New to this and lost

Calmspirit

It is all outpatient here. Has been for years with a lot of surgeries. When I had my gallbladder out it turned into a lengthy thing (surgeon dumped it in my body so lots of clean up) and I was sent home as soon as I was awake..

As the surgery gets closer I find I am thinking more.. I do not want to do radiation but don't know if I should just pass.. the radiology oncologist assures me it's safe etc.

I have no cancer in my family, aside from a sister who is going through something currently.

My best guess is that 7 years ago I was diagnosed with graves disease, instead of telling me it was a self limiting disease they said I had to have RAI. Since that time I have seen many people who had RAI go to develop cancer. While I know radiation is not the same as Radioactive stuff I still don't like it.. nor do I like taking any sort of medication. Including hormones.

If I had been given the option of mastectomy with no radiation or lymphectomy with it I'm not sure what I would have done...

I just want it over with as it can make me tearful to think about it..

I'm not sure how I will do afterwards and that also is added stress....

Thanks for letting me vent

CS

RocDocVic

https://csn.cancer.org/discussion/comment/1710311#Comment_1710311

I think it all comes down to the surgeon who must insist that it's at least an overnight stay. Let them deal with the insurance issue.

In my case I have no one to pick me up nor stay with me so that puts me at medical risk. I was told I would be kept overnight, but caveat is you must be an admitted patient for Medicare and supplemental insurance. Not just for observation.

Calmspirit

Monday morning while it's still dark I will head for hospital where they will put a wire in and inject me with some type of radioactive stuff.

Then I will drive to the surgery place and hopefully peacefully go to sleep and wake later to find its over and done.

Not sure which part I'm most apprehensive about, the wire, radioactive, surgery or anesthesia.

One more thing to get through

CS

LovesPrimes

CalmSpirit, you’re right. This is one more thing to get through but you will get through it!!! You are strong and you’re more powerful than you realize.

I’m praying for you and I’ll be thinking of you, waiting for an update once you’re able.

Calmspirit

Thanks.. I'm starting to clock watch..14 hours to go..

I am strong.. but I am tired... of all of it....

Calmspirit

That's over with.. it was tough..

Lot of tingling in my left hand..( side if surgery) 02 levels finally returning to normal..

LovesPrimes

So glad that part is over for you. I assume now begins the wait got pathology to come back?

Calmspirit

Yes, it should be here today, tomorrow or Friday..

This is tough

Calmspirit

I won't even pretend to understand what it means.. surgeon called and said results are in and she got it all.. there was a spot in the margin but very small (she scraped my chest wall and it was clear..and 1 of 4 nodes she took showed a seed or worm or something ( I'm waiting for the printed report)

So bottom line was I need no more surgery, but need radiation and hormones and possibly chemo.. the non surgical team will decide that soon..

She was also very apologetic with the treatment of the same day surgery place.. ( I told her I would either metabolize drugs very fast or very slow.. they sent me home drugged with my 02 levels falling into 50-70s.( they knew my 02 levelswere off as i had set off alarms ). I ended up in ER with 02 88.. then 79.. after walking in..they started oxygen immediately..I was confused and very white..... they ran a bunch of tests and said yup, it's the anesthesia... sent me I home on oxygen .. finally today it has cleared, and 02 levels have normalized)

Good thing is I needed no pain meds....

LovesPrimes

Oh dear! That sounds so scary. It really is so frustrating that insurance almost requires these surgeries to be outpatient. So risky!!!

I'm glad that your surgeon feels she got it all. I know the treatment still to come sucks but you've gotten a major step out of the way.

RocDocVic

https://csn.cancer.org/discussion/comment/1710550#Comment_1710550

So sorry you had to go thru this. I would never have allowed myself to be discharged with low O2 levels. I would have insisted on more monitoring or admittance to the hospital. The doctor could have pre-authorized this if needed. Anyways, lessons learned for others.

Glad they got it all. Hope it's only minor seeds in the lymph nodes, and radiation and chemo can address it. Hopefully no lymph node surgery needed.

Take good care of yourself and give yourself time to heal.

Calmspirit

I'm hoping this was the hardest part. Since I've never had any of the rest of treatment I don't really know but am hoping.

My 02 crashed again last night so not quite where I need to be..

It's tough but I'm getting there. I wonder how long this will take to heal. I'm having tearful moments. Frankly I haven't been able to look at my breast yet, I saw part of it from the top and it was too much..

Are you close to your surgery date?

When your surgery over do you know if you will have radiation or not?

LovesPrimes

My surgery was pretty much all-day on a Thursday and I didn't "look" until Saturday night. It was traumatic and I wept hysterically for a good while. But it is an important step in the healing process. You go at your own pace; don't look until you're ready (or as ready as someone can be for that).

If I had chosen lumpectomy, I would have needed 4-6 weeks of radiation. I was told choosing bilateral mastectomy didn't necessarily mean I wouldn't need radiation, but could. I ended up choosing the mastectomy and the surgeon had positive margins and took a few lymph nodes that were all clear. So no radiation for me. I went on to the next step, anti-cancer meds, 4 weeks after the surgery.

Calmspirit

Well, that made me cry, just knowing others have gone through this.. she took roughly a third of my breadt but said she basically pulled in what was left to try to fill it in.. I looked down the top of the binder and saw a "dent" that surprising to me made me cry like a baby. I have to shower today so will likely look/ feel it.. I'm not looking forward to it.

Am I correct in thinking you are having surgery soon.. to have replacement breasts put in ( I'm sure there's a better phrase for it, )?

I just got off the phone with a nurse telling me they are sending the tumor or some part of it to exact science company in California and their results will decide if I need chemo before radiation.. so more hurry up and wait.

Thanks for listening

cs

Calmspirit

@Rocdocvic missed your message till I saw the email. I was so out of it when they sent me out there was no thought to staying..

My thoughts literally felt like sheets of paper I was fighting to arrange. Was very confused. I do know when the monitor was flashing a red band across the top and the alarm going off the girls answer was to remove the sensor from my finger and say I needed to go.

And yes ,very minor seed in 1 out of 4 modes she took and no need for more surgery. I will know in 2 weeks about chemo, otherwise just radiation and hormones.

Thanks for listening

Cs

LovesPrimes

Sounds like Oncotype is what they're sending to California for. That will boil pathology down to a number that represents the possibility of recurrence and you and your oncologist will determine if the benefits of chemo outweigh the risks.

Yes, my surgery is coming fast now. It will be three days before Christmas and I will stay in the hospital for 3-5 days before coming home. I'm scared, anxious, sometimes panicked. Mostly I just want it behind me. My husband and I are working on our will/trust. We should have done this a long time ago. It's our own &*%$ fault that we're doing it when it coincides with cancer, surgery, etc., but it has me feeling extra emotional/gloomy.

Calmspirit

You are correct it is the Oncotype. I'm hoping it will be good with no chemo. The one little lymph node worries me...

Its an odd thing to say but yay that they will have you in hospital for a few days to hopefully take care of you. Sounds like it will be a wonderful Christmas gift to have it over.

I fully understand the emotions and just wanting it behind you. We all know it will pass the waiting is rough.

I can also understand the gloominess of doing the wills during this.. We did our trust and wills back in 04 before taking a trip and they need an update, so many things have changed... Before surgery I found myself wanting to get in to my attorney to update things and not getting it done which left me with feeling I need to change things but I'm not quite sure to what and it was just too much to think about.. Wishing you peace for the coming days of waiting

CS

Calmspirit

I'm suddenly feeling quite sad over this.

I know I was caught in the whirlwind that comes with a surprise diagnosis. It has now been a month since I received a call telling me I had cancer..

I went from a routine mammogram to a small suspicious spot that was likely nothing .. to having an ultrasound that I knew 100% would show nothing.. to an immediate biopsy that I again knew would show nothing.. even the radiologist doing the US said he was pretty confident it was nothing as for the most part it disintegrated when he punctured it so he thought it was likely a cyst except the rear part could be something...

I was so wrong....he was wrong..

After the phone calls were appointments.. the failed MRI, assignments of doctors, meeting them, going to surgery office and meeting the 5 team members there, going to the cancer Institute and meeting enough people we began writing names with little remarks of who they were...sitting up sitters, making sure everything was coordinated...

Arranging things so I could make the surgery appointment.. having the surgery, getting over the after math, seeing my chest, learning what a compression vest is, dealing with oxygen rental place where the people are the rudest, and now finally..

Slowing down enough to realize,.. I have cancer.

Something going on inside my body that could kill me.. something I need a treatment for, all the treatments sound so scary..

I don't do drugs well, any drugs... last time I was in hospital my team told me if they had 100 people like me come in 99 of them would have been fixed.. then there was me, the most drug resistant person they'd had...

I'm also very drug sensitive, go figure..

Radiation to left breast.. what will protect my heart and lungs..I know it's better than it use to be..but...

Chemo..sure do hope they don't recommend it..

So I'm waiting again.. then I'm not sure what... I don't think my brain has accepted this yet..

I've began telling people I have cancer in an attempt to get it in my head.

I just don't know..

Is there an acceptance thing I am missing??

LovesPrimes

No, Calmspirit, this experience is traumatic and everyone has their own grief process. I'm so sorry for what you are going through. You are seen. You are loved. You are lifted in prayer. We both need to believe that there is life on the other side.

LifeInBloom100

I echo LovesPrimes - Everything you're experiencing seems 100% normal to me, and frankly, you could be describing my own roller coaster of thoughts. I too send you a virtual hug.