I feel bad........

wrsmith2x

I feel bad........

wrsmith2x

I don't post often but i have been feeling bad the last few months and feel the need for some encouragement.  I have been reading the posts and you guys are very encouraging.  Do you sense a "but" coming on? 

Here's the story.......see below for diagnosis info.  For the last few months I have become OBSSESSED with getting "IT" back.  I have NED but for some reason I feel it inside of me and I am wondering if I am losing it.  The issue is ever since I was dx I have been desperately trying to become more attuned to what my body is telling me.  I never knew I was sick.  I had just lost alot of weight and was feeling great and then BAM....I have cancer.  I know that I was a Stage 1 and node neg but for some reason I am convinced that it is there, lurking.  In the last few months I have developed a dry cough which won't go away and has become increasingly worse.  I feel heaviness in my chest and sometimes gulp for air.  When I walk up a hill I gasp for air.  I have a backache between my should blades that is worse in the morning.  My eyes go hazy and take a long time to focus sometimes.  I have headaches everyday but I wonder if they aren't due to the worry? 

Normally I don't worry about things but if I am truly listening to my body then it is telling me that I am not well.  And I haven't felt well in a long time.

Any ideas?  I started walking everyday again in hopes that it would make me feel better but it hasn't.  In fact, I feel worse.  Next onc. appt is the end of November and I hope that he can shed some insight on these issues.

carolinachick

I would encourage you to get the lung thing checked out.  If you're not able to see your onc, then go to your general practitioner and be sure he's aware of your bc history.  They should be able to take a look and see if there's anything going on.  Only you know your body, and what "normal" feels like to you.

Keep us posted.  Good thoughts are headed your way.

Anonymous

We all have these fears....they are very normal..

To ease your mind, maybe you should call and move your appt closer......the more you worry the worse the wait is going to be....

My oncologist gets after me because I wait too long he says...he said that ANY amiss for two weeks or more should be checked out...

Call and talk to the oncology nurse at minimum and see what she recommends with your symptoms...

Hugs

Jule

concernedsis

wrsmith2x - its great that you are intune with your body but dont beat yourself up that you didnt recognize the cancer - that sneaks up on the best of us. I dont know if you are still on treatment of any kind but if so call your onco and ask if these symptoms can be a side effect of meds. If not, believe it or not,  not everything relates back to cancer.........see your internist or even go to a 1st med place - let them listen to your chest. A dry cough can be anything from allergies, respiratory infection, asthma, gastrointestinal reflux (heartburn) to a million other things. A good listen, maybe an Xray and some bloods should help sort it out. The SOB on walking can be you are out of shape, have asthma and lots of other things. It is very possible the symptoms can be stress related but see a medical doctor 1st - if he cant find a cause try your oncologist and yes appts can be moved up. Never accept stress as a diagnosis till organic causes are ruled out! Best of luck - feel better soon.

AmyIsStrong

Your words really resonated with me as to how I may feel once my active treatment is over. My doctor already told me that no tests are as good an indicator as listening to your body, BUT you have to be careful about not becoming obsessed. So it sounded like a delicate balance to me!

Also, I had lost a lot of weight like you when I found the lump. I think losing the weight and having smaller breasts made the lump easier to detect. In fact, I tell the guys at my gym that my fitness regimen saved my life! (they love hearing that!)  Anyway I had always been totally healthy and then, like you - BAM - i got dx. But the surgeon told me that coming in BEFORE feeling any generalized health symptoms was a great thing, that if you show up with whole-body symptoms, that is a bad indicator.

So I realized right away that all this doesn't add up.They don't want to do follow up testing (other than 2x/year mammo) like scans because they believe that the woman is a better intuitor of what is going on in her body, BUT they don't want you to be consumed with worrying BUT they say if you DO show up when something is wrong, it could be too late.

I just finished chemo, and doing rads now, and will be on Herceptin through March. None of this concerns me YET because i am still being inundated with meds. But I can completely see why you feel this way and am very interested in reading what others have to say because this is concerning to me as well.

Good luck!

Amy

wrsmith2x

Well, I called my Onc. and asked nurse to ask Doctor to refer me to have a chest x-ray.  She called back and said that he wants me to have a CT scan instead.  Why not do the chest x-ray?  Is the CT scan overkill?  They are much more expensive.  Can they really show that much more?  I just want to know!!!!!!!!!!! 

PatriciaPrijatel

Wrsmith:

I am so glad you posted.  Worry is natural after a cancer diagnosis.  And, as others have said, the original diagnosis comes as a complete shock to many of us.  In fact, I felt better than I had in years when I was diagnosed.  Go figure.  I was extremely active and had just taken up jogging.

 A CT scan is more comprehensive than and x-ray--it is actually a combination of x-rays.  And it can find problems the x-ray might miss.  If you can afford it, I would go that route.  If you can't afford it, check with your local Komen group and see if there is any medical assistance available to you.

 The NIH's Medline has an explanation of CT scans for the chest:

http://www.nlm.nih.gov/MEDLINEPLUS/ency/article/003788.htm 

I am pleased you called your doc and you're getting on this.  If it is a problem, getting it early is good.

I do agree, though, that this could be a variety of things--stress, allergies, muscular problems.  I had a cough this winter and worried and worried.  I got an x-ray and things were fine.  What's better, though, is that the cough went away.

One thing, though:  Make sure the doc gives you a complete report on the test.  And ask her if she reviewed it herself (rather than depending on an overworked pathologist.)

Keep us posted.  And try to do something to relax--yoga, meditation, prayer, a massage, acupuncture--while you are waiting for the test.

Take care. 

Pat

www.hormonenegative.blogspot.com 

holligoog

yes, a CT is much more telling than a chest x-ray. Your Onc is on target. TNBC is most likely to have distant recurrance in the first 3 years after diagnosis/treatment.

I recently finished treatment and was speaking to my Onc last week becasue I feel like I am swirling around in a toliet bowl desperately trying to not go down the drain. I had a similar diagnosis as you and now that I am done with treatment I feel like nothing is being done to keep 'IT' from coming back. No pill to take for 5 years, etc. I have been very tearful lately and consumed with worry. My Onc says that this is very common especially with TNBC becasue of the reality that it likes to crop up somewhere else. She said it's kind of a Post Tramatic Stress Syndrome reaction and she recommended that I start taking an anti-depresant and see a counselor to deal with "re-entry" in to my new normal.

People ask if I am "cured". Well, I don't have cancer in my breast anymore but I will always have to live with the fact that IT will try to come back. So "cured"? I say "under control for now".

You will be in my thoughts & prayers for a clear CT.

I live in NC also - Greensboro. Maybe we could connect. Private Message me.

 Holli

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot.

-Eleanor Roosevelt

carolinachick

Holli,

I, too, have been suffering from a huge case of the "worries" since I finished treatment in July.  I want to trust my body, but that's so hard to do since it failed me before.  And the chance of recurrence for TN's is scary, even though my tumor was small.  I don't want to be a hypochondriac, but I don't want to overlook something that might need medical attention.  It seems like a fine line to walk. 

I live right outside of Charlotte, just over the state line, and would love to get together with any Carolina ladies.

Jennifer

Melissa1971

I am glad I found this thread! I am going in tomorrow for my first post chemo appt. I am so scared.

I finished radiation in mid-August and feel ok. My life has gotten back to "normal" and I am so happy. I always felt lucky in life; great marriage, job I enjoy, healthy children.....and then BAM cancer! I thought for sure the lum I felt was going to be benign. I had felt things in the past, had  a mammogram and everything was fine. I was in total shock (still am on some level). Those first few weeks after dx were hell. I am so scared I will get mets. I try not to think about it and I fill my days w/ activities and people I enjoy. I am planning vacations and house related projects and long term plans for my career. I can't imagine hearing those words (it was malignant) again. I want to be here to raise my children and grow old w/ my husband. 

Debonthelake

Hi, everyone,

I'm listening to all of you and truly understanding.  I'm feeling really good right now.  I have an occasional cough but I always have had I think it's allergies.  My energy level is pretty good.  I need about 9 hours of sleep to feel truly rested and I cann't tolerate 10 hour work days the way I used to but other than that I've been doing well.  Do I worry?  Well, I suppose that I do.  Like you say the follow-up seems sort of well elusive.  But, mostly I'm moving on just choosing to live each day the best that I can and leave the rest in the Lords hands.  Worrying seems like a waste of whatever life and living I may have left.  God bless us, each and everyone.

julibug63

Deb,

You nailed it Sister! Live each day to its fullest and try to find the joy and the good in all things! I stumbled upon this thread while looking for some info on mets for TN's. I just had a bone scan that lit up a spot on my rib. I am waiting to see my Onc on Wed and suprisingly I am NOT freaking out! The Lord will see me through this (if it turns out to be mets) just like He did the first time. I am just so blessed that my first round of BC led me to a firm relationship with Christ, and I have been able to use my first hand knowledge of cancer to calm and counsel others. The wierd thing is...I always felt that there would be a "second time" not an obsessed worry kind of a feeling, just a feeling that I would at some point go through this again. Has anyone else had that impression? My best to you all in your journeys!

 Juli ~~~~ Phil 4:13

tibet

Juli

Did you have sever rib pain? Usually it is unusual for TN to have bone mets. That's what I heard....Did you have on your original path any vascular invasion? Usually bone mets come from vascular invasion via blood vessels.

carolinachick

I also have the feeling that I will go through this again, and am trying not to dwell on it.  I want to live life to the fullest each day - some days are better than others, and some days are riddled more with worry.  But life is terminal regardless, and even those with cancer can have something else hit them at any time.

I haven't heard that bone mets are unusual for TN's.  My onc said that if my bc spread it would go to my bones, liver, lungs or brain. 

julibug63

newalex,

I went to my primary care Dr because I was having rib pain, I accutally thought I might have broken one due to rads making my ribs brittle ( I had heard that that was possible) and I have had an annoying cough for most of the summer. My Sis had lung cancer and I am a former smoker so anything lung related freaks me out. My primary wanted to do the scan and chest x-rays due to my history, that is when they found the possible mets right where my discomfort is/was (surprise, surpise it doesn't hurt anymore) 

carolinachick,

I have heard the same thing, that TN usually WILL have distant mets and to the bones, lung or brain. BTW your Dx is similar to mine exept they took 30 more nodes on me than you! That still blows my mind...my lymph nodes must have been very tiny!

Debonthelake

Juli bug.  Keep us posted.  You will be in my prayers.  I simply refuse to let myself go down that path.  Like you say life is terminal, what will be will be.

carolinachick

Julibug - I'm so sorry to hear about the possible mets.  Please keep us posted and know that you'll be in my prayers tomorrow!  We do have a similar diagnosis, but wow, you had a lot of lymph nodes taken.  I was fortunate to have had the sentinel node biopsy, so they only took four. 

Hugs to you all.  We will all get through whatever is given to us, with faith and the support of those around us.  I am so thankful that I have you all to listen to my worries and fears.

lesamariekey

HI, Sorry you feel bad. I know the feeling all to well. I have been depressed for about 3 months now. Since I was DX, with stage 3b breast cancer. I also had a cough and my chest hurt( I started chemo in August.) I had to ask my Dr. to do a CT/scan and MRI. Thank  GOD because I have mets in my lungs. Had I not have ask for those scans I would not know that I have NED. Hopefully you will not but be your own ADVOCATE. I will say a prayer for you and the rest of our family. Until we meet again.........Lesa.....aka...ALABAMA.....Since I have METS my Dr. has not changed my treatment plan......I am trying to get referred to Birmingham. (It is closer.) And another Dr. one who can show some compassion, and empathy...Your new friend

lesamariekey

You will do better with aCT/Scan. My chest x-ray showed nothing.It looked fine. But when I did the CT/scan it showed that I had mets in my lungs.Not one or two but three spots. Yes it is scary. Really scary.....I have to let go and let god.......Easier said then done. I'll be praying for us all......Alabama    I will be getting a second opinion..........It is always best to do that. I have had to do that a-lot lately.  Talk to you later........

julibug63

Deb and Carolina,

I go see my wonderful Oncologist tommorrow afternoon. I am sure he won't make a call on if this is mets until he orders more tests...I think I will push for a PET scan and maybe a CT because good bad or whatever...I just hate the guessing game. Thank you for your kind thoughts and prayers, I will post after I talk to the Doc.

 Blessings!

Juli

guitarGrl

wrsmith - so sorry to read about your symptoms - if I remember correctly (can't blame it on chemo brain anymore - just space cadet-ness) we went through treatment at the same time.

I also worry about every little headache or stomach pain - I think it's inevitable with TNBC, but it does seem like this time you had good reason to worry. I hope the cat scan shows nothing - you did the absolutely best thing rescheduling your appointment. 

susan

tibet

wrsmith

Have you done the CT scan? Hope it went well and pls update us.

MsBliss

I think you should try to push your follow up appointment up.  It is important to run these symptoms by your doctor.  You could have a mild case of bronchitis, you could have developed a new allergy--whatever it is, it should be treated.

Now, given that you have some very normal and deep seated fears, as we all do, I am glad you are listening to your body. Don't dismiss your fears but learn to discriminate between irrational worry and the intuitive knowledge you have accumulated from being the owner of that body for so many years.

9 months before I was diagnosed, I had an odd dream.  In my dream I was sitting across from an Asian man who was dressed in a white lab coat.  He pointed his finger at me and looked straight into my eyes and said:  "You have TWO cancers."  I took it to mean that I had some emotional or psychological issues to work out.  As it turned out, I had two cancers, one IDC, the other DCIS.  I was so startled by that dream, but I dismissed it.  I wish I hadn't.  I was overdue for all my preventative exams, yet I didn't make a move to listen to the message.

Your fears won't be as overwhelming if you participate in your health.  Add to your healing by learning to be more proactive in your "new normal" health.  Make healthy lifestyle changes, look into evidenced based supplements, learn to calm your mind through meditation or a really enjoyable activity, go to a gym or take your dog for long walks, or get a dog, then add to the love!

InspiredbyDolce

An earlier post on this page (in 2009) had this information, which could cause a lot of panic for TNBC patients, so I want to add information to this post, to offer information to what someone else post earlier ::: that TN usually WILL have distant mets and to the bones, lung or brain.

I feel the way that is worded is going to cause a big panic.  That is not true at face value.  I think what the poster meant to say was that "OF those who have a recurrence", it is usually a distant met.  Mets to bones is not typical for TNBC.  Also, a lot of studies indicate a poor prognosis, because TNBC is usually found late, which lowers the statistics overall.  But for the majority of TNBC, there will not be a recurrence.  Please try to think positive and remember that. 

More information on what I mentioned can be found online at: tnbcfoundation.org