Calling all TNs
Comments
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Stupidboob, I understand your fear of meds. I have that too! Ugh. But I will tell you how I use my inhaler just FYI. I hold it out about an inch or a little further from my mouth, open the mouth obviously, then I breathe in through the mouth while extinguishing it (if that's the correct word), then close the mouth and hold my breath for about ten seconds then breathe out of the mouth slowly. If you actually go to youtube and search how to use an asthma inhaler it will show you this method. That's what I did, LOL! I also use Advair twice a day, which is for prevention. The inhaler is just more fast acting. The side effects are scary for almost any med, but sometimes you just have to use the darn stuff! If you feel more comfortable seeing a pulmonary specialist I say go for it! Keep us posted. XOXO!
Lydia, remember to breathe! We all get the fear of the unknown. I totally understand that every ache, pain, twinge, upset stomach etc. causes the immediate thought of recurrence/mets! It sucks! I also sometimes wish they would do scans and blood work like they do for other types of cancer follow up care. Sometimes I just tell myself to trust the doctors as they've seen many cases and they will tell me if further testing is needed when I have a problem. I still break down and cry a lot though, even over the smallest things. It's just the unknown that's so hard. Treatments are harsh and change EVERYTHING, so we will have aches and pains that come up that we don't think are "normal", but they actually may be from now on due to nerve damage from surgery and chemo. We just didn't have it before, but we never had damage from surgery and treatments before all this. Hang in there! We get it and we are all here for each other. HUGS and prayers for you. Remember deep breaths!
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Lydia,
At my final round of chemo, my visit with my onc ended with him telling me not to be surprised if I experience fear and even a little remorse that my journey has ended. (I still need reconstruction but he doesn't count that.)
I thought he was crazy when he said I might feel abandoned because there wasn't someone checking me out every other week anymore. I laughed at the time, but I'm starting to get it....
I am also BRCA1 pos. My Aunt got tested but my brother refuses. He has kids too so I get how you're feeling about your son. I feel like the men just don't understand how important passing down this genetic knowledge is! The mutation has been around d for 1000s of years...it is dominant and not going away!
I tell myself, "Even if you knew you were BRCA pos but had never had cancer, you wouldn't dream of freaking out over every little pain. The doctor told you to contact him about pain that lasts for several months....you would do that anyway even if you never had cancer because it would seem odd."
In other words, when it comes to aches and pains, I focus on thinking like the old me. I make my first reaction something like, "pulled muscle?" Instead of, "omg my cancer is back!"
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How well do tumor markers work to check recurrence?
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Brookezine, My Onc doesnt put a lot of weight on them, have you had a report?
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Lydia, the road of survivorship has a few curves for sure. We get so used to being in treatment that being on our own is odd, at the least. As R2S says, try thinking like your former self. Give yourself time to go through the mental recovery as well as healing physically. Hang in there it gets easier to feel like your old self. BC changes us forever, but I refuse to live the rest of my life looking over my shoulder for that dang Beast.
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well said Meadow, needed rhat
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Luvmydobies thank you for sharing that info. I was a big girl today.....:) I finally used it. I will try your way. I got a little relief but I know I have to really learn to use it more to get the best results.
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Just catching up and find it odd how the topic if about fear. Once again I'm having bad back pain. It's never constant so I NEVER know how to apply the two week rule.
Just so tired of worrying that the cancer is back.
Taking a vacation starting tomorrow, hopefully the pain will subside.
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You're welcome Stupidboob! The Youtube video really helped me to do it the right way. I'd post a link but am not very computer literate! Sorry....
Nettie, try to enjoy your vacation!! Did I read somewhere that you have scoliosis? If you do, could that be why your back hurts?
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Luv, yes I have scoliosis, but I never had pain like this at all before. I mean not even close. And this pain affects my legs abd
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Nettie, I'm so sorry about your pain. Maybe you should talk to your Onc and see about a scan for piece of mind at least. HUGS!!!
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I've tried, I've asked for scans. I was told no.
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Ugh Nettie. I hate that! My primary doc has told me if she thinks I ever need one she'll order it if my Onc won't but that would cause a conflict because I would have to tell him if something ever did show up. Sometimes you have to advocate for yourself though I guess! Please enjoy your vacation! XOXO!
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Hey all....I hear you about these mystery type pains....ugh... I still think the 2 week rule is a good thing.if you can follow it.
Remember...even if we are cancer patients...we can still get normal stuff....like colds, flu, headaches, arthritis and it really isn't related to cancer....one time I had burst blood vessels on the cancer breast and was freaking until I realized that I had lifted 30 plus pounds over my head to a very high shelf...they went away in a few days.but I felt the terror!
so..anyway..maybe not much help but remember...we really are "normal" and we still can get the "normal" stuff do...it just freaks us out alot more...
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hi Titan! Thanks again for getting all of us triple negs together!!
I am so glad you posted that. You're absolutely right and it helps to be reminded. Turn the calendar page, close the door and get back to your life There is nothing to be gained by carrying it around like a ball and chain
I know it doesn't feel safe, but take those first steps into your new life and leave the "C" word behind Been there done that Trust me
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nettie1964 I am sorry about your pain, but you know a little bit a piece of mine might be brought to you if you just go to the ER and tell them you are hurting and don't know why. I know expensive but at least you might get a cat scan...........then if anything abnormal shows up, you can take it to your oncologist and go from there. It SUCKS that you would have to do that, but they just don't scan some of us and I think that is where we all get in trouble....(my opinion)0 -
Hello All,I've been having headaches since last Monday. So today I met with my MO who offered a brain MRI. I am going next Monday for the scan. My MO is really open to doing whatever I feel is best. I think that I might be experiencing side effects from the chemo or maybe I'm developing migrains. Not sure. Anyway I'd rather be safe then sorry.
I'll let you know the outcome of the scan sometime next week.
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Hi all, haven't posted in awhile. I have been in reconstruction mode. I had a hip flap on August 20 and was doing great. I went back to work 1/2 days at 5 weeks post op and was doing ok . My non canser side looks amazing, but my radiated cancer side didn't fare so well and they removed the flap last Friday ( seven weeks after my surgery) the blood supply just wasn't good enough. Now I have one nice foob and one crater. My second stage of reconstruction is in Dec so they will fix it then. Ready to get it over!! My MO has me scheduled for a follow up CT scan in November but so far I remain NED. Yeah!!! We are also taking our grandsons on a surprise trip to Disney World in November to see it decorated for Christmas!! I didn't schedule my CT until we got back,, lol!! Just a precaution!! Hope everyone is doing well.
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Hi, girls :-)
I have a few questions that I hope someone wouldn't mind answering for me, please.
I am Triple negative and currently going through chemo. I finished my 4 Taxol treatments and I have
completed 2 A/C treatments with 2 more to go. THANK GOD!!! Between the SE's and this chemopause,
I am having a heck of a time, especially, with these hot flashes!
Anyway, after I finish up chemo I want to have a double mastectomy. My Mom had breast cancer 3 different times,
and unfortunately, she lost her life to it back in 2011, so I am not taking any chances with having this return.
Question is I never realized until recently that there are a number of different types of mastectomy.
Would anyone mind sharing which mastectomy they chose and why? Do we even have a choice?
I want as much gone as possible. I am not worried about nipples. I will just have tattoo's :-)
Last question, if all goes as planned I should finish chemo in a month.
Do most MO's make us wait a while after finishing chemo to have surgery? I asked my MO about this last Thursday
thinking that I should make an appt. with my BS to get the ball rolling for surgery, but he said to hold off.
Does anyone know if this is common? I do not want to finish chemo the middle of Nov. and wait until January for
surgery, you know?
I would greatly appreciate any information or experiences someone feels comfortable with sharing.
Thank you all for being here!
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JoeyJames............sorry you are here......:( It sucks we all have been invited to a club we would not choose to go to.
I had a mastectomy but my doctor chose what kind, except I did tell them I wanted it all gone. It did not do me any good though as it came back in the lymph nodes up the chest and between my pectoral major and minor muscle. I thought if I had a mastectomy I would have NOTHING to worry about.....I was wrong. I would still have the mastectomy again though.
I am not sure the exact amount of time, but everyone I know personally that had the chemo first, did have to wait like a month to 6 weeks before surgery. Your body has to heal some.
Best of luck
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Hi, Stupidboob :-)
Thank you so much for sharing this with me.
Ugh, it makes me sick to my stomach, though, thinking we go through ALL of this and the cancer still comes back! I had no idea
how common this was until I started reading these threads.
Back in 1986 my Mom had breast cancer, she had a lumpectomy, went for a months worth of radiation and lived another
20 years without breast cancer.
Granted it did come back, but it took approx. 20 years.
Man, I hope we are all making the right decisions.
Sorry, just thinking out loud.
Hope you have a great day!
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Hi JoeyJamesMom. I did surgery first, but I was anxious to have my tissue expander to implant exchange surgery as soon as possible after finishing chemo. My plastic surgeon said as long as my white counts were good I could have surgery as soon as 6 weeks after chemo. Unfortunately, my port became infected and I developed a frozen shoulder, so my surgery ended up being delayed for 4 months! I think as long as your doctors are happy with your blood work after chemo you can have surgery fairly soon.
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Thank you, TifJ.
Wow, you went through a lot! I am sorry. I pray you are healthy and well now.
Another question for you girls, please. I have read where some MO's will check blood for tumor makers , but others will not.
Anyone have any thoughts or experiences with this? It is so difficult trying to decipher what is true/accurate and what is
not when we are all told different things :-(
I meant to ask my MO last week and completely forgot.
Many thanks!
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I've also heard mixed feelings about tumor marker tests. My Onc says they're really not reliable because many things can raise them. He doesn't do them. He's been doing this a long time as he is in his 70's. I have to trust him but I do wonder if they should do them. I still don't understand why they don't do scans after treatment unless symptoms warrant one! It's very worrisome to me. But they say if cancer spreads is doesn't change the outcome even if you catch it sooner rather than later. It makes no sense to me but I guess they know more than we do. Maybe someone with more knowledge will help answer your question better. I'm just telling you what my Onc told me.
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Thank you for the information, lovmydobies :-)
Hope you have a nice, calm and worryfree day!
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JoeyJamesMo yes it sucks and I hate sharing my story as I would never want to scare someone but at the same time, I do want people to be aware. When I went in, I was only going for a 3 month check up and I thought all was well and we would leave get our celebratory milkshake and go about our day...........wrong.......so I share so others will keep their appts. and also it can play into their decisions for themselves. I hope to get 20 years.
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Does anyone know if Lymphedema can cause shortness of breath?0 -
stoopidboob,
I'm not sure about that, but right now almost everyone I know has an upper respiratory infection....THAT could and it's that time of the year!
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Stupidboob, have you asked anyone your question about lymphedema on the lymphedema forum? They may know.
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Hi, again Stupidboob :-)
You mentioned this above:
It came back in the lymph nodes up the chest and between my pectoral major and minor muscle.
How was that found? An MRI, CT Scan, or something else?
Sorry, I do not know anything about lymphedema, but like Radical mentioned a lot of infections are going around :-(
Personally, though, I would get it checked out sooner rather then later.
Hope you feel better soon!
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