Apparently I Am "Just Diagnosed." :(
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Thank you so much, Astrid. I'm sorry that this is happening to ALL of us. It's so helpful to have landed here where kindness and knowledge are so freely shared, and I'm grateful to each one of you for acknowledging me. I'm certain that belonging to such a supportive group will help me on this scary road I must travel.
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Hello Kimberly; how lucky you are to live in beautiful San Diego. I know that none of us wants to be here, but how fortunate for newbies like me that all of you are so kind and comforting. Your nurse is very wise; those "small bites" are much easier to handle for sure. For right now I feel strangely calm but I know that my emotions are going to be all over the place. Thank you for your response to me; I appreciate it more than you know.
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My advice to any newly diagnosed person is to deliberately set aside time for fun - doing outdoor things like hiking if the weather permits, getting your favorite carry-out or delivery and watching a silly movie, cranking up the music and dancing until you're pooped, going for scenic drives - whatever is possible depending on your weather and personal preferences. Do this as often as you can between appointments, surgery, and treatments. I did this and looking back at 2018, I remember the fun things much more than the dreary medical stuff.
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Thanks, Alice. I hope I'll get to that point, but right now I'm consumed with all the details, with fear and anxiety thrown in to the mix.
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Update: MRI scheduled for January 19.
Can anyone comment on the MRI process? I have had an MRI on my neck for disk problems so I know about the noise and the claustrophobia. Is the breast MRI painful in any way? They said it will take 2 hours!!! YIKES.
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my breast MRI was not painful but the MRI assisted biopsy on the breast subsequent to that was. Best wishes to you.
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Breast MRI will be done on your front, breasts go into two little holes (yes, its awkward!). Just be aware that there is a hard plate that your breastbone will rest against, and your arms will be overhead (like superwoman) for a while - some women have difficulty with their shoulders in that position or resting on that plate.. I had to arrive early as there was some prep to change, had a cannula inserted, getting situated on the table, etc. So while the imaging itself is like 15 to 20 minutes, there is a lot of messing around and they will probably be sterilizing the machine quite a bit before you are called in.
As your head is out of the machine and you are pointing at the floor its FAR less claustrophobic than a back series. I seem to recall I had headphones on as well to block the noise.
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Thanks, Abigail. There has been no mention of a biopsy; hopefully since I had the needle aspiration and core biopsy when they did the ultrasound that isn't necessary. I appreciate the good wishes.
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Thanks for that information, Sondra. I was a bit put off when I saw that the test was scheduled for 2 hours!! I told my husband there is no way I can stay in that position for that long!! I suppose I'll have to deal with it; just another unpleasant but necessary thing. I'm glad my head will be outside the machine, though I don't get claustrophobia. When I had a closed MRI for my neck disks I just closed my eyes and it was easy.
I had to look up "cannula." Haha, I'm totally ignorant of all the medical terms that I'm sure will become my second language soon. Is the dye stuff radioactive or just a dye?
I appreciate the response; you have been very helpful to me and I thank you.
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Just a dye - radioactive tracers are only injected for nuclear bone scans and are done via a needle, not a cannula.
The position for the MRI is almost like getting a massage done at a spa. Keep telling yourself you are at a spa and you will be fine!
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glad the MRI is scheduled pretty quickly! It’s not painful and not claustrophobic as you’re on your belly. The tech did warn me I may feel nauseous from the injection used (but that didn’t happen!) I did feel a bit dizzy at first and while moving from my position when it was over. She didn’t warn me of that beforehand, so I got a bit nervous. but She explained it was from the magnetic pull I think? So crazy.
My actual MRI took about 20 mins. Not sure why they said 2 hours, maybe paperwork and such??
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I thought the MRI was worse than the biopsy or surgery, but there was construction at the hospital and they were having to use a portable unit in a trailer. The technician seemed a little flustered - maybe they'd just started using the trailer unit - and I don't think I got positioned quite right on my sternum. Make sure they let you take your time getting as comfortable as possible, because once you're positioned, you can't move until it's over.
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Thanks for the MRI info, Sondra and Taralynn.
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I guess I need to get my boarding pass for the next bus to "Crazy Town." Next Tuesday is the MRI and Wednesday I am scheduled into the MDAnderson IBC Clinic for a consultation with the "IBC team."
I am so freaked out right now; I have to assume that my mammogram/ sonogram/biopsy results and physical examinations have them already convinced that I have IBC. I thought I'd need that skin punch thing as the ultimate diagnostic but apparently not. I hope I don't have a damn stroke from sheer anxiety.
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Thank you, Wrenn. I seriously need to stop googling and just let my doctors lead me through treatment. Everything I look up on the internet just stokes my "high anxiety" fire. Hard to believe that a month ago my biggest concern was whether my Amazon order was going to get delivered in time for Christmas. Life certainly has a way of jerking the rug out from under a person.
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LW, yes please stop googling!! I’m really the pot calling the kettle black here because I was a horrible googler. Now I want to kick myself from a few months ago.
Just keep reading my initial response to you. I had IDC with redness and swelling! No IBC! It’s possible! But Google will only lead you to all things IBC. But again, if it is IBC, your team is really on top of things and you’re in the best hands.
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Taralynn--I'm so glad that you don't have IBC, but I don't believe I'm as "lucky" (if any breast cancer victim can be called lucky.) MD Anderson has already assigned me to the IBC "team" even without the skin punch biopsy so that lets me know that they believe that is my diagnosis. I'll know for sure next Wednesday when I meet with them.
My breast is much more red and bruised looking today, I suppose because of the harsh diagnostic mammogram, sonogram, and 2 biopsies on Tuesday. (That was the worst and most painful mammo I have ever had.)
So I have stopped googling but I feel resigned to my fate. Once again, I appreciate everyone's help and support; this is a great place to be when faced with a common enemy.
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it’s definitely a very helpful community here, in all aspects of this journey we’ve been thrust into. Once you get some more answers and a plan in place, things get better, that was hard for me to believe at first but it’s true. Sending hugs
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Hi LW,
I'm so glad you are going to MD Anderson. I wouldn't jump to the conclusion it is IBC. I would wait to see what they say! The very very positive thing to remind yourself is that since it is an IBC clinic you are going to, you should be able to be confident they know what they are doing, and if you do have IBC, they know how to treat it.
I wouldn't worry about the MRI. I had so many during my treatment I lost count, and have had at least two since surgery and chemo, and will continue to get them. An MRI-guided core biopsy is another story (not fun).
Feel free to DM me if you have any questions. I know how crazy this time is for you, and when IBC gets thrown into the mix it is a whole other level of things to think about.
Blue
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Hello there, Blue, and thank you for your kind words. I know that everyone here has been where I am... anxious and fearful of what lies ahead. It's so nice to have a place to "let it all out" without judgement. I'm glad that I live close enough to MD Anderson that I can go there for treatment... I just wish I didn't have any reason to.
Honestly, since I was told I'd be meeting with the IBC team I haven't even thought about the MRI again. My brain won't let go of "IBC". Also the nurse I spoke with today said they will still schedule the skin punch biopsy since I kept asking about it. I guess I don't want to leave any stone unturned.
I see that you have the unfortunate IBC diagnosis; how has your treatment gone so far? I will take you up on that DM thing since I do have a lot of questions. (But I don't want to be a pest.) Seems that the IBC section of the forum doesn't have a lot of traffic which is too bad. I'd love to talk to a lot of people who've walked this scary path. Thank you again for your post; I truly appreciate it.
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Hi LW,
It is hard to answer the question of how my treatment has gone so far, since it has been a lot. I'm at one Dr. called the maintenance phase.
It is exactly 2 years from last Thursday when I had my life flipped upside down. I was told while sitting on the ultrasound table that they were sure I had cancer. My appointment was late in the day and the FNA clinic next door was already closed, other wise they would have walked me right over there for a biopsy. Unlike a lot of women who have lumps, I didn't go into that mammogram/ultrasound thinking I had cancer. I had found posts here and information online about IBC, but the descriptions didn't match. IBC typically doesn't have a lump... it proceeds within days if not hours... but my symptoms didn't match those descriptions. I was expecting them to say I had cysts, or something else benign. They sent me home with orders to come back first thing the next morning to get an FNA biopsy, and go to the same day breast clinic where they would start coordinating next-steps etc. I was in shock, and almost denial and completely unprepared to be told I had cancer.
After that appointment it became a lot of hurry up and wait. They rushed to get me in as fast as possible for an MRI and PET-scan over the next week so that for the following Friday they would have information to discuss my case prior to seeing patients in their same day breast cancer clinic where I had more biopsies, was scheduled for another MRI for my other breast, met the surgeon and medical students (one who commented on seeing pea d'orange) (more on that if you want to get into deeper details) and was given information on clinical studies etc. After that it was a bit of waiting for results from my biopsy before I finally saw my MO, and I remember she advocated for me to get started immediately. To this day I feel really lucky to have her as an MO.
I cannot state enough how lucky you are to be able to go to an IBC clinic. I really hope that you don't have it, but if you do you are at one of the best places to be treated.
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Hello again, Blue, and thanks so much for your post. I was going to DM you but I believe it will benefit other readers to know how we each came to our diagnosis, and the treatment we receive. I know as a newbie, I am seeking information from people who have been down this road before me and what the process was like for them. It is so kind of people to share their stories.
So you are still in treatment? I have a lot of questions about chemo but I suppose I won't know what will happen there until the doctors prescribe my treatment. I'm just wondering how long I will have to endure that particular procedure as I dread it the most.
I'm actually hoping to have a double mastectomy because I have already disowned my boobs since they are trying to kill me.
I don't ever want to see them again!! My IBC symptoms are not like the "classic" description, either. Just a pink "bruise" at the top of my breast, and some swelling of the breast. No heat, no noticeable peau de orange, etc. The doctor said my nipple is beginning to invert but I don't see it; it looks the same to me. Also my nipple is extremely sensitive so I wear a sport bra 24x7.
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I also started getting an inverted nipple, and I think it was more apparent to the Dr. than it was to me. I've also disowned my boobs, but the surgeon did not want to remove both, even though the second one had suspicious cells that turned out to be DCIS. I think their thinking was that it was better for me to have a speedy recovery so I could move on to radiation, and one is better than both... this is where I would have preferred to be at an IBC clinic where I know they focus on IBC.
Per the surgeon the pea d'orange the student saw was not classic pea d'orange, it didn't look anything like the really advanced pictures you see online. I did have pain, and itchiness, and if you were looking for it you could feel the thickened skin. My tumor and my breast changed a lot over treatment. Regarding your comment about sports bras - once they started messing with my breasts (both sides had biopsies) I pretty much wore sports bras all the time until after surgery. Now I can't stand a bra even for the remaining deformed one.
I am still in treatment, but not with anything harsh like what you will start with. Not everyone is still in treatment at this stage, it depends upon the hormone receptor status of your tumor for one thing, and how much you and your MO want to add on additional treatments to reduce risk of recurrence. Since I had IBC, I was told they will basically follow me up for life because of the risk of recurrence.
You will most likely start on Taxol and AC. I don't remember the order for MD Anderson. I had Taxol first along with meds that were part of the clinical trial. It is likely I had additional side effects from the clinical trial meds. I didn't have them on every Taxol infusion, and I could tell a difference that the only Taxol days were easier. At some point they switched away from Taxol to Abraxane because I was getting rashes. I think there were some other side effects why we moved away, but I don't remember too much. I remember the rash because I emailed my Dr. a picture of my butt.
A lot of stuff gets fuzzy if you don't right it down. I found a heated pad for my eyes while cleaning up a while ago and it took me forever to remember why I had it, I seriously could not remember. It was because my tear ducts could clog up and my eyes were constantly full of tears that wouldn't drain away correctly.
I suggest starting a journal, I wish I had done that!
I think one of the hardest parts is the part you are in now - waiting for a plan, waiting to meet your team. Lots of unknowns. You will still have unknowns in the future, but right now is likely the worst. That part will get better!
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Blue, I hope you are doing well and I so appreciate you taking time to share your experience with me. I guess misery really does love company.
I don't have any pain or itching, just a "heaviness" in the breast, I suppose from the swelling. I can feel the area of thickened skin though I wouldn't have noticed it if I hadn't seen it notated on "My Chart".
I'm still holding a tiny glimmer of hope that I don't have IBC, but since MDA sent me to that team I guess they have reason to believe that's my fate. I'm ready to meet with them and get this show on the road! No matter what kind, I DO have breast cancer so that's what I need to focus on. I don't believe there is a "good kind."
Keeping a journal is an excellent idea. Though if I survive this I doubt I'd ever want to read it and remember the nightmare. Hope you're having a nice weekend; the weather is beautiful here today. (And may I ask which area of the country you're in?)
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Just popping in to say that my MRI was done over a week after my biopsy, and my breast was VERY purple and swollen from bruising. The MRI showed a much larger tumor than the mammo/ultrasound and biopsy indicated, but my surgeon was pretty sure that was just because of all the blood in there from the biopsy. So don't panic if the MRI shows more "stuff" -- while it is generally considered more accurate, the bruising can distort the results.
Hang in there. One day at a time, and remember to breathe!
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Hello there YesIamaDragon! (Cute nickname) Thanks very much for the MRI info. I still have the little "flex" bandages on my biopsy sites so I guess I'll rip those off tonight because the MRI is tomorrow. (Exactly one week since the biopsies.) I hope the MRI doesn't show any more horror but I suppose it's out of my control so I might as well not bother wringing my hands.
I appreciate everyone taking the time to respond to me; I'm amazed at the "sisterhood" on this website. It's nice to know I'm not alone in this nightmare.
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Hi Jana and thanks for the greeting. Do you live in the Houston area or do you have to travel a ways to get to MDA? I'm in the 'burbs and I HATE the traffic around the downtown area and medical center. It's so difficult to estimate drive-time for appointments because I never know what kind of hold-up there will be on the freeways.
I'm glad that there's not a big crowd in the facility, but I wish my husband could go in with me for the meeting with my doctors and to get test results. It would be nice to have a bit of moral support and another pair of ears!!
I appreciate the prayers and best wishes more than you know. Same going back to you and I hope to see you around.
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lw - I wouldn't take off the steri strips. If they want them off for the MRI, they can do it.
Check into having your husband join with you & the doc either on an open speaker phone line or by zoom. Most docs are allowing one or the other.
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Thanks, MinusTwo. They told me to take them off after a week and tomorrow will be a week, so I think it will be fine. I never had any bleeding or anything from the biopsy sites.
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Ah ha. Well, I was told to let them soak off in the shower if that helps.
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