Apparently I Am "Just Diagnosed." :(
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LW422,
I'm sorry to hear about the IBC diagnosis, but you're in the right place (and I promise you that you'll learn your way around). Regarding the port, the man who does most all of them at MD Anderson (Dr. Ervin Brown) holds the world record for number of port placements. He's a hoot, but does a great job.
You've been diagnosed so quickly--that's good news. Of all types of breast cancer, time is really of the essence with IBC, and you've had a whirlwind diagnosis. You're in great hands.
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Thanks, ElaineTherese. I was wondering why my MO scheduled an EKG for next week; I guess that heart thing is the reason. He said I'll have 12 weeks of Taxol (once/wk) and then AC once every 3 weeks for 4 times... so a total of 24 weeks. Sounds like my dosage is similar to yours. I hope I can tolerate both of those with few SEs.
Ugh, diarrhea. I have a "nervous stomach" so ever since I started down this road I have been the Queen of Bathroom Emergencies. I hope that will calm down soon.
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Hiya, Beesy. Yep, my worst fears have been confirmed but I'm strangely calm with it so far. The oncology team were all very positive, particularly about the relatively small area of "IBC" on my breast that hasn't really changed much in 4 weeks. I look forward to meeting Dr. Brown and getting the show on the road!!
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Hey Jana. I'll take those prayers and those hugs, thanks!! I'll ask the doc about the glutamine powder. I will be scouring the forum for chemo tips now that I know what I'll be getting. I have a busy 2 weeks ahead and I'll be glad to have this part in my rearview mirror.
The surgical oncologist wasn't very enthusiastic about my wanting the double mastectomy. She is saying that they prefer to give the best "chance of healing quickly" to the cancerous breast then take the other one off later. I don't quite understand the logic so I will be pushing for a better answer. I'd just rather not have to go back into surgery a second time with all the expense and healing time... again. I'm sure I'll have to go with their recommendation but I sure don't want to.
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LW
Maybe faster recovery means faster time getting on to chemo and prevention?
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Ask your oncologist about taking loratidine (Claritin) for a few days before and after your Neulasta shot. It seriously prevents the bone pain that's so common. Some oncologists know about it, others don't.
I took glutamine and B-complex vitamins to help prevent neuropathy and although I have some in my feet, it's not severe. Again, ask your oncologist.
Some people swear by icing their hands and feet, and sipping on icy drinks, during chemo. It's supposed to help prevent neuropathy and mouth sores.
Exercise. Every day. Even if you just feel like lying around and watching re-runs of Downton Abbey, get out and walk, ride your bike, stroll, meander, whatever. It truly makes a difference.
Check out "Cleaning for a Reason." This organization provides house cleaning for patients going through chemo. It's not available everywhere but if you're in the area, it's a nice experience to not clean your own house.
Do you want a wig, caps, scarves, commando? Think about how you'd like to manage being bald. People typically lose their hair 2 weeks after the first chemo infusion, and it's demoralizing to have hair falling out and lying around everywhere. You can quietly get your head shaved at home or make a party of it.
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Hey Astrid and Wrenn. The standard treatment for IBC starts with chemo, then surgery, then radiation. So I assume the surgeon thinks one mastectomy will heal faster than a double, and I'm not sure why. She said the area of "IBC" on my breast is small so there won't be any issue with needing a skin graft or anything. I'm sure they want to get the radiation started ASAP after the surgery heals to clean up any random cancer cells.
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SBElizabeth--my MO didn't mention Neulasta; does everyone get that? I did ask about icing my hands and feet and he said there was no "science" to back that up. (sheesh) So I'm thinking he and I might knock heads at some point but we'll see. Thanks for all the tips; I need all the info I can gather at this point.
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Wrenn--IBC is one of the most aggressive and fastest growing types of BC, so I guess they want to kill as much of it as possible (and shrink the tumor if there is one) before surgery.
Thanks for the tips; y'all are giving me so many great suggestions. I have so much to learn.
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LW - Chiming in to emphasize what some others have said.
Yup - you're probably right about the IBC threads. I'll miss you if you move.
Heart test - get an echocardiogram. Acriamycin can damage the heart. I had an Echo every month - 6 weeks during both chemos and also during the year for Herceptin.
If you're going to start chemo the day after your port is installed, tell them to leave the "dangles". That way the infusion center won't have to push for access shortly after port installation. And I assume it will be a "power port". That way they an use for everything - chemo, blood draws, contrast for CT, etc. And yes I liked the PET best of all the exams. But you have to be absolutely still for 40 minutes before the test starts. That's the only time I took 5 mg Xanax because I couldn't sit still.
Neulasta will likely be given depending on your blood work - which you'll have before every infusion. I had it 24 hours after every chemo. And yes - Claritin for some reason helps with bone pain. Not the "D", just the original. You can take the day or two before chemo and several days after.
I can't remember if I posted the chemo link, but I'll send it again.
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LW - here are the two links.
Getting through chemo
https://community.breastcancer.org/forum/69/topics...
Getting ready for surgery
https://community.breastcancer.org/forum/91/topics...0 -
LW - please post the link here when you decide where to migrate.
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Hi MinusTwo. Thanks for all the help. I don't know why I said "EKG"; I'm have an echocardiogram. I'm stumbling over my own words this week. My MO didn't mention Neulasta; I guess he's saving a few surprises for our next meeting on Feb. 2.
I'm not sure when the port will be installed. I'm seeing appointments pop up like weeds in My Chart. I'm not afraid of the actual PET test; I'm afraid of what it could find. Eeek, I can't deal with any more bad news.
Thanks for the chemo links. I guess I'll buy a few things suggested "just in case." I ordered a large tote bag from Land's End to drag all my necessities to treatment. It's a whole new world!!
I'm not sure where I'll land on the forum. I'll just keep posting here till I have been "staged," and I suppose after the body scans I will know if I'm 3 or 4. I'll probably hang in the chemo threads soon to commiserate since I assume I'll be starting in early February.0 -
PET tracks 'sugar', so be sure you check if they'll allow you to eat the night before. I wasn't even allowed to read while the contract 'set', because movement means energy is being burned when you turn the pages of a book. PET tracks those cells sparking. I really like the PET, but many doc's don't use them because apparently there can be false positives.
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LW,
You're having chemo first and hopefully the chemo will have taken care of the cancer before you even have surgery--that's the goal of neo-adjuvant chemo, and you're getting going in almost record time. So many women are treated with antibiotics for "infection" before a doctor finally realizes it's not an infection. Your surgeon will most certainly allow you to have a bilateral mastectomy, but they always push back. That was my experience, also, but I knew what I wanted and they agreed to my request. If it's what you want, insist. I did not have reconstruction and was able to start radiation within two weeks. My tumor was hormone negative but HER2+, and grew very quickly right after the biopsy, even invading the nipple, according to an MRI. In that sense, it had gotten into the skin, not making it IBC but making it more like it than if it hadn't gotten to the skin. That's why even though I had a BMX, had a pathologic complete response (no live cancer cells in the removed breast or node), I still had to do radiation.
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MinusTwo--my instructions for the PET say this:
- You must be fasting for at least 6 hours prior to appointment time. Nothing but plain unflavored, uncarbonated water is allowed. No coffee, tea, or soda.
- No gum, candy, or mints, cough drops, or gummy vitamins within 6 hours of the study.
- You make take your regularly scheduled medications except for diabetic medications or anything that may contain sugar. No liquid, chewable, or medicine that is made to dissolve in the mouth within 6 hours of the study.
Also says to eat protein and vegetables, avoid carbs the night before.
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AH ha - yes carbs would be fast burning too. Trust MDA to have already covered all the bases!!!
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Beesy--I still can't really put my mind around the determination of "IBC" since it is a clinical diagnosis based upon the oncologist's interpretation of symptoms. The IBC team didn't even consider the skin punch biopsy result as it was not mentioned and is still not in my lab results. (It was my understanding that a skin punch biopsy was the only true indicator for IBC...but apparently I was wrong, haha.) I believe my "Ki-67" high positive result indicating a fast growing cancer played a large part in the diagnosis.
Of course, I'm a total dolt about all of this and easily confused while being bombarded with information.
At any rate, I'm hopeful that getting started with chemo relatively quickly will work to my advantage. I suppose I will have more serious discussion with the breast surgeon about the bilateral mastectomy as the chemo winds down.
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MinusTwo--unfortunately for me, the Coffee Hound, my PET is scheduled for 11 a.m. which means the test will probably occur at 1 p.m. and I won't have had any coffee all day. Ugh.
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Hi LW,
I'm so sorry to hear that you were diagnosed with IBC, but glad you are at MD Anderson.
The PET scan was pretty easy for me, except I swear I had to pee really bad at some point while in the machine. Also your prep instructions sound the same as mine. I actually stopped drinking coffee for my entire chemo and surgery at that point. Chemo and coffee did not go well for me.
None of the Drs. I've seen - my MO, my RO, as well as an IBC specialist MO and RO disagreed with my SOs recommendation to have a unilateral mastectomy. I was too exhausted to dig into details, but I think they really don't want to risk delaying radiation for patients with IBC. The bigger the surgery, the higher likelihood of complications. I go back and forth on the idea of removing #2 at some point. On the bright side - still having #2 means I will continue to get regular scans every six months.
Good luck with everything!
Blue
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Hi Blue!
I notice you had Dcis In right breast at same time? Lumpectomy for that and node removal tooo right side? Was that surgery at the same time?
You have really been through the ringer!
How are you going with the targeted therapies? Any side effects?
And are you manging the left right balance of breast and mx side ok? Back issues? Any LE for you?
Sending love and hope for a long, long cancer free time.
Astrid.🌺🙏
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Hi LW,
How are you going?
I figure a 5:45 am coffee (no sugar
) would fit in nicely to your schedule!You will know what your body is up to ...good bad and ugly after these tests and that in itself can be therapeutic.
Then you just break it down into manageable bites. A new job of sorts.
I'm so glad you caught this early. And have landed in a centre of excellence for cancer care.
You can do this, and we are all right here with you. Being global means there is usually someone up and about when you are.
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Hi again, Blue! Thanks so much; I was disappointed to be diagnosed IBC but honestly not surprised. I just got home from the PET scan about an hour ago. It wasn't nearly as stressful as the MRI, but the sitting for an hour after the injection was kind of a bummer. Now I'm stressing about the results... I know if there is any spot anywhere else I'm an automatic Stage 4. Such a lot to take in as I feel bombarded and like a "stranger in a strange land."
I will keep pushing for the double mastectomy, especially if I have good response to chemo. I just don't want more surgical bills, another wound to heal, etc. if I can get around it. Of course my main objective is to LIVE, so I'll go along with the doctors but I'll be sulky.
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Hello Astrid. You are a ray of sunshine in this gloomy Texas day my dear. There is one thing you must realize about me... I will never be awake at 5 a.m. unless I just haven't gone to bed yet.
I slept until 9 so drank some water and got on my way. I'm so grateful for all my new BC friends, though it truly blows that we all ended up here. I'm just filled with gratitude that I have found you all.
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Well I was way behind your schedule anyway LW. Noted....partygirl. (heheh)
I think you should read my posts with the southern hemisphere accent they deserve.
Think, 'a dingo took my baby', but much nicer
I am now reading your posts with a lovely texan accent.So glad your PET scan is over. I always think, hmmm, I wonder if it will be a poodle or a pony today. Over here, we lie down and get to watch a video. Of course you never get to see the end which is annoying!! "Do you mind waiting...I HAVE to know what happens!!"
I mean camon people!
Coffeee!!!!
Yes
Anxious wait ahead. Of course it is. Deep breath.
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yes. Sulky is good.
Works for me.
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LW - Glad your PET is done. Really, don't panic about the PET results. There are often ambiguous findings, which is why some docs will never order that test at all. Finding something does NOT automatically mean cancer - or for that matter Stage 4. Nothing's automatic about this damn disease.
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Hi LW,
Yes I did have DCIS in my right, and IBC in my left, but we did not know it was DCIS going into surgery, just abnormal cells (I can look up the exact terminology, don't remember it off the top of my head thanks to chemo brain...). I had a left mastectomy and lymph node dissection. Right side was only lumpectomy, no lymph nodes removed there. All my margins were clear.
I did have targeted therapy too - after surgery - one year of herceptin/perjetta. For part of that time I had Xeloda. Yes, I did have side effects, but honestly, you really just get through it all. It is not fun, but it is tolerable.
My medical team tends to not get into the nitty gritty details until it is time to deal with them. In other words, we didn't get into too much details of side effects and what to expect for treatment weeks or months off. It is much easier that way to take each treatment as it comes. That being said, I did have a general idea of what to expect. Once we were closer to treatment everything was covered in depth. My MO is amazing.
I highly recommend trying to focus on one treatment at a time Don't think about what is coming months from now, just what you have to do each day, or each week. It is manageable, and not as overwhelming that way. Honestly, the hardest part is psychological.
I'm also glad you are scheduled for the port - I loved having mine.
Hoping the best for the PET scan results. For me it was such a whirlwind and shock that I wasn't really thinking about them either. I think my mammogram/ultrasound was on a Thursday and the PET scan maybe the following Tuesday.
Hopefully the weather will cooperate and you can get outside this weekend? Taking walks etc is so important! Maybe you can do some shopping for head coverings or wigs, whatever you decide you want to do. Have fun with those. (I didn't really mind losing my hair... it is just hair, it grows back)
Take Care,
Blue
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Hi Blue,
That was me asking questions, not LW.
I thought there might be some reasurrance there if not having double mx.
Of course you are right in not looking too far ahead and getting overwhelmed.
So glad you got through all your tx without too much trouble.
Astrid.🌺
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Astrid, I'm certain you sound just like Crocodile Dundee, but in a higher pitch. Amirite???
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