So, yeah, I see you're about to start rads and you've had MX with recon.

I was stage III occult- in its own way, kinda aggressive, so I can relate a bit to the unease with what your onco said. But I'm 3 years out from dx, so I'll tell you what the over site has been, in spite of no labwork or scans as part of the protocol of followup:

Your next phase of tx is going to involve very close scrutiny by your rads onco. Mine, I happen to trust more than any other member of my team. They are crazed with the idea of preventing the possibility of a local recurrence ( which, or course,would be the gateway to a distant mets). Your nodes will be blasted in the process of rads, btw.

33 sessions from now, your rads onco will keep you on a pretty tight leash the first year or so. She will palpate your foob and axillar like nobody's fool. She will explain that those new lumps and bumps appearing are scar tissue, ribs(you have no fat over em anymore) and anomolies that appear as your swelling goes down from rads and surgery. She will order ultrasound if anything g is in question or even if it's to allay your concern. All the while, you'll see your surgeon every three months and she'll do the same. Call for anything. These two are the best in your group for follow up.

It's important to remember a few things:

1: your Med onco has nearly completed his job- chemo is finished, you are trip-neg and probably not going to have additional medication as tx, this is his only job, the medicine arm of tx.
2: your ps will tell you, if you twist it out of him, that virtually all your tissue-skin, pectoral muscle, any shred of breast fat, has been pushed OUT to the surface, riding atop your implant. As I said, my cancer was occult, no tumor formation. I've been told any flotilla of cancer cells would be pretty apparent through the skin as it is so incredibly thin, so Ww have a new advantage, ironically. Same goes for the axillar--you can feel everything down to your ribs now.

3: like you acknowledged, your labs were normal early on in spite of having cancer...they're not so reliable for all, as much as we'd like to hang our hat on them.
It's not the ticket for you.
4: so, if it's not clear, you'll be getting your Foobs felt up regularly by class-A sleuths ( and you'll become one, too) on a regular basis. THIS IS THE GATEWAY for distant mets, so this is definitely where you want your forces lined up. Labs and body scans largely speak to distant mets and, ice come to learn, tx of a distant mets is the same whether it caught now or in 3 or six months when it would cause other symptoms....it's all systemic therapy at that point. So. Gateway. The name of the game is catching anything rightout of the gate. And you can be a part of that. Learn the topography -it will change a lot this year- of your chest, ask loads of questions and request ultrasounds when concerned. Your rads onco and surgeon are your new BFF's at this stage. Use them.

((Hug))

I also had triple negative. After I was diagnosed I researched signs of breast cancer and realized I had 2 symptoms that I completely ignored. Headaches and fatigue. I just figured work was getting to me. So now when I get a headache I journal it down and rate it on a scale. I told my onc my concern and she told me to keep monitoring it & give her a call if they continued. She also said that for any reason I had concerns that she would allow me to do a MRI. So perhaps if it makes you feel more comfortable ask the onc to do a scan for your piece of mind.

Most of my tests are ordered from my medical oncologist and surgeon.I am on Letrozole and see ONC for checkups: first after 4mons of Letrozole, then it was supposed to be every six months. He ordered a bone dexa scan as a baseline then I am supposed to have it every 2 years.

My bc surgeon wants a mammo and sono every 6 mons but I needed it sooner cause I found cysts. He also wants an MRI every year. Took it a month prior to the 1 year anniversary of the surgery and it showed nodules on thyroid and lungs which of course led to more tests. That is why I wound up with a CT, PET and PET/CT scans inside of a 4 week period.

My primary wants an echo every year.

Hope this helps.
Cindy

@A MyBCTeam Member

I wish you the best at the next appointment and try to go with someone. You will be more confident to voice your opinion. Do not just listen and agree. You must be your own advocate.

My doc always asks are there any questions?! Then I bombard him with them. I also take notes. Sometimes white coat syndrome is too apparent and I let my son take over with the questions.

Remember to start your list asap so that you won't freeze up and be overwhelmed. Hugs

Mentioned Users

A MyBCTea...

You can always find an onc that will comply with what you what if yours doesn't. But in most cases now the follow up is every 4 months for a year, every six months for the next few years and then yearly. Also depends if you are on any hormone blockers but since you are triple neg l would think that's not an issue. The blood test for markers can be highly unreliable and cause a lot of extra stress. Even MRI can light up an area that had trauma and it would look like a tumor. So I was told the best bet is to be very diligent about know your body. Do self exams, look for changes, if you have weird pain or symptoms that lasts more than two weeks go see your doc. I was super freaked at the beginning and wanted more tests that could tell me yes or no if it was back. You have this need to know and have a sense of security. But that eases after awhile and you don't want all the tests and doc appts. And you just want I get back to a somewhat normal life without the constant reminders. I had hormone positive BC and everyone used to think for all cancers if you get to 5 years you can take a deep breath. But a couple years ago the studies showed that hormonal cancer tend to come back many years later up to decades later and don't usually come back in the first 5 years unless they didn't get it all the first go round. So then my finish line was moved. At that point i just said fuck it. What will happen will happen and I don't think about it much anymore. I also rarely make my appts on there scheduled time frame. I was like that at the beginning to though. I haven't seen my onc in over a year. Eventually I have to see her and discuss the tamoxifen time line as I hit 5 years. But I think it's natural at the beginning to want as much prevention and diagnosing tools as possible.