due to my mutated ATM gene.
Transferring my care meant all new docs and then a few more. Went for initial visit with my new breast surgeon today. She immediately told me that my old BS didn't remove enough breast tissue and that I needed a second mastectomy. I was floored. She sent me to a radiologist right then that used to be the president of the American Cancer Society, as well as on staff at MD Anderson for an ultrasound to assess how much tissue was left, and to screen it for any recurrences. Radiologistsaid she saw no cancer in the breast tissue left behind, and that with the ATM mutation I needed to have my case reviewed
Then, I went to see my new MO for a second time. My CT Scans came back with “very slight differences" from my baseline scan. Keep in mind, this was a different machine and a different radiologist reading the results. So my MO is sendingme for a PET scan tomorrow. I read the report which stated there were several nodules in both sides of my lung, as well as something strange on the top of my liver and something on my sternum. Basically, the new radiologist was noting every tiny thing the CT Scan picked-up.
So now I'm in real freak-out mode. I need additional testing to rule out Mets, and apparently a second mastectomy.
Stick a fork in me, I'm done.
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Wheatscapes, it sounds like your new team is retracing the steps of your former care team and is taking a very careful approach to make sure nothing was missed originally. This is not actually a bad thing but that’s easy for me to say and really difficult for you to be dealing with. Towards the end of chemo and before surgery, I had similar incidental findings and went down a rabbit hole with additional surgery and biopsies. The findings were benign. The fork in the road was unexpected and unwanted but I survived. You can too. Sending positive vibes and support. I’m hoping for a goodoutcome for you and I’m sure everyone else on the board is too. Hang in there and please keep us posted. All the best.
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Wheatscapes,
Scans show a lot of things that are benign. I had my left hip (femoral neck) light up three times on PET scans. My MO sent me to get an MRI, thinking she might do an MRI-guided biopsy. Guess what? The MRI didn't "see it." So, she wrote it off as a false positive.
Breathe in, breathe out. This too shall pass.
((Hugs))
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I have an odd question but one I have been pondering since my surgical consult yesterday.
I am reading many posts and many women are doing neo-adjunct chemo and then having a mastectomy.
The neo-adjunct chemo makes total sense to me if the next step is going to be a lumpectomy because you are reducing the tumor size and thus the amount of tissue needed to obtain clear margins.
But if you are getting a mastectomy what is the point of smaller tumor size when you are going to be removing it all anyway? Or is it more to curb the systemic possibility with the HER2+?
I am in a situation where I can do either and am just trying to wrap my head around all of the options. Because, of course, I am overthinking my surgical decision. 🤪
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rlmessy - neoadjuvent chemo for Her2+ patients did not come about as a way to increase margins to achieve lumpectomy, rather it was because when Perjeta was introduced for early stage patients in late 2013 the FDA instruction was that is was only to be used neoadjuvently with a taxane based chemo plus Herceptin. At that time as well, there was no approval for adjuvant Perjeta for early stage. For those with tumors generally 2cm or larger, this has become new standard of treatment and neoadjuvent treatment is far more common than when I was initially treated. Triple negative patients have neoadjuvent chemo to gauge whether the selected treatment is working since there is no adjuvant anti-hormonal treatment available, and others who are neither Her2+ or TN have neoadjuvent chemo to shrink tumors for surgical options.
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SpecialK...thanks that makes sense. And more sense in my situation. I may or may not be a candidate for perjeta due to my tumor size. I am at 1.9cm. So many of my stats are borderline and can go either way with some treatments.
Appreciate the info!!🙂
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rlmessy - there is now the option to add Perjeta after surgery, which makes the decision about order of treatment somewhat easier. I have seen some insurance coverage for tumors less than 2cm as well, and I personally would add it for anything close, if it is well tolerated.
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Wheatscapes, best of luck! you will be fine!!!
rimessy, I thought one benefit of having neo-adjunct chemo is you would know if the tumor has good response to the chemo or not.
When my wife was first diagnosed by US/Biopsy, it said 7 mm in size and only TCH was planned. Later on the BS ordered a breast MRI and it came up with a size of 2 cm, then P was included. You could still have P for a size of 1.9 cm, I believe.
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Rlmessy, I’m one of those you had neo-adjunct therapy and a mastectomy. I originally started out with this to reduce my 2 tumors so lumpectomy would be viable. After I started treatment they also found DCIS and my BS strongly recommended mastectomy after neo-adjunct. She said with so three instances of cancer there could be a possibility that in a lumpectomy some cancer cells could still be present but not captured in lumpectomy, I just didn’t want to take a chance. (I realize DCIS is considered pre-cancer). I had great path results, a CPR, no cancer cells found anywhere. There were some scarred nodes, which could indicate cancer cells were present but we will never know for sure. All my scans indicated no nodes were involved. After neo-adjunct I had an additional 11 rounds of H&P. Perjeta was approved by insurance due to size of tumors and also possible node presence.
I definitely had the same question as you, and must admit I’m still not sure I understand completely. But in my case, with all the diseased tissue it was the right decision for me.
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Lilych...I read that too and understood that benefit but it seemed to be frequently related to the lumpectomy route.
I guess I am showing my age and how old school I am. I just always thought...cancer?...surgery!!
Thanks everyone!!
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Uggg...I am so flustered and angry today!! I started this journey with my dx on 10.10. Started with one group in my city and scheduled a second opinion with the second group. I could not get into the second group till last week. Saw the oncologist on Tuesday and the surgeon on Thursday. All my diagnostics are done. The second oncologist and surgeon suggest surgery first with chemo and herceptin to follow...final chemo to be determined by final pathology but hoping for a weekly taxol/herceptin route. Got surgery scheduled for first available 12.18. That is 71 days from date of dx but I was at peace with it.
Then today I had to call the surgeons office because in my notes about scheduling the surgery I realized the scheduler did not say anything about port placement at the same time. The scheduler calls me back and this is what happened...
She never confirmed who she was talking to just said "you called with so many questions so I am calling you back."
She said I have no port order because "are you getting chemo? It says her you are getting Tamoxifen." Hello, lady I am 1a, triple positive, of course I am getting chemo and if not at the very least herceptin every 3 weeks.
Then I asked about my ins pre cert and she was like "I am not even done with Novembers, you will get a letter in the mail." So, I said that's nice but I will check back with you in a week or two because this cannot go out any further than 12.18. And if we have to appeal I want it done asap.
I then asked about pre op testing and nope they dont do anything. I am in shock...no one so much as touched me much less listened to my heart or lungs. I did have an echo done in case we did chemo first and I had routine blood work done so I guess they are using those. I dont even know.
So now my once peaceful calm about this group has quickly turned into fear that I made a wrong choice. I did call the oncologist nurse navigator and she had it fixed within 30 minutes. So, I guess I am hopeful that the oncologist has it all together and I wont really spend that much time with the surgeon anyway. But, damn this totally brought me to angry frustration!!
Rant over. 😥
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rlmessy - it's hard when there are aspects that make you nervous, such as treatment order and insurance hassles, while you are trying to adjust to being diagnosed with breast cancer. Been there, done that. I had quite a bit of time between initial imaging and surgery, in part because I am adopted and my surgeon wisely wanted definitive confirmation of my BRCA status before surgery. The week before surgery I was advised that my plastic surgeon was considered out of network because he was a provider for one plan of my insurance company, but not my plan. This was the plastic surgeon my oncological breast surgeon chose based on the type of surgery I was having - skin and nipple sparing BMX with immediate expanders. Far fewer plastic surgeons did this procedure nine years ago - so it was important to get resolution while not pushing the surgery out any further. I ended up sitting outside the referral management office until they confirmed an active referral to that surgeon based on the desired surgery type - probably three hours. I was totally stressed, and though it worked out, it wasn't something I needed right then. If your breast surgeon is doing the port install it shouldn't be hard to add the order. If it's a vascular surgeon or interventional radiologist that may take a bit longer to arrange. Be the squeaky wheel. Don't be too worried about the surgeon's staff not being aware of your hormonal receptor/Her2status - it's honestly not in their purview other than the port install during BMX, which is not particularly common. As far as pre-op testing it is often done, if at all, by the hospital's pre-admission folks, and closer to the actual surger. They may do an in-office EKG, and possibly a CBC, but many people don't have bloodwork done for this surgery unless they have had chemo first and their counts are suspect. Anesthesia will check your BP in pre-op.
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rlmessy - Well that’s a bummer. I transferred all of my care from a community cancer center to an NCI facility to make sure I was getting top-notch care. Too many mess-ups with my old care team. So glad I did: my first breast surgeon left behind copious amounts of breast tissue. Having surgery again Friday. At least they will give me my permanent implants at that time. Have you called your oncologist and asked why they didn’t plan for a port
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They typically don't do any further scans if there was no node involvement. That is normal. The rest of it is not. I wouldn't worry too much about the pre-auth at this point. I have never heard of anyone getting denied. This stuff is all standard of care and has been for years.
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Hey everyone -
I’m still here. Still waiting on the results of the PET scan. They said they’d have the results in one working day. It’s been two and nothing. My mind is running away with me. I had a bad viral infection three weeks ago. Had a bit of a residuals cough. Went for my 2nd Herceptin-only infusion yesterday. No cough since then. Now I’m so paranoid I can’t answer my phone. Afraid it will be my oncologist saying she wants a lung biopsy. My husband had to call them and tell them to call him with results.
Everyone has said how well I’ve handled a cancer diagnosis, bilateral mastectomy and chemo. How brave I’ve been. I think this all has taken a toll on me and I’m now worn-down to nothing. This is just....too much.
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Can someone help me understand conflicting results, I do not see MO until Dec 3.
10/15/19 Antigen tests were done, CA 15 shows slightly high of 34, normal below 30; CA 27.29 shows extremely high of 56, normal below 38.
BUT I had lumpectomy #3 on 11/6/19 to remove DCIS found at lumpectomy #2 and BS called and said "no residual cancer found".
I am so confused, makes me think cancer has spread, but that conflicts with small micromets found in sentinal node back on 4/3/19...
Dazzed and Confused
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rlmessy--just wanted to point out that not everyone gets a port. I did the Taxol/Herceptin regimen without one and was fine. My MO wanted me to try it without (which was my preference anyway). Some chemo drugs are tougher on veins and make a port more important, but lots of +++ do T/H treatment without one.
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I am sorry you had so much trouble. Nurse navigators are awesome people. Have her email address handy, in case you ever need her again. Hugs xx
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