HER2+ Recurrence
I was initially diagnosed with HER2+ IDC & DCIS in 2017. I underwent chemo, radiation, and a lumpectomy and was completely in remission. In January 2020 I had a DMX after a DCIS diagnosis. I finished complete reconstruction in October of last year. Now, I am facing another HER2+ IDC diagnosis in the limited amount of breast tissue remaining on the same side as the originally diseased breast.
I'm anxious to hear other survivors' experiences with HER2+ recurrence. What was your diagnosis, treatment, prognosis?
AND NOW FOR THE RANTING PART OF THIS POST...
Part of me wonders if half living through 4 months of chemo hell will be worth it if I am just going to ride this roller coaster every few years. Should I just retire and spend my savings? I am beginning to wonder if I will live long enough to enjoy what I thought would be a long and comfortable retirement. I am 53 years old, never been married, and no children, so I don't have anyone else to lean on financially, but I also don't have anyone who is relying upon me financially. 🤷♀️ /RANT
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bluesfan4life, sorry about your recurrence. Glad you could rant a bit, too. Sometimes it feels better just to get these things out on a digital page.
I can’t give you any advice about whether to retire or live off your savings, and maybe your question was just rhetorical.
I can encourage you to read the amazing survival stories of many on this site. The HER2+ immunotherapy drugs have been a game changer for many of us. Although I’ve only been NED for a couple years, I take courage from denny123 and others that have done really well for decades.
((Hugs)
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Thank you for your post. I thought I was going to be one of those with long-term disease-free survival. C'est la vie
I failed to mention that I had six rounds of Perjeta and one year of Herceptin with my first diagnosis in 2017. Those were the gold standard immunotherapy drugs at the time. In my reading, it appears that there may be some additional ones available now. I guess I will find out when I finally get to see my MO.
I had my last Herceptin treatment in January 2018. Less than 5 years later, the HER2+ is back. The lack of response on this post makes me think that HER2+ recurrence is not common or those people have died and are no longer posting. (This is where my mind goes when I can't get answers. 🥴) I can't seem to find any research or data online either, so I am in that very frustrating spot of knowing very little about everything. Can you tell that I don't do well with uncertainty? 😂
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I would attribute the lack of response to the low number of ER/PR negative, HER2 positive cases and the generally very strong response our sub-type has toward treatment. From some of the reading I have done in the last couple of years, it’s only 4% of cases and is now considered the most curable version when caught early. Which of course makes your recurrence that much more sucky.
My MO has told me that the likelihood of a cure for me after PCR to treatment was 95% and that they would consider me cured 3 years after surgery. Of course that still leaves 5% of the population to recur, and it sounds like you are one of the unlucky few. I have 12 more months to make it to my 3 year mark, and I am definitely hoping to make it without a recurrence. Honestly I saw your post a few days ago and it stressed me out just to think about it.
I’m sorry. It sucks so much. I will be curious to hear how they plan to treat you though. You know… just in case I am also one of the unlucky few. There is a semi-active thread for our sub-type if you want to move over there. I’m sure the others would also be interested in your treatment plan. I have an alert on they thread so if you postthere I will see it and check in.
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Hi,
Her2+ has one of the best line of medicine out there as far as breast cancer is concerned. I have seen women on this site being on Herceptin for many years and living their lives. Of course there are always some unlucky ones that treatment is not going to work but stats are in favor of this type. Generally having cancer means we have been unlucky regardless of its type. But having her2+, nowadays, is considered being in luck while being unlucky.
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I know how you feel as I am in a similar privat situation as you. I am still NED going on 6 years, but going for my check up and can feel a pretty large bump under the arm so a bit nervous this time. No one knows what the future brings but I would count on making it threw one more time. I think it is important to keep hope but understand you.
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Thank you, melbo. When I was first treated, it was all about 5-year survival, so when I got past the 5-year mark, I breathed a sigh of relief. When I had my MRI and my doctor told me the chance of recurrence was 3 - 6%, I thought to myself that that for sure meant it was coming back for me. I have a tendency to always have the rare and unusual cases. If she had told me 20%, I probably would have been in the clear. 😂
I pray that you have a healthy year and get into that safe zone!
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Thank you, kattis894. Prayers for a good checkup and no bad news! As I get more information and move forward with treatment, I find myself in a better frame of mind. I am still waiting to meet with my MO, however, and I think I will be in a much better place once that happens.
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Treatment update. I met with my MO and the plan is to have 1 year of Kadcyla. That assumes, of course, that lymph nodes are clear. I have surgery on 1/17 to excise tumor and have lymph node dissection. MO wants me to have CT, PET, and Echo before surgery. Echo is, of course, necessary to make sure that I can handle the Kadcyla. I'm thankful that she wants the CT and PET scans; I want every possible test to make sure this cancer hasn't moved anywhere else.
I am 6 years removed from my last HER2+ diagnosis. My MO is confounded, not by its recurrence, but by the timing of the recurrence. She said recurrence typically occurs soon after the first treatment, usually within 4 years. That's me, always doing the unexpected. 🤪
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I'm over eight years out from my diagnosis of triple positive breast cancer, and have thankfully been NED. I was also told that once you're past the five year mark, the rate of recurrence is low.
Alas, my next-door neighbor had a recurrence of HER2+ breast cancer a year after her initial diagnosis. She did a year of Kadcyla. Sadly, it recurred in her lungs. She tried Enhertu, but quit after the first round because of the side-effects. She recently had her lung mets radiated (they shrunk), and is just taking it easy for now. If her mets get worse, she may try additional treatment. I should note that she is BRCA2+, so was at a high risk of recurrence.
It's a crap shoot. My neighbor is very healthy and walks two miles a day. I suspect her genetic situation has made things worse for her.
((Hugs))
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Dawn — recurrence after 6 years sucks! I’ve tracked references to Kadclya off and on on the site and side effects seem to be mixed. I hope you respond well and have few side effects. I would also be curious to know if the pathology in the tumor is still ER/PR negative HER2 positive or if your cancer switched
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I'm still ER- PR- HER2+, same as 1st time.
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the only good news is that the her2 targeted drugs are still an option. But that’s a cold, damned comfort. I frequently try to use statistics to reassure myself that I’m in the clear, but every time someone tries to say I’m cured or it’s all behind me I immediately reply “not yet” or “I hope so” — because the truth is we really don’t know.
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So sorry to hear that this has happened to you, BluesFan. It has made me think about the whole subject of recurrence with our subtype. My understanding was that we had a higher chance of distant recurrence/metastasis in the first 2-3 years after diagnosis (My oncologist starts the clock at diagnosis). I've never really heard anything about local recurrence. There aren't many of us out there so I don't know how common it is.
I do wish you the best and hope that your treatment takes care of it once and for all!!
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Agree melbo! In my opinion, one is never truly cured of cancer. Maybe that is me being overly pessimistic, but, even if the disease itself never recurs, cancer forever changes who we are physically and emotionally. I am sure that is true of any serious illness, but cancer is the one I can speak to personally.
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Thank you, dutchiegirl. My MO is baffled, not by my recurrence but by the timing. As you said, recurrence typically happens within the first few years. I was 6 years since the 1st HER2 diagnosis, 5 years since I completed my treatments. We both thought I was in the clear.
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Hi bluesfan4life - I'm sorry about the recurrence. I am also ER- PR- HER2+, and read a bunch about locoregional (breast and nodes) recurrence recently, when making my treatment choice about radiation. From what I read, it does seem ER- PR- HER2+ have a higher locoregional recurrence rate than other types. Tho with the advent of Herceptin, that rate may be slightly lower than triple negative.
I saw that your plan is a year of Kadcyla. Have you asked your MO about possible clinical trials? The reason I ask is, when I was suspected of having residual cancer left after chemo, I was told about trials for Enhertu, and for Tucatanib-plus-Kadcyla. I believe these treatments are expected to be more effective than Kadcyla alone.
Did you have a complete pathologic response, at your initial lumpectomy?
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Yes, I had a complete response to TCHP but still had lumpectomy, radiation, and continued Herceptin for 1 year. That was 2017-2018. It was never in my lymph nodes. I still have have my lymph node dissection. That is scheduled for Tuesday, January 17th. I have read about Enhertu but have not discussed it with my MO. I will certainly keep it in mind. Thank you!
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Ugh, you have been through the wringer! But it's good to know that the initial invasive cancer was so responsive to chemo the first time around (I know DCIS is always more resistant).
Why are they doing an ALND? Is that just sort of standard, for local recurrences?
Can I ask where you are being treated? I grew up in STL and may yet end up there again. You're welcome to PM me, if that's better!
-Sarah
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bluesfan- I just wanted to say that I'm so sorry you're going through this. I'm grateful you've shared her. I'm triple positive, 2 months out of chemo, and like anyone else with Her2+ BC have had my thoughts highjacked wondering about recurrence. I've been terrified that I haven't seen many people post about it because they didn't make it.
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I do believe LN dissection is standard of care. Just because it didn't spread to the lymph nodes the first time doesn't mean it hasn't this time. I am also getting a bone scan just to be safe. I have already had a CT. Thankfully, insurance will cover all of that, and I would rather be safe than sorry.
I am being treated at Mercy. They've been great! If you are familiar with St. Louis but haven't lived here in a while, that is the old St. John's Mercy hospital north of Hwy 40, but also now includes the old St. Anthony's hospital in South County. They each have fairly brand new cancer centers, and there are in multitude of Mercy clinics and satellite offices in the area as well.
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Thank you, and you're welcome! That's exactly where my mind went. My MO eased my fears a little, but it sure would be great to hear from some survivors.
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bluesfan4life Yes I do remember St John's! During the pandemic I took some relatives there for vaccines, I could not believe how much it has expanded!
Still tho -- if it were me -- I might try to get a quick second opinion at Siteman. They might have the best access to clinical trials, which are great for us HER2s, since treatment options are developing so quickly. Though I know the whole BJC system can be a hassle, and I'm mortified at their safety ratings (most of my family has worked there at some time or another).
My own oncologist -- actually her "fellow" who is also a HER2 researcher -- once made an offhand comment that "chemo will be what cures this cancer". I just can't get that out of my mind. Unfortunately there are no good clinical trials for my situation -- I would have loved a course of tucatinib!
Here's another question! Your signature info says you were given nodal irradiation despite the nodes being clear. Was that just to be extra careful? Or was it for a particular reason? I hope it's ok to ask - I recently had to choose whether to have that, and chose not to, but it was a tough decision!
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BJC is not in network for my insurance. Still, I know Siteman has a great reputation, but I started this cancer journey about the same time as others who went to Siteman, and they all died. I know that's a ridiculous attitude - we had different types of breast cancer - but I can't get that out of my head. I've been very happy with Mercy, and I love my MO. If she were going to try the same old treatment again, I may have second thoughts, but we are going the Kadcyla route (assuming LN are clear). I guess I don't see the benefit in a second opinion at this point. 🤷♀️
Incidentally, I've been happy with my breast surgeon at Mercy as well. She is the one who recommended that I get an MRI just to check on things - I had no known symptoms and that is not the standard of care, but she does that for all her patients. She probably saved my life as that is how they found the HER2 recurrence.
As to my radiation history, I am not sure that I have that all noted correctly. This new website left everything kind of wonky, and even I have trouble figuring out what treatments I had. 😂 When I had radiation, they radiated the whole breast as well as under my arm to cover the lymph nodes. At least that's what I recall them telling me. It wasn't a separate treatment. My lymph nodes were clear, so this was just preventative as I opted to have a lumpectomy at that time.
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My neighbor who has done both Kadcyla and Enhertu found Kadcyla to be way more tolerable than Enhertu, which caused a lot of nausea and other discomfort. I hope that Kadcyla does the trick for you!
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Thanks bluesfan4life! All of what you said, about treatment venues and second opinions etc, makes perfect sense to me. And it sounds like you and your oncologist are on the same page with treatment options! You could probably see that I share some of your trepidation about Siteman/BJC, and I think you are smart to listen to your gut feelings about stuff like this.
I didn't realize that the recurrence was found by MRI! That is great luck (I mean, great luck, given the bad luck of having the recurrence after doing everything right).
Thanks for explaining about the radiation -- I think it is common nowadays to sort of include the lymph nodes in post-lumpectomy whole breast radiation. FWIW my radiation oncologist seemed to feel that my chance of local recurrence would be lower with lumpectomy+whole breast radiation, rather than mastectomy. In fact, both radiation oncologists I met with seemed to agree on that.
So that is interesting. And it really shows you did everything right, from the get-go.
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Thank you, elainetherese. My MO seems to think that I will tolerate the Kadcyla better than I did TCHP. I was so sick after each infusion. I handled the solo Herceptin treatments much better, so I'm going in with fingers crossed.
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Finally got my pathology back and met with my MO today. The margins are all good after surgery but she is concerned with the high grade of my HER2+ and DCIS, especially considering that I had full chemo, radiation, and double mastectomy previous to this diagnosis. We discussed my treatment options, but she is hesitant for me to go through chemo again because I was so sick the first time. She encouraged me to get a second opinion and gave me a referral to Siteman Cancer Center here in St Louis, but they refuse to see me because they are not in my insurance plan and will not allow insured patients to pay out of pocket (which I repeatedly indicated I was willing to do). I am both furious and dejected. It is unconscionable to me that a medical institution, particularly one that is supposed to be among the best in the country, will refuse care to an out-of-network patient who is willing to pay. I understand that they have a business to run, but this is so very frustrating. AAARRGGHHH - Why won't this cancer stay away?!!
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ugh — that is frustrating! Is there anywhere else you can go for a second opinion?
Would the no chemo include kadclya? What would the plan be with no chemo? Just H&P?
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Melbo, I am going to look into other options, maybe MD Anderson, Cleveland Clinic, Mayo. I am just so despondent that I don't want to do anything other than curl up in a ball and let the world take care of itself.
My MO said that I cannot have Kadcyla and chemo at the same time. I guess because Kadcyla has a chemo component. So, if we do go they chemo route, then it would likely be TCP (taxotere, carboplatin, perjeta), followed by Kadcyla. When I went through chemo the first time I had TCPH, with the herceptin continuing for one year. If I don't do chemo, then we had originally talked about Kadcyla for one year, but that was before I got the pathology back. That certainly is still an option.
My MO told me that the issue is the timing of my recurrence. It has been 6 years since my first diagnosis, 5 years since completing herceptin. She said there is no data out there to advise on my particular situation because HER2+ recurrence generally occurs within the first few years. I already lost most of my hair, including my eyebrows and eyelashes, permanently and have peripheral neuropathy from the first chemo treatments. She doesn't want to put me through the pain and suffering and potentially additional forever side effects if the chemo isn't actually going to help me. That is the reason why she recommended a second opinion at a research institution. She is hopeful that maybe someone has seen cases similar to mine.
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Dawn - please don't give up. HER2 recurrence (even metastatic disease) is very treatable now. But if you let things go without treatment, I believe that may put your life at risk.
It sounds like your oncologist doesn't have deep expertise with HER2, which is why she wants a second opinion.
Your situation is actually not that unusual. HER2 often recurs before 5 years, but lots of people recur 5 or 10 or even more years out. And TCHP makes almost everyone super sick, and neuropathy is typical!
I don't think they typically give TCHP a second time. It's usually something like THP, or Enhertu/Kadcyla, which are way easier to tolerate. Speaking of which, I do not think TCP is an approved protocol - I hope your oncologist meant THP.
Anyway - there are standard treatment protocols for recurrence. You just need a second opinion with someone who has expertise in this type of cancer. Have you tried MoBap (I know it's part of the BJC system, like Siteman, but may have different insurance affiliates)? I am at Dana Farber in Boston - I know they have a well organized "second opinion" program - why not call them up, and see if they could do an e-appointment?
Can I ask who your oncologist is? You are welcome to PM me if easier.
I've been following this post, and just would hate to see you give up or fall through the cracks.
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