1st Meltdown
Finally had my first meltdown today. I was scheduled for an MRI, but was unable to complete it because I coughed. They actually tried twice. I couldn't even complete the scan without contrast, so we certainly didn't get to the contrast stage. The only positive thing I can say is that they said they would not charge me for today since no contrast was administered. I had trouble sleeping last night and woke up early this morning worrying about the MRI because I had a problem with coughing during a MRI on my back a couple of years ago. I can honestly say I've dreaded the MRI more than anything else so far, including the biopsy, because of that experience.
I am rescheduled for Wed, so if I can get through it, my appointment with the breast surgeon won't have to be rescheduled. The MRI is absolutely critical because two different radiologists (one who did the mammogram and one who did the core biopsy) did not find anything in my breast in the mammogram or the 4 ultrasounds conducted by two different technicians as well as both of them. Nevertheless, I have a malignant lymph node that they have tentatively diagnosed as breast cancer primary.
I have already called my pulmonologist's office and gotten recommendations on specific medications to take (prescription cough medicine, a couple of different OTC nasal sprays and my minimal dose of Xanax) on Wed. So we have a plan, and I'm feeling more composed.
Obviously, you can't help worrying about where the cancer may have spread when a lymph node is involved, but it is tortuous to be praying you do have BC rather than cancer of unknown primary. I never even realized there was such an actual type of cancer.
Thanks to all of you who replied to my previous post. I lurked on this site for 2-3 weeks before I posted the first time, so I knew how informative, responsive, supportive and kind you were.
Comments
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Bella - Crossing my fingers you get through the next MRI. The first MRI I had was without relaxing meds - big mistake - now I take the valium they offer!
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Bellaskids - All I can offer is what you've already thought of - taking cough syrup (with codeine maybe?) or Xanax the next time. Wishing you the very best of luck on Wednesday. Try not to stress too much and we'll all be in your pocket (trying to hold your chest down) for that MRI. (((HUGS)))
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Bella, so sorry you had a difficult time. I hope this next time goes better for you. I'll be sending good thoughts your way on Wednesday. Please let us know how it goes. {{gentle hugs}}
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Bella,
From one Oklahoma girl to another, I will be praying all goes well on Wednesday. You can do this!
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Thanks for your kindness and suggestions. I actually debated whether to take the Valium or my Xanax this morning and decided to go with my Xanax because I was planning to take care of my grandkids after the test. I wasn't sure how loopy I'd be with the Valium.
I have kept my 4-year-old grandson and 2-year-old granddaughter since they were born. When I notified my son about my biopsy results, I told him that he and his wife were going to need to plan on finding alternative childcare arrangements, but I wanted to have the kids as much as I could before surgery and/or treatment. Since my DIL works part-time as a teacher, I generally get the kids between 10:30 to 11:30 each day. I was planning to keep them through Thurs. this week since my BS appointment is on Fri. When we got home, my husband did call her, at my request, and asked her to find someone today, despite the late notice. He also asked her to find someone for the rest of the week since we have the MRI Wed., a house sale closing that was moved from Fri. to Thurs. and the BS appointment on Fri.
At the MRI facility (Mercy Women's Center for you fellow Okies), they told me they wouldn't be able to give me Valium next time if I took a narcotic cough syrup. I would love to take the Valium, but I think it will be more important to take the cough medicine and I can still take a Xanax (or 2???). ( My Xanax is the lowest dosage prescribed.) I have already started one of the nasal sprays because the directions said they would be more effective by the second or third day.
I've also come up with a scheme for "practicing" lying still in the required position for the amount of time the technicians told me it would take. If you're squeamish, stop reading now. :-) I am going to sanitize one of the kids' potty seats that goes on a toilet, and use it as the donut hole you put your face in. Don't have anything to use for my boobs, but I can practice lying still on an imaginary hard narrow table while my husband times me.
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whenever I cough, I like to suck those cough drops from health food store which has zinc in it. Works very well for me. Can you suck it during the MRI?
sorry...the image is soooo huge...not sure how to shrink it
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Bella - I go to Mercy too but I get my MRIs at the Breast Care Center across the street. Dr Hollingsworth is wonderful. Are you going to see Dr. Boggs? IMHO he is one of the best around. Too funny about the potty seat!
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Thanks everyone. I made it through 2 dry runs at home. For the second one, I took/used my drugs in the order recommended by pulmonologist. I'm much more confident I can get through it now. I'll definitely let you know how it goes.
Juneping, I can suck on a cough drop during the MRI. In fact, they gave me one on the 2nd attempt. Didn't get this brand in time for MRI, but I intend to get some just to have for the future.
Farmerlucy, Dr. O'Dell did my biopsy. I've been referred to Dr. McWhite (BS) for my appointment on Fri. Is Dr. Hollingsworth an oncologist? His name sounds familiar. I think I may have read it in one of the books, I was given in my "goodie" bag from Mercy after I was diagnosed. What is Dr. Boggs' specialty? I asked my pulmonologist to give me a recommendation for an oncologist. I have absolute, unswerving confidence in her referrals. She may refer me to which ever one of yours who is an oncologist.
Is the Breast Care Center on the west side of Meridian?
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Bella - thinking of you today! Dr. McWhite may be Dr. Boggs new partner (he is a BS). Dr. Hollingsworth is head of the Women's Center, he used to do breast surgery and I think now he mainly does research and genetic counseling (that is how I met him). Initially Dr. Boggs referred me to Dr. Reitz for my oncologist, later I transferred my care to Mercy Oncology in Norman because it is closer to home.
The Breast Care Center is on the westside of Meridian.
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Bella,
I go to Mercy, also. Dr. Keefer is my oncologist there. Dr. Morrison is my rad onc. I would highly recommend that you request your BS to refer you to Dr. Keefer or Dr. Reitz. I have heard good things about him, also. The reason I say that is when I was diagnosed, I had no idea who to use as my oncologist. Dr. Talbert, my BS( used to be Dr. Boggs's partner but Farmerlucy just told me yesterday that she is now at OU Medical. I had no idea.) referred me to Mercy Oncology. I was referred to a doctor who graduated from OU medical in the 1950's. That's way before I was born. After meeting with him once, I knew there was no way I could continue with him. I liked his nurse a lot, but I couldn't relate to him at all. He didn't talk to me. He would just say what he thought and his nurse would then explain everything to me. Plus, he wanted me to do chemo because my tumor was over 1 centimeter, without doing an on oncotype test first. I had to ask for it, even though I was the poster child for it: early stage, node negative. I called Dr. Talbert and asked her to refer me to Dr. Keefer for a second opinion. He told me that an oncotype test would have been his first step. I kind of think that when you don't have an oncologist in mind, then Mercy gives you this doctor because I doubt his patient load is heavy. I'll PM you his name if you want.
Thinking of you today. I get all of my imaging done at the Mercy women's clinic, too. I have had diagnostic mammograms, ultrasounds, and a MRI there. You are in good hands.
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BellasKids - Thinking of you and hoping all of your practice runs help the cause! (Probably shouldn't mention runs in conjunction with the toilet seat prop, hmmm?)
Please let us know how it went this time...
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SUCCESS! Thanks for the recommendations on oncologists, Okiemomof4 and Farmerlucy. I'm so new on this site, I don't know how a PM works. Will you PM me the name of the Dr. you didn't like? Does a PM come in as an email or how will I get notification that I received it? Great pun, AZ85048.
What is an oncotype test? If the oncologist doesn't suggest it first, should I request one before I agree to start chemo?
Thanks for all your support!
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Congrats on completing the test. I know that is a big relief for you. No more practice required:)
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Hi Bellaskids,
Just sent you the PM(private message). Should show up on your toolbar at the top as a notification. Kind of like facebook. Glad you made it through the MR!. Guess those potty seat practice sessions did the trick. lol.
I don't think you will be a candidate for the oncotype test because you have lymph node involvement, unfortunately. The oncotype is a test that looks at the profile of your tumor and the genes in it to see if it is likely to recurr and it can show how effective chemotherapy will be as a means of treatment.
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BellasKids - YAY! WOO HOO! I KNEW you could do it! So glad that part is over for you! Please keep us posted with your next steps... ((((BIG HUGS!))))
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Bella, I'm so happy to hear you got through your test! It must be such a relief. Please keep us posted on how you are doing. Best wishes through your process.
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Yay!!!!! Super job! So glad for you! This time I hope they find a teeny tiny little something that can be easily removed. Your Oncologist can tell you all about the oncotype test. This whole process is a hurry up and wait deal. If I can help with anything please let me know. Big hug!
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Just jumping in to say 'congratulations' on your successful MRI. I found this thread fascinating as everyone talked about their oncologists.
When I was first diagnosed, I felt lost, wondering how on earth to find my "team". I was fortunate when the wife of a friend of my husband talked with me and gave me the names of her "team". Talbert was my breast surgeon; the plastic surgeon whom I wanted (and worked very closely with Talbert) was no longer working with Mercy hospital, so, Talbert contacted another plastic surgeon to do the "immediate reconstruction". I am not happy with that plastic surgeon and am in the process of switching to my first choice, now that I don't have to be limited to Mercy for my exchange surgery.
Dr. Talbert was my breast surgeon and Dr. Theobald is my oncologist - both were contracted with Integris, Talbert (at that time) was contracted with Mercy, where I had my surgery.
I think you are in good hands if you follow farmerlucy and okiemomof4's advice for doctors. Good luck from a fellow Okie!
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Hi Swoosieque, Good to find another Oklahoma gal. Thanks for giving Bella more info. When I was first diagnosed, my gyno here in Stillwater recommended Dr. Talbert and Mercy to me. I didn't know much, but I did know I did not want to be treated locally. She recommended Mercy to me because of their whole team approach, which I really like. But I had no idea who to use as an oncologist, and I think I got the one I got because I didn't have a preference if you know what I mean...
I am really sad about Dr. Talbert. Do you know if she still seeing patients at all? I told her when she discharged me from her care that I hoped I would never have to see her again..lol. But, heaven forbid that I do, I would really like to use her again. She did a fantastic job on my surgery!
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Bella - I hope you get some questions answered today. Thinking of you.
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Me, too, Bella!
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My husband and I really liked the surgeon. She allowed
plenty of time to talk to us and answer our questions. My appointment was
at 1:00 and we didn't leave her office till 3:00. When I told her that I was being very careful about what internet research I was doing, and that I had only been going to the ACS site and this one, she said good. In fact, she said, "Excellent!" when I mentioned this site.The bad news ( at least as far as I was concerned) is
that they did not find anything in my breast from the MRI. The doctor did reiterate what the radiologist, who did my biopsy, told me that
sometimes the primary tumor burns itself out.I will definitely
have surgery. In addition to removing the malignant lymph node, she
will remove approximately the lower 1/3 of the lymph nodes under my
arm. When I asked her to give me a ballpark figure, she said possible
10-25 nodes.There was one unexpected issue she threw at us. She said there are 2 schools of thought when the lymph nodes are involved, but no tumor is found in the breast. We can opt for just removing the lymph nodes and monitoring the breast, or we can opt for doing a mastectomy when the lymph nodes are removed. She said the they would probably want to do radiation if we only do the lymph nodes, but probably not if I have a mastectomy. I was inclined to immediately say let's do the mastectomy since I had already decided I would do that if they had found anything in my breast, but I sensed my husband wasn't ready to make that decision. We are going to consider our options over the weekend. I did tell her to schedule enough time to do the mastectomy if that ends up being what we decide to do.
I will have more blood work
and a PET scan before the surgery. She actually said that normally she
would do a CT of the chest (already done), abdomen and pelvic area, but said
that we could certainly do the PET scan instead if that was what I
wanted. I did. She said she would not normally schedule a bone scan at this time unless I identified symptoms. They could not schedule the PET scan
until Mon. because no one was there (where the scan will be done) to do it. It will be scheduled for
sometime next week.My surgery is tentatively scheduled for 12:00 on 3/12 to
allow time for them to get the PET scan results. She will
be out of town the week of 3/17 due to spring break. She did not want to
wait until after spring break to do the surgery.I will be referred to an oncologist after surgery.
.
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BellasKids - I'm so GLAD you liked the surgeon! That and the fact that she listens to and respects your wishes is a key element in this special relationship you will form. And I think it's very wise of you to 'sense' what your DH is or is not ready for at this point He's going to be right there in the trenches beside you, so you both need to be comfortable with your decision(s). 10-25 nodes?
Not to scare you, but I would inquire about the threat of lymphedema after losing that many lymph nodes.
We'll all be right there in your pocket for that surgery on 3/12, so be sure to wear a big shirt! Please let us know how you're doing in the meantime. You CAN do this!
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Bella, I didn't have a good impression of my surgeon at the beginning. I went with her because she seemed to know her stuff. Now I don't know what I would do without her. That relationship is an important one. Your lucky to have found one you like. I'll be thinking of you on Monday when you have your PET scan. Best wishes!!
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Bella - I'm glad things are getting started. FYI - when I had my preventive mx, I'd had all the screening 2 1/2 months earlier. Nothing was seen, not even on the MRI. A 1.1 cm IDC was found in the final path. My breast density prevented them from seeing much. The same thing happened to Crescent5. I'm glad your BS had so much time for you. She sounds great. Thanks for updating us. Hang in there.
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AZ85048, I just hadn't thought about having more than the malignant node removed--not that I didn't realize they would remove more of any tissue when removing a tumor. It just wasn't something I focused on during my quest for information and definitions of various terms From my research I knew about lymphedema. But I didn't even have to ask her about it. She brought the subject up and discussed it thoroughly. I was already bummed by the fact that it can occur weeks and even years after the surgery. After I'd read all of the restrictions; e.g., avoiding sunburns, always wearing shoes (I kick mine off as soon as walk in the door), rubber gloves for house cleaning (what's that?), no professional manicures (I didn't get them often, so no great loss)., electric razors, etc.; I was afraid I might have to give up gardening. I never gardened before we bought our current house 7 years ago, but it has become a passion of mine--so therapeutic and rewarding. I was relieved when she assured me that I would not have to give it up-- just wear long sleeves and gloves. Long sleeves will be pain in our OK heat, but I had already trained myself to wear gardening gloves because it was too embarrassing to always feel like my nails were dirty when I went out. She did tell me to call immediately even if my ring felt tight.
To everyone else, thanks for your support. I know you will be thinking about me during my PET scan, surgery and the rest of my journey. It certainly helps to have "sisters" I can talk to without having to primarily be focused on editing everything I say or write, casting news in the most positive way, reassuring my family and friends, putting on the brave face, etc.
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Bella, have seen an oncologist yet? They may have other options which will work equally well but without as much damage risk.
Good luck to you for the best outcome.
Carp;
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Bella,
So glad you liked together surgeon! I certainly understand your feelings about the mastectomy. Before BC, I always said with much bravado that if I ever got BC, I would get those babies taken off and get some new, perky ones. Stupid! Stupid! Stupid! When I got my diagnosis, my surgeon told me that I could have a mastectomy, but I was an excellent candidate for lumpectomy. She would do want I whatever I wanted, but it had to be my decision. I really wanted her to tell me what to do, but she wouldn't. The more I thought about mastectomy, the more anxious I got. When I decided for the lumpectomy, I felt peace about it.
You and DH will come to the best decision for you. I will be praying for you as you go through these next procedures and make your decisions.
Hugs!
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BellasKids - I'm so relieved that your surgeon is already on top of the threat of lymphedema! Now I really like her, too! Sending you a BIG HUG!
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