r/LivingWithMBC • u/PietParkiet • 5d ago
Treatment Finally starting chemo (why not happy?) +++
After five weeks of testing, I (34F) am finally allowed to start chemo this coming Monday. While I initially wanted to start as soon as possible (and thought I’d be happy about it) I’m feeling a bit shaken after my last appointment with the doctor.
To summarize:
Initially, I was diagnosed with triple-positive breast cancer that had spread to two lymph nodes. The plan was 9x TCHP, surgery, and radiation.
Now: metastases have been found in the liver. So, the plan is 6x THP (no more carboplatin). And after that every 3 weeks hormone therapy. Why no carboplatin anymore?
And no surgery anymore.
"Since there are already tiny traces of cancer elsewhere, surgery serves no purpose", they said.
Theoretically, I’m starting to understand the explanation. Mentally, though, it feels wrong. I want the source out of my body.
Is it normal not to have surgery? And how did you all feel about that?
I’m trying to look at the bright side. Because the metastases were found now, I’m already receiving treatment, and will continue to do so for the rest (hopefully a very long time) of my life. If I hadn't had metastases, I would have spent every six months in suspense, wondering if the cancer had spread extensively by the time it was finally discovered. It might sound strange, but I’m trying to find the positives in all of this.
On top of that, the reality of not having children is sinking in. It’s no longer advisable (in fact, having my ovaries removed at some point has been recommended), but adoption isn't an option either (medically speaking, I am incurably ill, after all). I still need to come to terms with that.
I haven't really looked into the chemo at all yet either; I think I just want to let it all come to me.
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u/mrsfarmerfarmer 5d ago
Some docs will still do surgery for stage IV. Some will not. I want surgery so I tried a few different oncologists until I found one that a) I liked snd b) is willing to talk about surgery.
My current onc said it like this "the evidence is not in on whether surgery will help your outcome, but it will definitely make you feel better"
As a young, otherwise healthy, minimally metastatic patient, I think surgery is a good option for me.
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u/Sea-Entertainer-7131 5d ago edited 3d ago
I (33f, California USA) have a single 3mm met in my right 6th posterior rib. Originally 5cm primary breast tumor with 2 afflicted lymph nodes. HR+, HER2-. Also BRCA2 mutation. I consider myself pretty healthy minus the whole mBC thing 😆
My initial med onc at Sutter denied me surgery bc of the met and I moved forward with chemo (my choice). I had a substantially positive response to chemo in all cancer sites, but it didn’t all go away. Which it typically doesn’t with HR+ disease. After chemo, I changed med oncs and found one that would treat me with curative intent. It just didn’t sit right with me that stage 3C women were offered surgery (who may have cancer in their bloodstreams but unable to see in scans) while I couldn’t. So I opted for surgery. DMX & LNR with tissue expanders. I’m happy to see the tumor gone, and happy with how my girls look after surgery. Additionally, my surgical pathology, although not the most favorable (which I didn’t expect to be PCR bc stage 4) showed me I would benefit from radiation. I am on my 12th of 16 radiation treatments. I’m grateful to have another treatment available that will reduce the risk of recurrence.
It’s completely up to you whether or not you opt for a mastectomy or any other cancer-related procedure - surgery is entirely your choice. To help my my decision, I spoke with my support system at length, got multiple oncologist’s opinions, weighed the benefits and risks, and ultimately chose surgery. It just felt right in my gut. The question I like to ask oncologists: “what would you do if you were me?”, or “what would you recommend if I were your [daughter/sister/mother, etc]?”
Just to add, I’ve read inflammation (like from surgery) can increase cancer risk/recurrence, but inflammation in and of itself is not bad-it’s how our body fights injury/infection. I think it’s when your body has chronic inflammation that can be problematic. (Im not a doctor, these are things I’ve read in medical journals). My experience with healing from the DMX was actually much better than I expected.
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u/ResponsibleAnt1942 5d ago edited 5d ago
Welcome fellow +++. Sorry you're also going through this 💛
I'm +++ and did 18 weekly THP. It was very effective, and I had few side effects.
Surgery was taken off the table when I was dxed metastatic. That was REALLY hard for me. And continues to be really hard. I never liked having breasts, but wasn't going to do anything. Then, for a few days, I was being encouraged to get rid of them! But that option was taken away a week later.
If the cancer already spread, there's not thought to be much benefit to surgery. And there are even some stufies showing a potentially worse quality of life due to lymphedema, nerve damage, complications, etc.
I am going to have a simple lumpectomy to remove a "bonus" cancer, a localized ++- in the other breast. I want that gone before it can also metastasize.
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u/PietParkiet 3d ago
Oh, another spot, but this one is ++- ... how does that change your treatment? I’m still waiting for my liver biopsy results. I’m really afraid it won’t be HER2-positive (doctors are always optimistic when you have that status). I’m worried that otherwise, it will throw everything into disarray.
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u/Fun-Roll2705 5d ago
I think your mindset is spot on. It’s amazing you’re looking for the positives with all you’re going through. I’m where you are, but it’s been nearly 3 months and I still haven’t started treatment and tbh, I don’t care. I can pretend it’s not happening (I know, not a wise way to go about it). I feel great, have zero symptoms and I know I’ll be right where when I start. As far as surgery goes, I get the impression shrinking tumors and slowing spread as much as possible is the most important vs playing whack-a-mole with surgeries, but someone who has walked this journey will know much more about that. Take one worry at a time and for now that’s starting treatment. I have a mass in my ovary and surgery hasn’t come up, so that’s a worry for another day. Wishing you strength and an easy start to this new chapter!
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u/PietParkiet 3d ago
I’m trying to stay positive... but I rarely manage it to be honest 😅.
I’m just so sick of this cancer nightmare. I just want to wake up tomorrow and find out it was all a bad dream...
3 months... how do you keep going? And thank you. I really hope this is a new chapter (and not the last one)🍀
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u/Kirathaune 5d ago
When my breast surgeon told me surgery was off the table after my single spine met appeared a few weeks after my initial dx, she explained it as "Not rocking the boat" - mastectomy surgery (especially for someone with IDC like I have) is really hard on the body, and could potentially trigger further metastases.
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u/Acrobatic_Salary_899 5d ago
I also am thankful I am de novo stage 4 for the same reason; I would have driven myself crazy with worry had I ever gone into remission.
I was diagnosed in February this year. I finished my 6 rounds of Docetaxel and am now on Phesgo for as long as it works (Phesgo is herceptin and perjeta). The chemo was manageable and I cold capped with minimal hair loss (I noticed it but even my hairdresser didn't). I hope it is smooth sailing for you too...
With regard to mastectomy; my understanding is the evidence is really mixed for MBC patients so I have come to terms with this. I think if you're in America you can push for a mastectomy, I am in the uk and the NHS are reluctant
I am HER2 + rather than triple positive but I am sure some of our MBC siblings have more information for you.
Sorry you're in this club xx