My Chemotherapy Journey
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Insurance dictates what Dr. you see, well at least on my case, you don't know how many Dr. appointments reject me coz of my insurance. I'd rather not dwell on that, at least I found this hospital though does not have good reputation in general at least my surgery went well so far so good, now I am having pain mostly in my sentinel node stitch, and a bit in my tumor area and my breast lift area but not too much for me to be alarmed or take a pain pill. So far it's really just swelling that I have and even that is really not too alarming either.
I just deal with this disease day by day, I suppose.
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So I had my breast surgeon appointment today, I waited for an hour for her like what gives? Anyway, So at least it's confirmed: I have clear margins, clear nodes, BUT there's a residual. I also asked her who is going to refer a radiologist? It was her. So she said, she will make the radiologist call me to schedule an appointment. She ask me where I want to do my radiation, I really wanted the one referred by my niece but of course my husband would rather the one close to the house… so oh well. She is referring a radiologist close to my house then. Not what I want but I guess makes sense rather than driving to the city and pay for parking where my niece works.
Then when the receptionist scheduled me for my next appointment which is May, 2025…. whoa. It's almost new year…. anyway… I will have mammogram that day, then see my surgeon then….. which made me go…. huh? I see a name I don't recognize and her title is - APN. So ya I have 3 appointments same day.
I really plan to message my surgeon on mychart and ask if the receptionist made a mistake in scheduling me with an APN like what is even an APN? so I searched… and based on my research, it seems APN's will see me from now on, instead of Drs. Interesting, well I hope she is way better than my 'i don't care' team… LOL good riddance, I guess!!
I do still have an appointment with my onco though so I will ask her about the APN appointment. LOL. For me it's good news!!
The only good thing about my appointment today is she is OK for me to fly. YAY!! And even said I can start my radiation after my vacation which is next month!!!
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I seen my pap smear result today on mychart. NEGATIVE! Thank you Lord. I hope my cancer journey stays this way forever. Just all around good news, good health, good life.
The result says:
high risk HPV - negative.
Allelujah!
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Wow I just read my complete pathology result. My residual score is 2.073 which is half and half. Meaning I will have a tendency to recur faster and also have poor prognosis. But then I searched the classification. I also googled it and apparently if I have a radiation I might slow down the recurrence. So it's a confusing read and I just google EVERYTHING I see in that result.
Good news though is that my her2 + percentage is now down. I am now triple positive. But all are low percentages now. So is my ki67 score, it went down.
I also read that the radiologist said I have savi installed. Which she did tell me on my last radiation but apparently my surgeon called to confirm there is no SAVI, LOL, like what the hell.
Which honestly makes sense because you would think they will tell me if they put savi in me during my biopsy. I was just told they put clips.
That's weird then that they did not have me get a savi before surgery but then again maybe because the radiology department there is sooooo off and said I have a savi but I actually haven't…. UGH.
I guess I am thankful my surgeon didn't send me to their radiology dept. anymore, she probably know they're inept to the core.
Oh and I just found out, the arm compression I bought is actually a large size and I only need a small size and when I went to amazon to cancel it, I can't for now because it's already on the way. I will just return it and since my surgeon said I won't need it, I won't even buy it anymore.
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OK here's the pathology result:
Residual Cancer Burden: 2.073
Residual Cancer Burden Class: RCB-II
Margin Status for Invasive Carcinoma: All margins negative for invasive carcinoma
Margin Status for DCIS: All margins negative for DCIS
Number of Positive Lymph Nodes: 0
All regional lymph nodes negative for tumor
Total Number of Lymph Nodes Examined (sentinel and non-sentinel): 1
Number of Sentinel Nodes Examined: 1
Percentage of Overall Cancer Cellularity: 40 %
pTNM CLASSIFICATION
pT Category: pT2
pN Category: pN0
N Suffix: (sn)
Pre-treatment biopsy (S24-02124) - Right breast 3:00, 3cm FN:
ER: Positive (91-100%, strong)
PR: Negative (<1%)
HER2 (IHC): Positive (score 3+)
Ki-67: 20%
Post-treatment biopsy (current specimen, A4):
ER: Positive (>90%, strong)
PR: Positive (1-5%, variable)
HER2 (IHC): Equivocal (score 2+)
HER2 (FISH): Pending Ki-67: 1-5%
And this is the FISH, FFPE RESULTS
Negative for ERBB2(HER2) amplification
nuc ish(D17Z1,ERBB2)x2-3[60]
The ERBB2:D17Z1 ratio is 1.1
Average ERBB2(HER2) signals per nucleus is 2.7
Average D17Z1 signals per nucleus is 2.4
IMPRESSION
Per current ASCO/CAP guidelines, the nuclei scored in an area designated as invasive tumor in this right breast partial mastectomy specimen show no evidence of ERBB2(HER2) gene amplification.
The ERBB2:D17Z1 ratio is 1.1. A proportion of tumor nuclei scored (>30%) had additional copies of chromosome 17 suggestive of polysomy. Additional copies of chromosome 17 are not typically associated with ERBB2(HER2) overexpression in breast adenocarcinoma.
No idea what that FISH result means.
oh and the PAP smear is negative too!!
Negative for intraepithelial lesion or malignancy
Atrophy with non-specific inflammatory changes
And my PCP wrote a note that my pap smear is normal!
YAS!! Allelujah.
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OK like I said, The results are confusing like Literally half and half. Some result say I have good prognosis and low recurrence like the ki-67 new low score and
pT Category: pT2pN Category: pN0this one I think said if I have radiation then I will slow the recurrence.
But then again,
Residual Cancer Burden Class: RCB-IIwhen I searched says I have poor prognosis and high recurrence, like wow. And then I have no idea what the FISH result even means, I just hope my onco will decide the best treatment for me. Do I even need a radiation though?
Now I am waiting for my genetic test result, I hope that one helps my cancer doctors decide the right treatment for me.
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Oh wow. I searched that FISH result:
A negative result for ERBB2 (HER2) amplification indicates that the tumor does not exhibit HER2 gene amplification or overexpression, and alternative treatment strategies may be considered.
WHOA!
Implications
- Treatment options may not include HER2-targeted therapies, such as trastuzumab (Herceptin), pertuzumab (Perjeta), or lapatinib (Tykerb), which are typically used to treat HER2-positive breast cancers.
- Alternative treatment strategies, such as hormone therapy, chemotherapy, or targeted therapies targeting other molecular pathways, may be considered.
- Patients with negative HER2 amplification may have a better prognosis compared to those with HER2-positive breast cancers.
SO I wonder if my onco will treat me with kadcyla now. It seems I am now ER+ Pr+ her2- ….???!!! OH nvm. kadcyla is a her2+ treatment. I wonder if I will only do radiation treatment and no more infusion? I hope so but it means I will have another surgery - removing my chemo port. I probably never should have it installed in the first place. Oh well. I only use it for 6 chemo sessions. I hope I am right that I will only have a radiation treatment and that's it!!!
I just find it odd that in one of the results I posted it says the ER status is unknown when in both pre and post biopsy ER has the STRONGEST result. LOL, WOW.
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Looks like I will be put on Kadcyla. Just received a letter that they are approving this meds. But I thought my her2 status changed. I have to research what equivocal her2 status means. And I am leaning on not having radiation. The radiation threads I read here are scary. And side effects of cancer treatments are my number 1 enemy.
Oh jeez this is frustrating. I feel so much better now and now I am going to living nightmare hell territory again. Gosh. So annoying.
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FyI, I found radiation easy peasy both times. ZERO side effects.
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Oh thank you so much. reading radiation threads here seriously want me to not have a radiation. Not sure if you know how to interpret pathology result. But from my understanding on my research on my pathology result especially the FISH result. It seems I am now her2-.
So I am wondering why my onco will still put me in kadcyla which is a her2+ meds.
pre surgery I am Er+ Pr- HER2+
POST surgery I am now - Er+ Pr+ HER2-
What is typical treatment for that?
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i think for the most part you are going to hear from patients that have something to complain about. The others don't comment. Radiation is scary but so helpful.
i don't don't understand how her2 can flip that fast. Seems like Dr already decided to give Kadcyla since he's hechecking insurance approval.appeova good luck.
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Yeah my first word to my onco yesterday - do I really have to have radiation? LOL. She said it's advised to do radiation to take out remaining cancer cells. And she said I have to discuss it to the radiologist. and I will. I honestly would rather not. And she said that yes currently there are studies if radiation can be skipped. So ya I hope the radiologist will be OK with me not goin to it.
And I ask her about my her2 status. And she looked at the pathology result which is equivocal and she said the FISH is pending and I told her. I seen the result and I said it says NEGATIVE, so honestly that means my HER2 status is now negative.
But she said she is still treating like my her2 is positive coz that is how my treatment started. She also said doing something about my hormone status. She said she will prescribe me something for the hormones after my radiation and I really want not to have radiation but. SHIT, I don't know anymore.
So I had my first kadcyla infusion yesterday. And that's all I have, I was given benadryl and tylenol and I think the infusion only took 30 minutes but I have to be monitored for 1 and a half hours!!!! LOL. Wow.
Thank God, I had no reaction. But last night, my hands and feet are kind of sore. Today this morning it's not sore anymore and I am wearing compression socks no idea if that helps. But whatever.
By the way Happy Thanksgiving!! and To anyone reading this!
I wish us ALL, well!!
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pneuma,
Regardless of your mo and the radiologist, you, as well as every patient, has the right to make tx choices. No one can force you to have treatment. Your doctors are not your bosses and the choice is always yours. That being said, I would listen to pros and cons as presented by the radiologist before making a decision but please understand that no one is forcing you to do anything. I also want to reiterate that using comments on bco to support your concerns about rads is not a fair picture as most do not post when things are going as expected. People post far more when they have issues. These issues are well known so there should be no surprises. I had rads to my bone met and had absolutely no problems. Does this mean you won’t? No, that is simply not predictable. Take care and happy Thanksgiving.
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I never wanted ANY of this in the first place. It's my husband. It has always been him. If it were up to me, I would stop NOW. I feel good. I like the pathology result. But my husband is getting mad at me. He said I was not supposed to skip my meds. Fuck ANY cancer meds. He knows I never believe in any of this shit I have been through. He knows I believe there is no cure for cancer. We were in argument on the way home from my infusion. I told him YOU DON'T KNOW~~!! I suffered 4 months with that boil infection. You made me not skip my infusion when I have an active boil. Just coz I wasn't whining to him with ALL these shitty side effects I have been through.
I told him I am scared. VERY scared. I feel good now and then I am going though this inhuman treatments again. Fucking radiation to my body to 'cure' cancer Fuck that! I hate science!
Sorry, I know this is more like a rant. but cancer meds are ALL a joke to me. Just money grabs. I really hope they stop this masquerade of treating cancer. There is no cure! Fuck you science. LOL.
Sorry… But that is my belief.
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pneuma,
My heart aches for you. It must be difficult when you and the person who supports you are on different pages. Is it possible for the two of you to attend joint counseling sessions to help you come to a better place?
I can only speak to breast cancer and can assure you that it’s not an automatic death sentence. As a matter of fact, about 70% of those treated will not recur!* That is not perfect, but not a death sentence by any stretch of the imagination. As to science, hate it or love it, it is what it is and it is the only thing I’ve seen with data driven evidence to show both its efficacy as well as side effects (these are not deep dark secrets). Whether you are comfortable with the idea of conventional medicine or not, there is data/evidence/history to back up treatments and data that shows amazing advances in survival and even cures (look at childhood leukemia and other cancers which previously were death sentences ). Alternative treatments come with lots of anecdotes but little in the way of evidence of efficacy beyond stories, which are not data! It is very easy to find stats that show just how much progress has been made and it has been due to conventional treatment advances. Again, not perfect but always evolving.
I’m fairly certain that every one of us would love side effect free treatments that cure breast cancer but in the absence of such, we all make choices and evidence based medicine is what most choose. You don’t have to make that choice and no one can force you, not even a husband but I think you might both feel better about the situation if you could speak with a therapist or counselor who can help you come to some common ground and give you a more realistic understanding of your particular situation.BTW, these boards are filled with folks who have breast cancer and haven’t died (bear in mind that most folks stop posting after completing treatment and just go on and live their lives). I have been stage IV for 13 years and live an almost completely typical life .
Pneuma, your feelings are your own and I don’t mean to invalidate them but you make assumptions that are emotional and not fact based. I hope that understanding the facts about your tx and overall situation will help to alleviate your stress. Take care.*This does vary by stage but the majority of those dx’ed with bc do survive!
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@pneuma, I am so sorry you are going through this experience. Can I say that you are stronger than you think? You have gotten through so much. That said, everybody is different and everybody has to make choices - the trick is to make those choices when your mind is cool and not filled with emotion. Sometimes emotion can make decisions very difficult. I know that is easier said than done, as I am incredibly impulsive and quick to anger - but you can train yourself to take a breath and not make hasty decisions in the heat of the moment. It takes work, but I have found that it is worth it. Wishing you all the best from Australia.
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Hi. Looks like we have same breast cancer. My ER is 91%. My PR is 1-5%. My her2 is equivocal but when they did the FISH test, it's NEGATIVE. so that means I am now HER2 -. I told this to my onco. But she told me she is still treating my cancer like it's HER2+ coz that's how they started treating it.
I mean kadcyla is for HER2+ and according to my research on my pathology result. My HER2 status makes it complicated. And that treating her2- with trastuzumab like kadcyla won't do ANYTHING. So really this is what worries me.
But of course since my husband trust my onco, I don't, I had my first kadcyla infusion last Wednesday.
My question for you. What treatment did they put you in?
THANKS!
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Well, yesterday, we had our thanksgiving with my niece in her house she's the radiology assistant. She even whipped out her radiology book. LOL. I asked her what's the best position for radiation, she said supine. Coz in prone position my boobies will be hanging out LOL, what? And that if I am afraid of heights it's not good coz they will lift me up or something.
But anyway, she lectured me that radiation will help zap the remaining cancer cells. Ya right. but it also can zap my heathy organs,, whatever!!
But the only thing that came good with that conversation is that she made me understand my husband's perspective. The thing with my husband is he worries a LOT. He worries more than me!. I told him please, I just want to be happy. You worry too much. I don't even want to think about my disease, I just want to LIVE how I want.
Like she sides with my husband how I don't have to delay my treatments. I just like that I am not annoyed with my husband anymore. I really feel like he is pressuring me to do something I don't want but he just think he is doing what's best for me which is go through my treatments without delay no matter what, LOL. FML.
And as you said, it really is hard that me and my husband have different pages on how to go about my cancer treatment. It REALLY sucks!
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@pneuma - I am stage iv. At the moment I am on hormonal treatment - Ribociclib and Letrozole. In Australia they will not remove the breast tumour if you are stage iv. The phrase they use over here is that stage iv treatment is palliative/management, not curative. This means that my onc team will give me treatment to manage and hopefully slow or even stop the progression of my cancer for as long as possible. But the hard fact is that cancer will most likely be the cause of my demise. My key focus and priority at the moment is my quality of life - which, so far, I have had. I am even back doing my resistance training - which is my 'zen' place. It has helped me physically and emotionally enormously.
So I still have the tumours - radiation will generally be used to relieve pain for me. However as so far I don't have pain to speak of - only a few "pings" which last seconds, radiation hasn't been mentioned. This is why I have not commented on your radiation treatment - I have no knowledge of what it is like - but I know what it is to be afraid of the unknown. Others on this forum have far more experience about radiation. Take care and be kind to yourself.🌻
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Thanks. Sorry about your stage 4. At least you are back to your zen place. I learned something new though that they use radiation if you experience pain instead of painkiller. Interesting, but also probably makes sense that you don't live in painkiller capital of the world - USA - Well that's just my assumption.
I wish you well.
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Many thanks, Pneuma - the diagnosis is the diagnosis - I can't change it so I have moved on. I do not worry about it now. I am also a bit different in that a great many of the traditional painkillers do not work for me, such as oxy-codone etc. It is something to do with my pain receptors. Bizarrely, aspirin works marvellously but I am not supposed to use it with Ribociclib, so I am very lucky that I do not need it at the moment.🌻
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And your assumption about rads is not quite right. First of all rads at stage IV is given for both pain relief and to kill the met that’s being radiated. I never had any pain so the intent of my rads was to kill the bone met, which it did. Rads are used to eliminate the source of pain, if appropriate. This is not used as an alternative to painkillers, which mask the pain, but to eliminate the source of the pain.
None of this is really relevant to you as the use of rads in lower stage patients is completely different than for stage IV patients. For lower stage patients, rads are intended to mop up any stray cancer cells in the chest/axcillary area. Radiation scatter is possible but they have come a really long way in minimizing it (but not perfect). As to your position, please let your doctors make that decision. It is dependent on what areas they’re aiming for. The rads table can be moved, but you will not be in a very high position and it’s unlikely it would trigger fear of heights. If concerned, consider using an eye mask. Again, rads at stage IV is a completely different thing which has nothing to do with your situation.
Lastly, I don’t know if your niece is necessarily siding with your husband but she is siding with the facts. Your feelings are valid but some of them are based on misinformation, misunderstanding and a firm belief that you are likely doomed. Again feelings are important but don’t let them override facts. Take care1 -
So, I am liking my onco for now. I left her a mychart msg if I am eligible for oncotype testing. She called me - And she said nope. That sucks.
I also told her about my research on my pathology result and if I am on right cancer treatment. She explained to me why she still need to give me HER2 treatment even if currently I am her2 neg. Her nurse also linked med publications why kadcyla is still a standard of care in my case. I just read it. I feel like it has contrasting statements but… protocol is protocol I guess. Oh well.
Their basis on my current treatment is based on KATHERINE study. Hope for the best I guess. Tomorrow is my radiology consultation I still will ask if I really need it. But like my husband said, good luck having them said no.
I have been reading the radiology threads here and started putting lotion, petroleum jelly, and soon aquaphor (I will alternate on them whatever I feel like using) that I told my husband to buy for me. I will follow the ladies suggestion to put it 3x a day. I hope it will also help me not burn my skin.
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So I swear if cancer don't kill me, it's the medical bills that will. And I hope this is not the start of the avalance because it will make me definitely not live anymore and just stop everything.
I received my non emergency ambulance bill. Whopping $4500 for a less than 5 minute ride. That's why I told the urgent care doctor I will drive there but she said no. I knew… I knew this inevitable WTF worthy overbilled ambulance bill will bite me in my arse.
If there's anyone reading this PLEASE how do I dispute this?
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I bet they didn't submit it to your insurance. When I broke my leg, I had to use an ambulance and got a $2000 bill but after it was submitted I only had to pay $200 or so. Think it is some kind of scan where they try to trick you into panicking and paying an outrageous bill. For the future, I think you can refuse an ambulance and just get yourself to a hospital.
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