Got all test results--surgery is scheduled

astyanax66 · February 2018

Hi, all,

Well, after 3 mammograms, 2 ultrasounds, and a core needle biopsy...here we are. I have IDC, stage 1, a tumor that is about 7 mm in diameter. The local hospital where I've gotten my mammograms missed it *both* times on the screening mammo and the diagnostic mammo, and the first ultrasound. (I mean, should I say something?) I listened to my gut and got in right away at the state medical school/teaching hospital/breast specialty center.--something just felt "off" to me. They have been marvelous. They did another spot-compression mammo and ultrasound. And they found the tumor. I am very, very thankful and wow, do I ever trust my own judgment now. Hereafter--breast specialty clinic/center for me!

The tumor is estrogen and progesterone receptor positive, but HER2 negative. The surgeon is doing a lumpectomy and sentinel node biopsy. I go in the day before for some magical radioactive dye (I need to read up on this--new to me--what does it involve?) and the morning of surgery for the wire (not unlike when I had DCIS in 2004 on the right breast--not too bad). Then, off to surgery, with the expectations of going home later that same day.

I also had a genetic test (26 markers--I already tested negative for BRCA 1/2). That may give us some more information to plan treatment.

How do I feel? Well, scared, though my odds of complete recovery are good. Dread--this is my 5th surgery in 12 years, and dang--I'm sort of sick of hospitals. Fear--of pain afterwards, mostly, and the fact that with the previous lumpectomy, the incision was small and no lymph nodes were taken, so I know this may be more painful. I also have horrible PONV (post-operative nausea and vomiting), so I want people to listen to me and take it seriously (I think they will).

Mostly--mentally and physically exhausted. It's just over an hour drive to the hospital, each way. I do worry how that will affect radiation treatments, but for now--focusing on the surgery and getting through that well. My workplace can be "intense," so I'll have to have that round of conversations tomorrow.

How are you guys? I hope you have an evening of peace and comfort.

EastcoastTS · February 2018

Sorry you're finding yourself here (again). But you know the drill, it seems, and have it under control.

Also sorry you've had your fair share of surgeries in the past. Just forcefully tell them to give you the anti-nausea meds, that you've had a bad reaction. I think they'll take you seriously with your track record of surgeries.

Good luck and hang in there. I hope you find peace and comfort along this journey, too. {hugs}

SpecialK · February 2018

Glad you have a plan! Unfortunately, it is not uncommon for mammography to miss a cancerous mass, particularly a small one, and if breast density is at all an issue. My breast cancer was very palpable in a B cup breast, 2.6cm and it was totally missed. I’m glad you found a center you feel good about, that is important.For your PONV, ask for a scopolamine patch to apply the night before, and thoroughly discuss your previous nausea with the anesthesiologist, it would be helpful if you are aware which meds do not work for you so you can tell them. There are several different methods for the dye/tracer for identification of lymph nodes. Essentially, it is an injection, or several, done night before or day of, that helps the surgeon locate the lymph node(s) closest to the breast most likely to contain cancer if it has spread to that area. Like with many aspects of surgery and recovery, some have found this painful, others have not. For me personally, it was a stinging sensation that was short-lived, just part of the process. Some docs allow a topical anesthetic so that is something to ask about. Search sentinel lymph node injection on this site and you will see a variety of experiences. For rads with a long commute, it might be worth asking about the shorter course Canadian Protocol, 15 day approach. Good luck, wishing you the best!

astyanax66 · February 2018

Thanks, EastCoastTS and SpecialK! Alas, the scopolamine patch was a no-go for me. I was *really* hoping it would work--tried it last time I had surgery, and ended up with the worst nausea ever. I know, however, it works wonders for many folks. (I felt like a jilted lover because I'd heard so many good results from it!) I am the Zofran queen, though--that is my lifesaver, and the oncologist already called in a 30-pill bottle. Whew! Relief.

SpecialK: They missed 2.6 cm? My goodness. Were you upset with the facility? I guess I am a bit because they sort of shrugged off my concerns, and my PCP is the one who concurred with me getting a second opinion, thankfully. I do dread the dye injections--I handled the numbing and core needle biopsy just fine, but the idea of the needle into the aureole makes me shudder a bit. (I had an unsedated colonoscopy last month at my request, and it was nothing, but this gives me the creeps). Thank you so much for the info about the Canadian protocol--that would work very well for me, I think. I'll bring it up with the team.

Have good day!

SpecialK · February 2018

i have had an abundance of surgery and never experienced PONV until a couple of years ago. The scopolamine patch is an addition to other anti-nausea meds and seems to help. I'm so happy that Zofran works for you - it did not for me at all, and I got the horrible headache from it that some people do. I had an anesthesiologist give it to me anyway, even after I told him it wouldn't work, so my plastic surgeon and paramedic son both advised to list it as something I'm allergic to so it won't be given - love them! As far as the mammogram missing the lump, the policy where my imaging was done is to follow up with another imaging method if a palpable lump does not show, so I did have an immediate ultrasound. The lump was clearly seen on US, and the radiologist felt that a biopsy was warranted even though he was not 100% certain that this was a tumor. I had a long history of cysts, and complex cysts. Had this lump not been palpable, I hate to think what would have happened. I was imaged prior to 3D mammo and had extremely dense breast tissue so standard mammography wasn't the best imaging tool for me, but knowing this also informed my surgical decision to opt for bi-lateral mastectomy. I had extensive ADH and ALH in the non-cancer breast, and nose positive, triple positive IDC and DCIS with lobular involvement in the cancer breast. I had bi-lateral SNB, 4 injections per side at the quarters of the areolas, both dye and tracer. I did not use a topical anesthetic, and while it stung a bit, didn't find it to have residual pain. Ask about the topical - many feel that helps a lot.

downdog · February 2018

I am not aware of anyone I know with severe PONV finding the scolopamine patch the least bit helpful, but like side effects experienced to drugs, everyone is different. I have the anaesthesiologist add zofran to my IV and I don't need to take any zofran pills post-operatively. I've done this for 5 surgeries and it has always worked for me. Ask for this and then have the pills on hand, just in case you need them. Some hospitals use a technique of a single injection for the radioactive tracer and others use 4 around the perimeter of the areola. Mine used a single injection, and like specialk, I experienced a short lived sting. I didn't like the feeling of the tracer spreading, but again, some unpleasantness that is part of the process. You will read reports on here running the gamut from no big deal through to excruciating. Because of its half life, you will require a larger volume if you receive it the afternoon prior to your surgery, rather than the same day of surgery, so if there's an option, choose day of surgery, which can depend on the time of day your surgery is scheduled. Some breast surgeons use blue dye during surgery as well to locate the sentinel node(s) and some only use blue dye, which is likely at smaller community hospitals without a large nuclear department. I only received the radioactive tracer about 90 mins before my surgery.

Best wishes

astyanax66 · February 2018

Special K--that's just wrong that you told them *not* to give you Zofran, and they did anyway. UGH. Good idea on listing it as an allergy--that's what I have to do with Versed (it seems very popular). I've had it 3 times, and twice, I stopped breathing (to be fair, I think one dose was way too much, but still). The colonoscopy nurse said that was a good idea to list it as such, so same with you and the Zofran, I will definitely ask about the topical, too.

downdog--My dental hygienist said it was really wonderful for her, and when I had my da Vinci ovary removal (which was almost painless and pretty amazing), they *swore* it was the greatest thing ever. Not for me. Yes, we're all different--but it made my eyes twitch and made me really light sensitive, so kind of scary. My surgeon said absolutely yes on the pre-op IV Zofran, too...glad they are cognizant of the PONV. Thank you for describing the radioactive injections--I don't know if it's 1 or 4. I do know the dye will be done in surgery. Good to know also about the larger amount and "feeling" of it spreading. I told DH I want serious TLC after that (which probably means cuddling up with our dogs and watching Jane Austen).

Veeder14 · February 2018

During my last two surgeries, I specifically said that Zofran doesn't help my nausea. It was given to me anyways. The resident doctor ordered it before I went in to surgery and it was given in the recovery room despite me saying that it doesn't work, and them having to order phenergen after (which delayed getting it). This past surgery, I again said Zofran doesn't work and I found out later that it was given to me during the surgery. I was given phenergen in the recovery room. I will take care of this when I go for my follow up appointment as I'm pretty mad about this. Having to get both medications just increases the chances of side effects.

astyanax66 · February 2018

I'm like a bull terrier. Like I said earlier (somewhere), this is my 5th surgery in 14 years. Two of them were pretty awful (gall bladder and total hysterectomy) with longer recoveries due to mistakes made (my liver was torn during the former, and there was no pain management on the latter except for Tylenol and Ibuprofen--for a 6" abdominal incision-owwww). I also had a real stinker of a post-op nurse after the da Vinci ovary removal (everything else went great) when I had such bad PONV. But overall, I've had good caregivers.

I am a control freak. I carry around this binder with all pertinent test results, a Word document (table) with current medications, allergies, and past surgeries (yep, I get the surgical notes). I file it at every appointment when I meet someone new. I have DH watching like a hawk when medications are given pre-op. That said, I'm cordial and polite, I always thank people who do a good job, and I make a point of writing a positive review or calling quality control and stating when someone has gone above and beyond. (I'm a professor; I know the value of getting a simple thanks can really make my day--to know I've made a difference for someone).

But I also speak up and ask questions. The quickest way to get me mad as a wet hen is to patronize me ("Oh, it's just some woozy-doozy medicine, sweetie! Don't worry your pretty little head about it!") instead of saying, "Dr. Smith said you'd requested something for pain? This is so and so. It may cause (side effect), but it will help. Is this okay?" I know some people use "hon" or "ma'am" in a friendly way--that's fine. It's all about how it's said.

So, I feel pretty good about all the folks I've met at the cancer center (all encompassing--surgery, genetics, radiology, etc.)--compassionate and professional. STILL dreading the dye thing, but you guys have helped me feel better about it. A bit of minor discomfort, but for a good reason. I can do it.

EastcoastTS · February 2018

astyanax66:

My take on the dye/nuclear injections. I had mine a couple of days before surgery (MD Anderson) I guess because my surgery was on Monday am, bright and early. Anyhoo--someone on this list told me to ask for EMLA cream (topical numbing cream, prescrip). My doctor ordered, although I'm sure thought I didn't need but I made them do it -- and doctors discount pain in any case to a certain extent, especially surgeons! -- and the suggestion was: cover said breast in EMLA, cover then with SaranWrap (no lie) and go to appt. Do this about an hour before. So it has time to work. I also took an Ativan. Sorry I was nervous.

I felt NOTHING. Nothing. So -- maybe some combo of those things worked.

The facility did tell me that they'll do EMLA if a patient calls and asks beforehand because you have to come in early for application.

So ask your facility and/or ask your doctor for EMLA. It's can't hurt to do this if you're nervous.

astyanax66 · February 2018

Wow, that is an amazing idea with the Saran Wrap. I think you should patent that!! I did get an RX for Xanax to take just before the procedure--they were happy to help with that. I'll also ask about the EMLA cream. Thank you!

EastcoastTS · February 2018

It actually really worked well. The Saran Wrap stayed and kept the lotion off my clothing (which didn't really matter if it spread).

This site is full of great ideas and tips for our journey.

Hugs to you!

Got all test results--surgery is scheduled

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