Calling all TNs

ALHusband

PET scan this past Friday ordered by new Onc. Results back. ALL CLEAR!!!! Praise God!

jenjenl

AL-that's awesome so happy for you guys.

Allydp

AL - fantastic news! 

I have sort of a silly question. I finished chemo in July and had a BMX with TE's 7 weeks ago. Just in the last week I've been having pressure/slight pain exactly where my tumor used to be. I had a complete response to chemo, so there was no cancer found at BMX. I also just had a clear abdomen/pelvis/chest CT a couple weeks ago. I'm trying to be rational here, and truthfully I don't think it's anything to be concerned about, but the fact that these weird sensations are right where my tumor was is a little unsettling. Do you think this is just a coincidence and it's simply healing from the BMX? Or should I put a call into my BS? I've called with quite a few pains lately, so I really hate to call again with something like this. Any thoughts are appreciated, thanks.

tnbcRuth

The brain MRI and body CT scan came back normal and all my blood work is still normal. Anybody have any idea why my shin bones are hot and the neuropathy burns and I'm tired beyond tired for the last 10 months? Many doctors later and there's still no diagnosis.

How much longer can I sit on the sofa and wonder what's making me feel so bad? !!!!

I read something about an auto immune response the body initiates to eliminate cancer cells. Possibility? 

Tobycc

newbie here.  Overwhelmed by the reading. First thing I need to do is check with my MO at next infusion to clarify stage, etc

I had a lumpectomy 9/6. BS planned to place balloon for 5 rads.  But, one lymph node was positive

Doing 4 rounds of chemo then radiation.  Interesting, I just don't let my mind go to "what if it comes back?" 

Maybe just stupid listening to docs say, margins clear, "got it all". Prognosis good

I had quadruple bypass in 2012, ruling out the adriamyacin (sp) chemo as it is toxic to heart. Prior to this in July had laproscopic hysterectomy ......very very beginning of endometrial cancer.  Had not penetrated wall, ovaries, tubes, etc. all taken out and clear.  Am I not asking the right questions?  Is this cancer way way worse than the others?  

Confused and now scared

Second infusion 17th. Getting wig styled Saturday.  I am 53, married, mom of fraternal twins in college 

Hugs

ALHusband

Allydp my wife, to this day, speaks of weird sensations and sometimes "shooting pains" in her breast(s) on occasion. She has asked both the surgeon who did her mastectomy and the plastic surgeon who did her reconstruction about it. Both said she may have this forever. Earlier on, she was told it's "nerves coming back online after surgery". They're less frequent now and certainly tolerable for her, but she still gets occasional "sensations" here and there.

Radical2Squared

Toby,

Please don't panic! There are certain aspects of triple negative bc that do make it worse than others, but it's not all bad (well, any cancer is bad.)

Triple neg bc is a tricky little devil that enjoys migrating and recurring a little more than other cancers in the first 5 years or so. Studies are showing other bc to be worrisome for 10 years. Also, since trip neg has no hormone receptors, you don't need to worry about female hormone therapies etc. Encouraging it to come back!

Mostly, it's like any other illness...it's in your attitude. I figure, as long as I go for my regular doc visits and let them know about any PERSISTENT abnormal pain, I'm not worrying about cancer coming back!

BanR

hi!!!!!

Was out of touch for sometime and so happy to read all the posts.

Last year Oct I got my surgery done, so while I complete 1 year post surgery..there is a new problem which has come up.

On and off I get a very very very mild headache at certain points and it goes away on its own. Doesnot look sinusitis but if it persists for 2 more weeks then maybe a CT Scan will be asked for.

Anybody heard of a similar problem.

Nettie1964

tnbcRuth,

I feel you!  Even though you are further out than me, I have the same issues!!  But I'm not even being diagnosed with Neuropathy!  Just get this pain in my legs from my knees down!

Also, for me, my thyroid is an issue but can't find a local doctor to take me serious about needing more in depth testing, I've been on 100 mcg of Synthroid for 10 years or more!!!  After chemo, I'm sure this needs to be adjusted but as of today, haven't found a doctor to listen!  Anyway, thyroid issues can make you tired and make your bones hurt!

I take Claritin daily because of allergies and there are a lot of women on these boards that say it helps with bone pain! If you aren't taking it, maybe you could ask if it would be ok to try!

Also, although I haven't had scans since treatment ended, all scans during treatment were clear and bloodwork is still good, but after a day at work, most days I head straight home for a nap!  And I take Multi Vit, Vit D3, Calcium, and Garlic!

Hoping you find answers soon!

Luvmydobies

BanR, welcome back! I've always had headaches off and on for as long as I can remember.  Many many things can cause them such as allergies, weather changes, stress/tension, anxiety, dental issues, ear issues, hormone changes, too much or too little caffeine, not enough water, medications, etc. I've heard as long as they don't persist or get progressively worse then it's probably just an ordinary headache. The weird thing for me was during chemo I never had a headache, but a few weeks after they started again. I drank a lot of water during treatment then backed off a little and started drinking cokes again. I have to have a small one in the morning or I'll get a horrible headache. Then I drink mostly water the rest of the day. Anyway try not to worry and keep us posted.

redheeledwomen

BanR- For the past week I've had a headache every single day.  It just started happening this past Monday.  My DH thinks I'm going through withdrawal or its a symptom from the chemo.  My last chemo was on 9/23.  I am monitoring the situation.  I drink plenty of water per day (64oz) and its still there.  I started taking Ibuprofen (2 tabs) a day and that gets rid of the headache.  In fact it feels like a tension headache.  I'm trying not to worry about it.  I will mention it to my ONC on Monday to see if he has any suggestions and then monitor it from there.  I also meet with my MO on Thursday.  So, if it still persist I will push for some sort of testing/scan whatever.

Meadow

Ally, I have a spot on my affected side exactly where the first biopsy was, it is my sore spot. And like you, BMX and complete response to chemo. I have wondered about why it is sore there, but I do not believe it is a recurrance. Hope that helps.

Meadow

Brookezine, I am sorry you are going thru this. Cancer sucks. Are you going to have another round of chemo? What does your Onc say is next for you?

 Eating healthy and a positive mind can help so much in our fight, so keep it up. I hope you get in a clinical trial, keep us posted. Meadow

Stupidboob

Results in from Pet Scan.........thankful and happy but a little scared still.  There is nothing in the lungs.....yay (thank you Lord) there is some uptake in both sides of the neck lymph nodes.  Right now we are thinking infection or inflammation since it is in both sides.   I finally convinced them to give me an antibiotic.   I sure hope that is all it is and I will repeat the scan in 3 months.   If I don't start feeling better with this antibiotic, then I am to call her and we will proceed from there.   I am still not breathing well.......would appreciate you keeping those prayers coming.    Thank you all and God Bless!!!

Luvmydobies

Stupidboob, so glad your lungs are clear! Have you tried any type of inhaler to maybe help you breathe easier? My asthma acts up sometimes during this time of the year. It's also time for all the respiratory ailments like colds to kick up. My hubby had a bad chest cold last week and still hasn't completely recovered. They gave him antibiotics, hydrocodone cough medicine and prednizone but most of these things are viral so they tend to linger. Hoping you're just dealing with something like that or allergies. Prayers and HUGS for you! Praise God for the clear lungs! I love your username by the way! 

Tobycc

thank you Radical!!!

tnbcRuth

thank you Nettie ! I will try the claritin and post it's effectiveness.

Stupidboob

Luvmydobies thank you so much...........:)

I have an inhaler but I am a major medicine phob so I have not tried it yet.  I know stupid.   I will though........when they nurse (NP) prescribed it for me she did not tell me how to use it, so I had to read the pamphlet and I read about the bronchial spasm (I think that is what it was) and it could be deadly.....well it stopped me in my tracks and I have to work my way up.....I hate being this way, but been this way for years.  You would think after all the chemo and crap, I would not fear any meds............but I STILL DO........:(  The NP thinks I have allergic asthma but the oncologist did not agree and so we waited until after the scan...now we have to figure it out.  My primary is out on maternity leave and I will be so glad when she gets back.  I do think though that I might just go see a pulmonary specialist though since so many lung issues are in my family. 

I hope your hubby is better soon.

BanR

thanks for the reply redheel.. even i am increasing my water intake

also luvmy, stupidboobs..in my case too, the possibility of congestion/cold or allergy is strong. In your scan stupidboob, the inflammation could be because of that.

hugs and prayers for all..

LydiaHouse

I find that I hesitate to tell my story because I don't want to cause anyone more fear.  But,  I suppose it's better to err on the side of education than not.   My TN cancer initially presented with pain in September last year.  I went to the doctor in early October and she did a physical all the while telling me that breast cancer doesn't first present with pain. She couldn't feel anything and told me to get my regular mammogram.   By the time of the mammogram ín late November my tumor was 5cm.  I get that this stuff grows fast, but geez.  My tumor was almost directly behind the nipple and deep.  On the other hand, I still have uncomfortable pain that feels similar to that original tumor pain in both reconstructed sides and my doctor just assured me at my 3 month check up that all was fine.   I guess the reality is that any pain could be a problem cropping up, but I chose to think of pain as my friend now,  a warning that I need to pay attention,  but not a reason to panic. 

LydiaHouse

I find that I hesitate to tell my story because I don't want to cause anyone more fear.  But,  I suppose it's better to err on the side of education than not.   My TN cancer initially presented with pain in September last year.  I went to the doctor in early October and she did a physical all the while telling me that breast cancer doesn't first present with pain. She couldn't feel anything and told me to get my regular mammogram.   By the time of the mammogram ín late November my tumor was 5cm.  I get that this stuff grows fast, but geez.  My tumor was almost directly behind the nipple and deep.  On the other hand, I still have uncomfortable pain that feels similar to that original tumor pain in both reconstructed sides and my doctor just assured me at my 3 month check up that all was fine.   I guess the reality is that any pain could be a problem cropping up, but I chose to think of pain as my friend now,  a warning that I need to pay attention,  but not a reason to panic. 

LydiaHouse

Im lying here having a middle of the night anxiety attack.  Ive just had my 3 month check up and I'm so frustrated I could scream.  I have minor neuropathy in my fingers and toes.  I deal with money at work and I can't handle the cash well,  but my oncologist thinks it's carpel tunnel that just coincidentally started during chemo and affected my toes too????. I have pain on my ribs still, but he says it's still just surgical stuff from January mastectomies.  I have pain similar to the initial tumor pain on both sides.  Every headache scares me,  but I've always had headaches, so how dumb is that?   .. I'm questioning the fact that they only tested the sentinel node, which was negative,  but they didn't look any further,  just in case. I am BRCA 1 positive, so Im absolutely positive I did the right thing with the double mastectomies.  At the 3 month checkup the doctor just checked my lymph nodes and the scars.   Its very very difficult to find that they won't do blood work or scans or something else to look for tumors.   I worked on ambulances for several years so I have a bit of medical experience and I should be able to get my head around this,   but my sanity still feels a bit shaky at times.

Before this cancer I considered myself a thoughtful, intelligent, sane person.   I was not an alarmist by any means nor did i tolerate drama in my life.  I was concerned about others who appeared to be hypochondriacs.  Just when I thought I'd be shaking off the last year of pain surgery and chemo,  I find myself doubting everything and feeling like the doctor isn't giving me all the facts.   So, maybe there is even a touch of paranoia,   I think this must be some sort of psychological phase, maybe a sense of traveling the road alone, now that I'm not talking to docs and nurses every week.   At least the hair is growing back and I'm not so darn cold at night. ...sigh.  My only daughter just went in for her genetic test, age 26, and I'm nervous about the results.  My 24 year old son won't go get tested and he has kids of his own already.   Why doesn't he get that the genetics are so important to his family? Oh yes, and three weeks before the cancer diagnosis I was diagnosed with celiac spru.  The very worst part of this psychological experience has to do with the experience i had caring for my mother as she died from beast cancer just 3 years ago.  It was her second round of beast cancer but no one tested her for BRCA i think because of her age.  If only I'd known then what i know now.  Thanks for listening. 

Luvmydobies

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! 

Radical2Squared

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!"

brookezine

How well do tumor markers work to check recurrence?

Meadow

Brookezine, My Onc doesnt put a lot of weight on them, have you had a report?

Meadow

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.

Tobycc

well said Meadow, needed rhat

Stupidboob

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.

Nettie1964

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.