Calling all TNs
Comments
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Lovely~ I'm in pain everyday. I had an MRI yesterday and the nurse (I had to be medicated) told me the MRI will show all the damaged tissue. I can't wait to see this picture!
Hi everyone else, this thread moves quickly, I like that. Will check in more often, need to go back and catch up!
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Lovelyface - it's interesting because I've had a lumpectomy, then Mammosite radiation, then BMX, then external radiation and I don't feel much of anything on my cancer side. If you're in pain, something is wrong. And if your BS is ignoring it, that's BS and you need to find a new surgeon!
Sagina - so sorry you, too, are in pain every day. This battle is tough enough without having to endure pain.
I now have the email address of my MO. She doesn't give it out to too many people, which is interesting because many of the Dana Farber docs encourage email. My RO said he and his folks are anal about responding in a timely manner.
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Sagina, I was dx in July and you in October, so it is interesting that you are having pain too. I did not have pain before, it only started a few weeks back. I am wondering if you have had pain continuously since after finishing rads?
My BS office called, gave me an appot. for Monday afternoon. I still can't believe that they called, but it was in response to my call to them this morning. I am sure she will yell at me, several times she has done that, saying that I am over anxious. What am I am supposed to do if I have pain, right? I am getting lab work done tomorrow, but those tumor markers take at least a few days to come back. Maybe, just maybe by Monday, I will know the results of my tumor markers before I see the BS.
I am trying to make myself hard as a rock. I have been walking at lunch and exercising at night, pretty consistently. I know the pain came before the exercising and walking, so unrelated. The only thing different that I had done was flax seeds and I feel that maybe I have too much estrogen and it is attacking my breasts. Sorry about my language, but I just feel like screaming "F......K YOU C.......R!!!! F......K, F........K, F.......K YOU!!!!!! Who wants to go wild and scream with me, as loud as you can........F....K YOU C.....R!!!
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Lovelyface My incision area (from modified radical mastectomy) still gets pain more than one year after surgery. RO says it's the nerves healing back together! I also have hard areas around the incision, even under my arm. I'm guessing that is lymphedema. I saw my PCP today and he's ordering more physical therapy for me and a referral to a obgyn for possible hysterectory. I'm too old to have the BRCA test, but still worry about ovarian cancer. I have three daughters, ages 46, 44, 40. They need to know their risk for this shit. My former co-teacher has been sent home to die of brain cancer. She won't last 6 months, but is just about past being able to understand her situation.
So glad I found this site, just wish I had done so when I was in treatment. You all are such a dear group of women.
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Jan69, sorry to hear about your co-teacher. What do you mean you are too old for the BRCA test? I didn't know they put an age limit on it. My mother had the test done when she was 67 and diagnosed with ovarian cancer. Her MO encouraged her to have the test done for herself and us kids. Tested negative, by the way, but I think there are some other nasty genes they don't know how to test for yet!!
Hugs for all those that are in pain. I don't have any answers...just hoping for a positive resolution for everyone. I am still trying to figure out what my new norm feels like just 2 weeks PFC.0 -
Jan69 - So sorry about your co-teacher. I think we all need to take up Lovelyface's chant. This disease in all its forms steals far too many (and I guess a single loss is too much). The standards for allowing brca are so frustrating; I suppose I was 'lucky' for getting BC so 'young' - but even with my diagnosis, my parents' efforts to get tested weren't covered. We'd like to know what side it comes from for sure, and my Dad already has a lump, which has tested negative through a biopsy. It's a shame that your daughters won't have some heads up unless one of them does develop BC.
Heather - Thanks for sharing. I pretty much had seen the door closing earlier; my BF really doesn't want kids, but I was still holding out for a change of heart or, well, an accident at some point. I agree with Naan - it would have to be sooner than later, but I've been told no sooner than 2 years pfc. So I'm trying to come to grips with a closed door (other than adopting older kids or some other way to become a force in a child's life). At least I have a wonderful nephew who just turned 1.
LNBCA - Great news on the ultrasound. It's always great to know that these treatments actually work. I had chemo after surgery, so it was strictly a 'just in case' approach with no way to know if there were any cells floating around, and if so, if it got them all. I hope it continues to shrink to nothing.
Mags - Happy anniversary, and good news about losing the port. How great that your DH has been such a support for you. But I'm sorry to hear about the divorce. I hope it's at least amicable.
Okay, dinner time. One great thing about chemo was that since my doctor asked me to avoid raw vegetables that couldn't be peeled (to avoid any that might be contaminated), I spent 5 months increasingly lusting after salad, and now I really have come to enjoy it so much that before. Score one for eating healthier!
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StayShiny I guess what I mean about being too old is that my insurance won't cover it and my MO won't order the test because my cancer started when I was 68 and no family history to speak of. I think what I need to do is push my daughters to get tested for BRCA. I'm glad your Mom was tested. Our offspring need to know their risks. Perhaps my new obgyn would be willing to order the test.0
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Maggie - I get my port removed tomorrow in the surgeon's office. Thanks for your post. I'll worry less now. They said the local anesthetic was the most painful part. I figure I can do that. I did ask the nurse if there was ever any screaming, crying or barfing...she said no.
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phgraham - I was pleasantly surprised when they took out my port because there really was no pain, unlike when they put it in (I felt as though it hurt more in the 2 weeks following than my bmx!). You'll do fine tomorrow. Celebrate!
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Just learned that Dr. Susan Love has leukemia. This story is getting old, and sadder each time.
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Lovelyface - I have the exact same thing. My arm/shoulder and lymph node area hurts. I've had shoulder and neck muscle issues before and think this is something similar. It started one morning after I slept on it weird. I think I might need some physio. Right now I'm sitting here with my EMS thing on my shoulders to relax the muscles. Stretches help, too. Oh, and Aleve! A muscle relaxer helped a lot this morning. At first I thought maybe it was lymphedma but I think it's shoulder impingment and the fact I had radiation doesn't help with the already tight pecs. Hang in there...
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Hi Lovelies,
I haven't read back through what I have missed yet. I just wanted to post something before I forgot
I went to the Bonnie Raitt concert last night. First concert sans boobs. When her warm up band, did a drum solo - I thought I'd have a freaking heart attack! Without the cushion on boobs and muscles, that bass drum, nearly did me in. Who knew? Oh, and I almost hit a big, black bear doing 60, on my way home! I have a new found appreciation, for anti-lock brakes.
I'll catch up tomorow!
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Okay, I just decided to give a quick look back at what I missed. While there is a lot of pain and fear, which I can totally appreciate - I also laughed so hard - my wine shot out of my nose. Which my husband really loved!
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OBXK: I love Bonnie Raitt...hope the concert was good. About the bass drum....I get it. I hate that weird feeling. As if your own heart is going to jump right out of your chest. Actually nauseates me when music is way to loud or even the bass being turned all the way up on a stereo.
Lovely: I am 3 years out from BMX and right side ALD. I STILL get sharp pains in my right armpit. Happens when I least expect it and takes my breath away. Luckily it is happening less and less and it only lasts for a few minutes each time. My PS and BS both said that it is just part of the process.....BC, the gift that keeps on giving.
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Navy - that's exactly how I would describe it - when I least expect it, the pain comes and takes my breath away. I think mine is coming from something I eat. Today, the pain is subsdizing, absolutely, lessened quite a bit. Maybe I should just stop eating altogether, honestly! I still feel some lumps and bumps, but I hope they are just glandular tissues.
Does anyone have severe hair loss problems after chemo. My deputy executive director is very sad as she continues to wear the wig after chemo, which she had for BC. She sees my hair browth which is reasonably okay and asks me daily what she should do. Anyone has any advice? She has very short growth, but the hair is very weak and is not growing. She hates wearing the wig especially in the summer. She is very depressed. Please advice. I told her about biotin today, told her to ask her doctor first. Anyone tried anything that works?
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Hi
I usually post on the uk thread but have been following this one each day.
I also have pain and have also been told by BS that it is just part of the after stuff. It is scary for me as the pain is the same as I had when diagnosed. I have been to physio but she has stopped because the heavier exercises cause me lots pain. Some of my pain is caused by neck discs damaged because of terrible posture I have had for years. I was a 36j cup and the pressure and weight caused it.
Anyhow BS referred me to a pain clinic and waited for 4 months but today is my first appt. If I learn any tips for pain control I will pass them on.
Good wishes to you all
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Morning Ladies,
CS? I usually wake up to one of your posts. Where are you? Hope everything is ok.
Lovely, I may have missed it but I think your thyroid biopsy is today, good luck and it will be b9!!
Had to have my bloodwork done last week for my 3 month onc appt coming up in a couple of weeks. Anxiety started the second I left the building. I hate this. I have to pick up my xanax script too and won't get a chance until tomorrow morning.
I'll need to post a pic eventually but I have a window in my tiny little cubicle. My view is the back yard with a pond filled with geese & ducks and a very large wooded area behind it. Yesterday morning a deer and her fawn came out of the wooded area to frolic around the pond! It was absolutely adorable. It's the second time I've seen deer but not the fawn. While I was getting my tea the other day I glanced out the window and there was ground hog right there! I'm so happy to be home!
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Hi..much as I don't want to "join" your group..I'm in!..been reading and getting some laughs..thanks..
I'm 67..caucasion..have 4 children..breast fed them..fairly low fat diet..healthy other than my surprize I found at the end of April...no breast cancer in the family except for my Dad's mom..I was just a kid but don't think they classed any of them triple neg then..she survived a masectomy for over 5 years I know..I remember family saying she was "cured"..she died when I was about 15 from bone cancer..
so I really fit the profile for this cancer..right? LOL..Never the less..Here I am...first chemo wasn't no where near as bad as I dreaded..did get infection in port area..on meds now and feel much better..port was put in on Monday..chemo two days later..the "super glue" covering is still there..so germ was in system already..5 days after tx was when port area started to feel achy..so heads up for those getting port and tx in same week..
I just hope the se of the other 5 tx are no worse than the 1st one was..meds took care of nausea..and was tired for a couple of days..but have the freedom to nap all day if I want to..kudo's to all who work thru chemo....
and on my bio..the tumor measured 2.5 on mamo..ultrasound and mri..but when doc got it out was 1.4 cm..some glitch wouldn't let me do the odd number..so shows 1 cm..
next tx on 6/27..wish me luck...Doris
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Aha..edit button let me fix the size of tumor..I can still do something right!!! LOL..chemo brain ya know...
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good wishes today phgraham...The numbing shot is the worst part...just a needle though. Once numb I was cracking jokes with the surgeon and laughing with him as he took it out and stitched me back up. I really like him and wish that he did recon too!!
Hoping for a great weekend.
Maggie
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Doris: Welcome, you'll make lots of wonderful friends here.
Lovely: Is your friend on hormone therapy?... because I know that aromotose inhibitors definitely can cause hair thinning and weakness. I'm not sure what can be done about it. Maybe biotin, but she should check with her doc first. My sister deals with the same thing, only consolation (such as it is) is that she'll be done the treatment next year.
Jan: Since you were diagnosed post-menopause and there's no family history, I can see that you wouldn't qualify for BRCA testing as the odds of a + result would be extraordinarily small. It is an expensive test and it makes sense that our medical system rationalizes use of service based on evidence-based risk.
Hope everyone has a great day.
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Welcome to all the new ladies.
Lovely... has your co-worker been in touch with the cancer agency there - you never know they may have some advice.... Like its not enough to get over cancer... but all this crap too. I was told that it can take up to a year for our hair to grow back.
Stayshiny... 2 weeks PFC... I am dreaming of that... June 22 last treatment.
Jan69 - heard that about Dr. Susan Love as well... I read her book when I was first dx'd - CANCER SUCKS... and yes, lets take up Lovely's chant as our daily mantra.
I saw Bonnie Raitt many years ago (about 18) at the Royal Albert Hall in London. She opened for Eric Clapton... I had never heard of her until that time... but love her music now.
Met my BS yesterday - surgery before rads for me which means no immediate recon. Reason being is that I am in the high risk category of the cancer returning... so the BS advised that with the surgery he is pretty confident he can remove most of the cancer and then the rads will zap the rest. Surgery likely for beginning of August - only right
boob will go. Any advice anyone?I will go and find some threads here for surgery as well.
Hope you are all having good days with minimal SE's.
Hello to all I missed !
Where are you Cocker ??????
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Tazzy - check out DIEP reconstruction. There are lots of threads on this topic, and plenty of info on the internet. You probably can't do an implant on your MX/radiated side as there is a higher risk of failure. Just a thought...
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Thanks Michelle.... that's good information to have on hand. i will check it out. My BS advised that I wait for about a year before considering recon. Does that sound about normal?
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Tazzy - I was advised to wait six months after rads for DIEP. I think it depends on the surgeon, to be honest. I was scheduled to have DIEP on 7/23 which is just over the six month mark. Of course, that's off the table for now.
But there is still hope for recon if I can get to NED. And I would still want to have DIEP. 0 -
Here's to NED and kicking cancer's butt !
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Ka2nich - we try to laugh often in this thread.
Jan69 - I'm so sorry about your friend. Thank you for the info on Dr. Love, I went to her site to check the news. Just so unfair. BRACA testing is also been very frustrating for me. It's been 2 months and I can't even get the paperwork from the insurance company that I need to file the appeal. I have a Case Manager, and even she is getting ticked off. The good news is because of the screw up, it isn't delaying my decisions on treatment.
Rachelvk - I hear you on the salads. What used to really kill me when I was on chemo, was that the cafeteria at Dana-Farber has a really great salad bar. I used to walk by and growl at it!
Phgraham - "I did ask the nurse if there was ever any screaming, crying or barfing...she said no.". Now that is a perfect reason why I should never be a chemo nurse. I would have looked at you with a big grin and told you, "we tell all the staff never to do that, it really scares the hell out of patients". ;-)
OBXK - glad you had a great time, except for the bear scare. I don't have the problem with the base because I had LX, but I did have one that made me laugh. We went out to hear a band, and every time I clapped I had an odd feeling on the LX side. Took me a few times to figure out, that because it was smaller it was waggling back and forth in the bra cup every time I clapped. I hope the band appreciated that my boob was also
Clapping for them. (my girlfriends had a good laugh when I explained to them why I kept laughing)
Lovely - good luck if your biopsy is today. I second the Biotin, but I also used a hair thickening product when my hair came in. The one I used came from a local source, but I know there is one by Ovation Stem Cell therapy online, and one by Nizoral (?sp) that can be bought in department stores. I think it made a difference.
Linali - thank you, we'll be looking forward to any tips you get.
Heather - glad you have such wonderful scenery to relax you. Add some Xanax to that, and hopefully you'll get through the awful waiting.
DorisMarie - welcome to the group. I think you'll find many of us don't fit the profile demographics of this disease. I'm glad you don't have to
work during tx. I truly believe it made the most positive difference for me. I am always astonished and in awe of the women who work thru tx.
Tazzy - don't know about reconstruction,, but the did tell me to wait at least a year for breast reduction. Like I said before I'm waiting because of Mom, but also because I'm a realist. I want some time to see if the beast stays away. I don't know how it works where you are, but federal law here allows us up to 5 years to have reconstructive work. Practicing my happy dance for you!
Cocker - worried about you and hoping you're okay.0 -
Hey everyone- been catching up on everyones posts. Know several of you are having a rough time and am wishing you a good day.
I didn't have radiation so I was able to have reconstruction(expanders) udring my inital BMX surgery. I think this helped me deal with all the changes.I was able to get my genetic testing done before my inital surgery as well- I think it really depends on the insurance co. as to how many hoops you have to jump through. I lucked out and my surgeons office took care of all of it for me. For those of you thinking about having it done- I had no history of cancer in family and so my surgeon didn't think it was a priority for me other than the ole TN pathology. Of course guess what- +++++++.
thankfully i found out and have already had my hysterectomy. now I can talk to my daughters when they get old enough and let them make decisions for themselves when the time comes.
Take care,
Kelly
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The genetics counselor at Dana Farber handled the BRCA test insurance issue for me. I don't have any BC on either side of my family, although my dad had no female siblings. I was over 60 when I was diagnosed so I didn't think that Anthem BCBS would cover the test (I think under 60 with TN and no history was their published guideline), but they did. They didn't go all the way - I could have paid for additional testing to see if it was a gene of unknown origin. But I let it go when it came back BRCA negative on the basics.
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LUVRV - I still swear we are at two different DF's, lmao. Genetics did nothing to help with my insurance problem.
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