Pathology is back and it’s aggressive
Now that I know I have IDC (for the 2nd time) I have switched over to this thread and plan to stay here. I’m hoping some of you ladies have a similar diagnosis and can help calm me a little. I just found out that this cancer is more aggressive than the last cancer I had 12 years ago. Findings so far:
Er(+) 70%.
Pr (-)
Her 2 +
LVI - yes
Grade 2, 4cm but the size could change after mri. So I’m having an mri tomorrow. I’m terrified they will find cancer in nodes during mri. Everything about this cancer is so different and I’m terrified that I’m not going to have a good prognosis. I would really love to hear from some long term survivors that are Er + and her 2 +. Does LVI always mean they find cancer in the nodes? I just need some hope to hang on to. I’m scared I’m going right to mets
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You are HER2+ so you will likely have chemo first. HER2+ is really not as scary anymore because there are so many ways to treat it. With the size & grade, you're really much better off than many of the people on these boards. I'd guess, and it is ONLY A GUESS, you'll have 6 rounds of chemo - like TCHP - surgery, likely rads (but maybe not) and Herceptin for the balance of a year - maybe with Perjeta added. Although I don't know your treatment in 2008. So maybe not rads if you've already had your lifetime limit.
That you're ER+ only gives you that many more treatment options.
Can't speak to the LVI - EXCEPT - you should know by now that there is NEVER an ALWAYS. Everyone is different. No they don't ALWAYS find cancer in the nodes.
Again - don't put the cart before the horse. Or as Alice said on another thread - (edited to correct the quote) "What you are doing right now is planning for recovery from a serious car accident when you haven't even gotten your learner's permit." Get your MRI - and ask your doc about anxiety meds while you wait for the results - which could well be more than another week. Fingers crossed.
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Minus 2 thank you! I had radiation 12 years ago so I’m guessing that is not an option this time. Why would they do chemo ahead of surgery based on Her2 status? I was unaware of that. When my dr called with pathology she did tell me herceptin is an amazing drug that is well tolerated by most people and she wished that it could be used in many other cases so I’m trying to cling to that. I do have LVI so I’m guessing the grade may change but I really hope the size doesn’t. 4 cm seems huge to me. My last cancer was .9 cm so this is much bigger. From what I’ve read on other posts it appears the MRI generally measures things bigger than the US. If they do 6 rounds of chemo how does that usually work? Does that mean it could be 6 months before I have surgery? I think the dr told me it would probably be a short course of chemo. I have no idea what that means.
Debbi
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Debbi,
They *always* do chemo in advance of surgery with HER2+ cancers because of their aggressiveness. It has the added benefit of shrinking the tumor and allow for lumpectomies in some cases. As Minus says, TCHP is likely--six rounds of Taxotere and Carboplatin, every three weeks (with Herceptin and Perjeta, targeted therapies) and then H&P for the rest of the year. H&P alone is easy compared to the chemo part, but even so, you can do this! Minus is also right that being HER2+ and ER+ gives you many more treatment options (including oral medications that inhibit estrogen and drugs like Nerlynx which target the HER2+ cells, which you would only take at the tail end of treatment). Being PR- does make your tumor even more aggressive, however. The only consolation is that aggressive tumors generally respond well to chemo. The fact that the tumor is 4 cm is not uncommon for a HER2+ cancer, sadly, but yes, MRI's are known to either show more or exaggerate, depending on how you look at it.
I'm very sorry you're going through this a second time. One thing Beesie mentions often, and rightly, is that once you're diagnosed a first time, you are immediately at greater risk for a second primary, which this clearly is. Have you had genetic testing? I would think insurance would pay without any questions given this is your second go round and if it were me, I'd pursue it. Wishing you the very best--you can do this.
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Beesy so when is surgery usually? Not til after chemo is done or not til chemo and herceptin are finished? Also if things go well, is there just one year of treatment and then done?
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kd - if you start reading about HER2+, the protocol is almost always chemo before surgery. The HER2 is aggressive and they want to knock out as many cells running around your body as they can as soon as they can. Also the subsequent surgery is easier if the size of the tumor shrinks with chemo - or even totally disappears (pCR + complete response).
Yes, I had 6 rounds of chemo 3 weeks apart. Taxotere, Carboplatin, Herceptin & Perjeta. I had more scans before surgery and while the tumor shrank it was not a complete response. So then surgery. Because I didn't have pCR, I had 4 rounds of Adriamycin, Cytoxan chemo after surgery. That is unusual, but this whole thing was a recurrence to we treated aggressively. Then back to Herceptin for a year. I declined continuing Perjeta due to diarrhea. And I did have rads after healing from the surgery while continuing Herceptin.
Some people have AC and then Taxol. That is shorter. But you can't give Herceptin with Adriamycin since both are hard on the heart.
So - my recurrence was February 2013. I'm almost at 9 years now and no evidence of disease. And I did all this at age 70. And did it all by myself except for a ride to & from surgery & two days w/my grown son here. You'll do fine.
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Ask about getting a port before chemo. Much easier on the veins, then can be used for herception. Depends on which chemo cocktail they use, how many infusion over what time span. I had 4a/c, 1 taxotere, was supposed to be 4. Those were every 3 weeks. Then about a month recovery, on to surgery. Then rads Then 4+ years on anti hormonal Had bmx
I reoccurred 7 years later on the other side. Surgery to get the nodes then rads. Then Ibrance and letrozole.
New meds and tx are coming all the time. Don’t forget to breathe!!
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Thank you minus two! You give me lots of hope. You mentioned you had more scans. What did you mean by that? Did you have more than an MRI.
Thank you Spookiesmom. I meet with my breast surgeon tomorrow after my MRI. I’m sure she will tell me what the next steps are but it sounds like I will probably be recommended to an MO next. I hope things move quickly. Not sure I’m comfortable with an aggressive tumor just hanging out for a minute longer than necessary
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Have any of you ever wondered or felt like you did something to cause your cancer? I’m losing weight because I’m afraid to eat anything. The thought crosses my mind that maybe I’m eating something that is feeding this cancer
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kdholt, with chemo, you are heading into territory where I can't offer any advice. But what I can tell you is that although HER2+ cancers are aggressive, because of Herceptin, the prognosis for HER2+ cancers is actually more favorable than the prognosis for HER2- cancers. A couple of years ago, a new method of staging breast cancer was introduced. In addition to the traditional TNM staging, we now have Pathological Prognostic Staging. This staging is still based on the tumor size and nodal status, but than adds in grade, HER2 status, and ER and PR. What's really interesting is that while most cases, HER2+ and HER2- staging is the same, in some cases HER2+ cancers have lower staging than HER2- cancers, all other things being equal. And in no situation is HER2+ considered to have a worse prognosis / higher staging.
For example, if your diagnosis remains as it is now, 4cm, grade 2, HER2+, ER+, PR-, that is Pathological Prognosis Stage IB. The same diagnosis, but HER2-, is Stage IIA. So if you follow the recommended treatment protocol - chemo, Herceptin, hormone therapy - it's actually more favorable to be HER2+.
As for LVI, no, it absolutely does not mean that they will find cancer in the nodes. Lots of women have LVI and are node negative. Hopefully that will be the case for you.
Lastly, it's natural to be worried about the tumor hanging out in your body, but the thing to remember is that the risk from breast cancer is not the cancer in the breast, but the possibility that some cancer cells might have moved into the body. Surgery doesn't address that, but chemo does. The role of chemo is to track down and kill off any rogue cancer cells that might be in body before those cells can take hold. And as a secondary benefit, chemo attacks the cancer in the breast at the same time.
I hope your MRI and discussion with your BS go well tomorrow.
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Beesie thank you so much for giving me hope. Everyone’s responses are making me feel stronger and more confident I can beat this! Thank you everyone!!!
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Well, of course your caused your cancer. Duh! You were born female. Well actually I guess that means it's the fault of your parents!
Seriously, if you look at any chart that lists breast cancer risk factors, all the high risk factors are things that are outside of our control. Number one is being female. Number two is getting older. Then comes family history and genetics. And a personal history of breast cancer. And breast density. And so on. There are factors on the list that are controllable, but those are all low risk factors, at the bottom of the list. Low risk factors might increase your risk by 10% or even 20%, but that's compared to these uncontrollable factors that might increase risk by 200% or even 500%. And the low risk factors don't each individually cause breast cancer, but possibly increase risk when combined with other more significant factors that are outside of your control.
It's easy to feel guilty about what you did or didn't do, or what you ate or drank. But did you cause your breast cancer? NO.
As for what to eat, for now, eat what makes you happy. You deserve that. Breast cancer is crappy enough and takes enough from us. Right now, find pleasure and enjoyment where you can. If that means a glass of wine or digging into a tub of Häagen-Dazs... well, has there ever been a better time to treat yourself?
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kdholt, i was triple positive and I'm 11+ years out from diagnosis. When I think back to the time when I was going through treatment I'm flooded with the memories of how nice and kind everyone was..my surgeon, mo, rad doc and so many of the people who worked in the support area, and the person who drew my blood before chemo. I would walk away from every treatment and appointment being amazed at how nice people were.
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Cowgirl I too have noticed the kindness and compassion of all the medical personnel I have come in contact with at my cancer center. It really does make a difference.
Beesie I agree with your comments above. It really is common sense although I seem to be lacking some of that at the moment. But I know that sugar feeds cancer so I don’t want to eat anything that may cause this tumor to grow even bigger before treatments. I love coffee with heavy cream in it and I know there are studies out there that link dairy to breast cancer and then there’s wine... The real kicker in this is that my D3 levels were in the 70s last time I had them checked and I have used Dim/ I3C faithfully for the last 12 years, and yet I got an aggressive breast cancer. It’s really hard to know if anything I was doing was of any benefit at all.
Debbie
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I believe whether or not to do neoadjuvant chemo has more to do with tumor size. Many of us triple positives had surgery first. And yes--I also was told that despite HER2+ tumors being more aggressive, they actually have a better outcome, specifically because of Herceptin.
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Ingerp
My dr did say this would most likely be treated as a triple positive cancer. I meet with the breast onc surgeon today so it will be interesting to see what her recommendations are- surgery first or chemo first. I will keep you all update as I get more information. I am unable to have radiation again since I had it 12 years ago. That may be a factor
Debbie
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Is the new tumor on the same side? If not, you can most likely do rads, I did. Left and right side rads.
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Spookiesmom,
Yes the tumor is in the same breast but in a different spot. First cancer was @ 12, new one is @ 7
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According to the NCCN Treatment Guidelines, for triple negative and HER2+ cancers, chemo should be given prior to surgery if the cancer is T2 or larger (i.e. larger than 2cm) or if the cancer is node positive. So with what appears to be a 4cm tumor, that would likely lean your doctors to neoadjuvant chemo.
Diet.... yes, you may want to make some diet changes if you have had an unhealthy diet. But take your time to learn about it before you start making changes, because much of what you hear or read, unless it's from a reliable medical source, is wrong.
First, dairy. There are studies that show that high fat dairy does increase breast cancer risk. Low fat dairy does not. That's not a popular point of view around here - I have posted the dairy studies many times and they are met with silence, because they don't fit the story line so many people are pushing that dairy is bad. But some studies have actually shown that low fat dairy reduces risk (can't remember if it's recurrence risk or new breast cancer risk; I'll have to dig around to find that when I have more time). So low fat dairy - definitely okay. And there are great dairy substitutes. I am sitting here now drinking my coffee with heavy cream - but it's a flavored almond milk cream. And it's really good.
Next, wine. There are dozens of threads around here on that. Yes, heavy consumption of alcohol does increase breast cancer risk. But moderate consumption? A minor increase if anything. Take a look at this thread: Topic: Wine? You'll see that many of us continue to consume wine, with the approval of our MOs. Not 3 glasses every night - that's not good for anyone's health - but up to one glass a night, or a few glasses a week, seems to be just fine with almost every MO.
And sugar. Another myth, although the facts are not popular with some people here. Here are just a couple of links explaining the role of sugar. Too much is bad - for your overall health - but the right amount of sugar is necessary for your body.
- From the Canadian Cancer Society (I'm in Canada so it's a link that comes up when I google):
What's the link between sugar and cancer?
The claim
Sugar feeds cancer – and it makes cancer grow faster.
The truth
Your body's cells consume sugar as they grow and divide, but eating sugar does not make cancer cells grow faster.
All cells require sugar (glucose) for energy. Your body can also store sugar to use as energy later. Your body needs this sugar to function normally. Canadians consume thousands of dietary components every day, so it's hard to pinpoint precise links between diet and cancer.
When sugar can increase your risk of cancer
Eating lots of foods that contain sugar means you're more likely to gain weight. Research shows that obesity increases your cancer risk. Obesity may cause changes in hormone levels which may also put you at a greater risk of developing cancer. A healthy body weight will be different for everyone, so talk to your doctor about yours.
- From the Mayo Clinic:
Myth: People who have cancer shouldn't eat sugar, since it can cause cancer to grow faster.
Fact: More research is needed to understand the relationship between sugar in the diet and cancer. All kinds of cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't make them grow faster. Likewise, depriving cancer cells of sugar doesn't make them grow more slowly.
This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans, which use a small amount of radioactive tracer — typically a form of glucose. All tissues in your body absorb some of this tracer, but tissues that are using more energy — including cancer cells — absorb greater amounts. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.
There is some evidence that consuming large amounts of sugar is associated with an increased risk of certain cancers, including esophageal cancer. Eating too much sugar can also lead to weight gain and increase the risk of obesity and diabetes, which may increase the risk of cancer.
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Also a triple positive but for chemo, I did Adriamycin + Cytoxin X 4 and then Taxol X 12, plus Herceptin and Perjeta instead of TCHP. Many triple positive breast cancer patients do TCHP, but my oncologist recommended AC + THP because more of her patients finished that regimen than those who did TCHP. Clinically, these two regimens are about the same but they have different side effects. AC is not for anyone with pre-existing heart conditions, and Taxotere is associated with gastrointestinal distress (e.g., diarrhea). Also, there is a very very very small chance of permanent hair loss with Taxotere. (A few women on BCO.org have experienced Taxotere-induced permanent hair loss, but most have not.)
Yes, chemo tends to work well for Grade 3 cancers -- my triple positive neighbor only managed to finish four of her six planned TCHP infusions, but she still had a pathological complete response (PCR -- all of her active cancer was gone). I also experienced a PCR, though not everyone does and there are some treatments (like Kadycla) which are prescribed for triple positives who have residual cancer after chemo.
I started chemo in July 2014 and had my surgery in January 2015. Then, I did Herceptin until December of 2015. As you can see, triple positive breast cancer is a marathon, not a sprint. You just have to take it one step at a time and not think too far ahead.
Good luck with your meeting!
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I had my MRI today and I actually got the results while meeting with my BS. I got really good news. The tumor is actually 1.8 cm not 4 cm like ultrasound said. Lymph nodes were clear. So my stage is 1A, grade 2. Because I had rads 12 yrs ago i will need a mastectomy so I will be having a BMX along with reconstruction. Then 3 months of hopefully just taxore with the herceptin. And then an additional 9 mths of herceptin. Possibly an AI at the end. If I do cold cap I may not lose my hair. Has anyone done cold cap? What’s your experience? Is it worth the hassle?
Thank you everyone for all the encouragement you have given me. I’m sure I will have more questions as I go thru surgery and chemo.
Debbie
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Good news KD Holt. Yes I had other scans - both before chemo & after. My MO believed in a PET/CT, although many do not. My surgeon also insisted on a CT with contrast just before surgery so she could pinpoint the area. And BS & MO both wanted scans 6 months after to make sure everything was gone. Then I personally insisted on another PET/CT before they removed my port two more years down the road.
Sounds like your BS is saying surgery first. It would be a good idea to meet with the MO now since that doc usually drives the bus.
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Minus Two I’m waiting for the phone to start ringing with all the appts that need to be made. I will be referred to a MO. Not sure when that will happen but I do know that all the information on my pathology prior to mri was brought before a tumor board made up of MOs, BS, RO, etc. and discussed so I am pretty sure there has been input from an MO. I go to a large cancer center and am very confident in them. I’ve been going there for many years. I feel so much relief knowing there is a plan in place
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Debbie, I'm so glad you got good news from the MRI - you were certainly due for good news!
It will be interesting to see what the MO says about chemo and whether he recommends it before surgery or after. As I mentioned in my earlier post, the NCCN Guidelines recommend pre-surgery chemo for HER2+ cancers that are >2cm. From the ultrasound, your tumor is larger, but from the MRI, it is just slightly smaller. So an MO could decide either way.
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Beesie it will be interesting to see what happens. Do they always do an MRI with contrast? Because I did have the contrast and they said that only 1.8 cm lit up with the contrast. I will be sure to ask that question though. I’m sure my ph will be ringing off the hook with all the upcoming appointments that are sure to happen. I will keep you posted!
Debbie
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kdholt,
Glad to hear that your MRI showed a smaller tumor! You would not be getting Taxotere + Herceptin but Taxol + Herceptin. That's the regimen that's been used recently for small HER2+ tumors. The good news about Taxol is that it isn't associated with permanent hair loss on one's head (though, happily, I no longer have to shave my legs). The bad news is that it is more associated with neuropathy than its cousin Taxotere. I found Taxol to be fairly tolerable, though I did have Imodium on hand and knew where every restroom in town was.
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Yup, contrast is standard for breast cancer MRIs. I had an MRI one time just to check the integrity of my implant, and for that, contrast wasn't used.
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Hi Elaine,
Thank you for correcting me on the chemo. I’m glad to hear you tolerated it well. I hope I do too. I don’t want to think about the side effects too much. In fact I’d rather not even know because once it’s in my head I fixate on it! How many rounds of Taxol did you need? Did you ever try the cold cap?
Deb
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kdholt,
I did 12 weekly infusions, but didn't cold cap. I did Adriamycin + Cytoxan first, and cold caps don't work very well for AC. But, they do work better for Taxotere and Taxol, so they may be worth looking into. There are some threads on BCO.org for people who cold cap. You can probably find them through the search function. I should say that cold caps can be expensive in the US, and not every chemo infusion center welcomes them. But, some breast cancer patients swear by them, so I'd check them out if you're interested.
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Go ahead and schedule, but please do meet with your Medical Oncologist before beginning any treatment including surgery. With a tumor board involved, we will expect them to be on the same page, but still. The surgeon’s specialty is surgery, and he/she does not decide when chemo should happen and what chemo should be given. That is the MO’s specialty.
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Yup - Like SP says - surgeon's cut - that's what they're trained to do. MO's treat your whole body. Please do meet with the MO up front.
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