Lumpectomy Lounge....let's talk!
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Leslie, please try to have someone with you tomorrow at your appointment. If you have a nurse navigator, have her with you. Or at the least record your meeting with the doctor. Write down your questions. You will not remember them if you don't. And write down the answers you get. You do not have to make a decision tomorrow. You can take time to consider all your options. Don't be rushed. It is rare for anything to HAVE to happen fast with BC. If you have questions after your appointment, post them here. As you know, we have a wide variety of experiences, diagnoses and treatments. We'll be glad to answer you. And check out the articles here on BCO. I know you feel overwhelmed right now. Take a deep breath. If you are still feeling overwhelmed tomorrow, ask for something to help with the anxiety. Many of us have found that that can help - with either/or anxiety and depression. BC catches us all off-guard. Just know we are here for you.
HUGS!
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Leslie, your surgeon should be advising you on whether a mastectomy is best based on your DCIS at the margins. If the surgeon won't advise you then talk to the RO. Do you have an appointment with the RO yet? Also, has the surgeon considered simply going back in for clean margins and removing the nipple? That should be an option if you don't want mastectomy. BTW, yes radiation makes recon more complicated however it is doable after rads. I am in the process of recon and I had radiation after mastectomy.
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Leslie you have to make it public. You can put more than one diagnosis in your information. Check out what Molly has. But each thing has to be explicitly made public. It is very confusing.
HUGS!
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I think I did it and I think I got everything in the right spot. Thanks. I didn't see I had to go back to settings to do it.
Molly, I'm seeing an oncologist tomorrow. I know she sent in requests to both a MO and a RO. I was so surprised to get a call that they have an opening for me tomorrow, I didn't even ask which oncologist this is. I guess I'll find out tomorrow.
Peggy I had my mother with me today and my sister will be with me tomorrow. No worries there.
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Peggy,
I think I may have same diagnosis as you. Except I am prog negative.
How long was your radiation. Do you have SE with hormone pills
Positive
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thanks, I am not needing Chemo and of course I have been lifting stuff it is my right side and because I have little pain I am forging forward.
Yes, I know city of hope is good.
I finally bought a soft bra or semi sports bra he feels better
I haven't started to exercise or walk yet I should I leave on a trip tomorrow so somewhat have been dogging it.
My breast is still red and looks like a mild rash. I am wondering if you body tires out trying to heal. Sometimes I feel like a 3 year old as I am so inexperienced in any wounds, surgery, etc
I am not taking biotin
Positive
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Positive, I had 33 radiation treatments, that included 5 boosts. I had no trouble with my skin. I didn't start using Aquaphor until the RO told me to at treatment #17. I've also had no problems with my Arimidex (I take the generic made by Teva since the fillers used by some manufacturers can cause SEs and Teva seems to cause the fewest problems with that). Others have found that they need to take the brand name due to fillers. I started out with Teva. Many of us have no problems with Arimidex. Some do. You never know until you give it a chance. When the time comes for you to start on an AI, keep that positive attitude and don't expect problems. If they crop up, then you can deal with them (and that's what my MO said too). Hope this helps.
HUGS!
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Positive, I think that it is easy to forget that "even" a lumpectomy is MAJOR surgery and, yes, your body is working very hard to heal everything done to you. That's why you shouldn't overdo it and should rest when you're tired. It will take several weeks before everything is healed and is at its new normal. Watch the lifting with your "bad" side. Having nodes removed (yup, even one) screws up things. You don't want to have blood pressure, IVs or even injections done on that arm. Gradually bring that arm back online, don't hurry it. Watch that lifting unless your surgeon has said it is okay. It's hard when you do feel good.
HUGS!
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thanks Everyone....I agree it can get confusing.
First, I know nothing about cannibalize but I keep seeing and hearing they are making a pill which I think is oil I don't mean to use it for pain but for killing cancer cells.
Second, KD theatre , I went home with nothing just my strips on incision by my nipple.
I am now wearing this soft bra I just bought. Maybe my BS told my husband after surgery but nothing to me.
I am beginning to think I was a simple case to her or that she thinks I know more than I do. I also asked to be set up with their patient group and heard nothing
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Leslie --- in Canada, they will not order an Onco DX, unless the HER2 comes back negative or indeterminate. You can not go by some of the experiences the ladies here have had, as our medical system is completely different.
In Canada the FISH test is the gold standard of the HER2 reading. They will try that before they do the ONCO test because it costs a lot of money and has to be approved by the government, before it can be sent to California.
Your MO (medical oncologist) will take over now from the surgeon. I have not seen my BS since the 3 week follow up after the surgery. Until things are straight with the MO, the RO will not do anything but giving you information at this point. It has to be decided if you are doing Chemo or not and that is the decision of the MO and you. The Canadian Government has established a deadline, for the Chemo to start. So until you have the ER/PR/HER2 information, you will not be able to make many decisions.
If you own a Smartphone, find a recording program. I recorded the information sessions with my MO, because there was just too much information to try to remember. That way you can listen to it at home and study the website here for the type of cancer and any treatment options he/she offers. Then you can make a list of questions to ask the next time you have an appointment. They will also give you a shit pot full of information booklets
Ladies, This has nothing to do with information you can give on handling SE's. But how we get to that point is very different and our government has a big say it what can be done and when.
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Thanks Peggy,
I guess I am anxious, idle time doesn't help.
Funny how my mind thought get thru surgery, then radiation and I am done. I didn't factor in wait time to heal
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Positive, if you haven't had surgery before and think of the Lx as minor, out-patient surgery, then you don't realize that it really is major surgery and an assault on your whole system.
HUGS!
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Elizabeth, you are so right, but not just with the differences between USA and Canada, but even from one state here in the USA to another, and even one center to another. I've been amazed to see some of the differences, even when it comes to age. I guess we all need to remember that whatever we do, it is often based on very specific guidelines and requirements. Thanks for the reminder!
I saw my new GP today and just loved him. What a difference and relief. Now I just have to like my new RO tomorrow and I'm home free!
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Dara that is awesome and I have my fingers crossed for you tomorrow. HUGS
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I just got home from radiation and my RO gave me the best compliment. He said my skin is the best he has ever seen in 20 years, he just could not believe it. I told him my routine included eating many types of fruits and veggies, getting my protein intake, drinking plenty of water, applying the calendula salve every few hours and sleeping until whenever I wake up. Since my schedule is off a bit with insomnia, sometimes that means I am getting up after 12pm. There are some nights I can't sleep until 3:30am. I also told him that I had set aside the month of October for no stress, no deadlines, just relaxation and beading. No small kids to chase, a husband and daughter that are self sufficient, and a dog that loves me to the moon and back. He is eating a carrot in this picture.
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Well Elizabeth, that is interesting. Thank you. Now I'm even more confused with the BS saying they will do the oncotype testing when I don't have the HER2 back, and the fact that she said I will see her yearly now, after my mammogram. Then I just looked at her and said, but I"m going to have rotating other tests, not just a mammogram. She said no, you will have a mammogram. I then reminded her that my mammogram, on the day of the positive biopsy, came back all CLEAR! Then she said oh yeah...you will need an MRI.
Ok. I'm going to stop stressing tonight and just wait to talk to the MO tomorrow. Maybe my BS was talking out of her hat and just confusing me more than she needed to. Hopefully the MO will shine some light on the subject.
Interesting side note...the oncologist they have given me is the same one my mom had 3 years ago for her Hodgkin Lymphoma. I'm happy, because I liked her when I met her then. She was very good with my mom.
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Dara, how wonderful.! Fingers crossed tomorrow will be as good.
Michelle, that's fantastic about your skin! Cute puppy
Leslie, I don't think it's necessary to have the HER2 status back for the Oncotype, though I am surprised you don't have that information now. My BS was the one who coordinated all my testing - mammograms, MRIs etc. My first year I had both a mammo and an MRI. This year I had a 3D mammo. They prefer to do fewer MRIs if they can. That's great that you like the MO you've been assigned and know her. Good luck tomorrow!
HUGS!
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Leslie,
I am the least experienced here, but I would say learn all you can here, speak up and guide or teach your doctor if you cannot get a new doctor. I had to advocate for patients in my career and in specialized fields many doctors didn't know about. Rare disease groups. I have organized trainings for community hospital medical staff, but BC is not my area at all.But it sounds like you will need to advocate for guality health care for yourself. Ask everything from the women that know in this group.
I felt I had to do all the work when it came to getting my test results to everyone from my pre op physical to my Mo. I had to hand de,Uber my biopsy and mammogram disc. So I would take everything with me to my appointments. Once they wanted to give me another chest X-ray and I told them I just had one. At the time, I just didn't let me bother me as it is hard to get office staff to do it it My main doc internist said it is all on computer and why don't they just look. I said to hear believe I told them but it was easier to hand it to them
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Michelle,
Cute dog, I could use a puppy now.
It is nice to get a compliment. When it comes my turn for rads, I hope to follow what you do. The eating healthy will be a challenge.
Take care
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Leslie --- Just get the tape program for you smartphone and tape everything. They will hit you will a lot of information that does not make a lot of sense until you hear it several times and compare it to the information on this site about the different cancers and treatments.
My primary care team at this moment is, my MO and his nurse. If I have any problems, I call them... If the problems are after hours, I go to the emergency room at the hospital attached to my Cancer Centre... This is where I had my Lumpectomy so they have all my records.
I am being treated at the Juravinski Hospital & Cancer Centre in Hamilton, ON.
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My primary breast team is my breast surgeon and nurse. I can relate to them very well. My MO is fine, but my trust is in the BS. I also get along very well with my RO, who sees me one time per week. As I get to know my MO better, my feelings may change.
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From what I understand, the reason they will not order OncotypeDx on a HER2+ tumor is that for HER2+, chemo is a given (Herceptin is almost never given without chemo) so the ODX test is moot. But I am shocked that they still don’t have ER & PR results yet—I got mine two days after my core needle biopsy and again 5 days (3 business days) after my lumpectomy. Sounds like bureaucracy is slowing down the path lab.
Not all fish pose mercury poisoning dangers. Even those that are higher in mercury if eaten too often are fine in moderation. And not all fish are high in mercury. You’ll be fine with trout, halibut, cod, branzino, sea bass, mahi mahi, opah, scrod, haddock, etc—and if you eat salmon even 2-3x/week you’ll be fine. Canned tuna too. Just be careful about mackerel, swordfish and bluefish. If you need animal protein and want to keep your mammal meat intake down, eat poultry (free-range, air-chilled) and cage-free pasture-raised organic eggs (pricy but delicious and you know you’re making the hens happy insteade of enabling the abusive “battery-cage” bulk egg farming industry).
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Going off the radar for awhile—have to leave for Iowa City tomorrow and will be busy during my music conference through Sunday (may have to stay over Sun. night if it gets too late to drive home after my concert). Spent all evening trying to print out business cards & handbills (still need to cut the latter to postcard size—hope I can make the hotel's business ctr. in time or locate my buried paper cutter before I hit the road), and still need to pack (incl. my meds, which is truly tedious) before going to bed. Didn't help that I had to shop today for the Halloween candy in case I don't get home till Monday. My Cubs got crushed tonight—probably because I bought the hats & t-shirts today.
RO called and says the fibrosis matches the pattern of my map, and is nothing to worry about.
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ChiSandy, thanks for the input on the fish protein. I really love salmon, but could probably try something else. Have a wonderful time on your road trip. I will miss your wisdom as my radiation winds down, 6 left. I could not have done it without your support and the support of all of the gals on this board. Big hugz to everyone!!!
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Positive, keep an eye on your mild rash. Take a pen and draw the outline of the rash. If it gets larger, warmer, or itchy call your surgeon. You may have cellulitis, an infection at the skin level requiring antibiotics. Very common after breast surgery.
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Ladies, can I just say how much I love my prostheses? They feel like normal breasts and look like my formerly big, natural breasts. I'm still hoping to have reconstruction, but in the meantime it's nice that I look normal with clothes on. I just have to watch out for wide scoop necklines--when I bend forward you can see clear to my bellybutton.
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Sandy, happy playing this weekend! Hope you found the paper cutter!
Poodles, how nice that your prostheses work so well for you. At least they give you an option, even if it is one you do not prefer.
Michelle, do keep an eagle on that breast to make sure it stays looking beautiful!
Have a dry week everyone (except California which desperately needs the rain).
HUGS!
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And north GA needs a tropical storm. We are in extreme drought condition. Water and fire restrictions. All the rivers and lakes are critically low.
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Poodles, I wish I could send you some of our rain! We don't have huge quantities at a time, just continual drizzle and murk till I swear I'll be going moldy. And next weekend the clocks go back here, and sunset will fall at 5 pm... anyone else who gets SAD?
I love to hear that you're happy with your prostheses, and others who have commented on using fillers to even things up. As a newbie to all this, it's good to hear that the things you start out fearing turn out to be doable and even positive. But I hope you get to ditch them because the reconstruction goes ahead. Peggy, I have been cheered by your strapline several times when things weren't going my way, I think I need it framed for my wall.
Michelle, great to hear that rads have gone well for you and will soon be done, I think I will be most envious of the valet parking, which sounds a great way to start off stress free.
ChiSandy, have a great time this weekend!
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