Calling all TNs

Shopgal2

mike glad your wife is ok. Curly sending prayers to you.

I saw my ro Tuesday for my 6mo post rad follow up. I asked about my rib pain which had turned into an intense stabbing and it hurt when I took a breath or coughed. The nurse practitioner working with my ro said it could be Costocondritis which is inflammation of the cartilage that joins the ribs to the breastbone which sometimes occurs in pts that had rads. My ro wanted an X-ray to rule out bone fractures and my nurse practitioner wanted a bone scan to rule out mets. That scared the crap outa me I went for the X-ray first and thankfully no fractures or sign of cancer. So they both said it def was costocondritis so no bone scan for me. What sucks is it's just gotta ease up with anti inflammatory meds and rest. But no cancer. After ending treatment this year and my mom passing in aug I just need a break. What really freaked me is that I am taking a big trip to Europe in 2 weeks to Ireland and England that I planned with my family in feb when I was still in rads. It is going to be my I beat cancer trip. I've never been overseas and was looking forward to getting my first stamp in my passport. So thankful that I can go now.

Cathy my mo is really laid back also with aftercare. I felt lost at my 3 mo checkup and at my 6 mo I got a little more feedback from him because I had just had my mamo which found new calcifications and fibrosis. But he didn't draw bloods at 6 mo. When I saw my ro this week she was puzzled that I haven't had tumor markers drawn this year after chemo.and wrote me a script for bloods for when I get back from my trip. I guess some docs are more laid back and don't order a lot of tests. I admit when the word bone scan was mentioned by my ro I freaked big time.

Batesburg

So pleased to hear good news, Mike, about your wife. Huge blessings to you both this weekend and beyond!

Shopgal- I still have some rib pain along my left side- doesn't hurt when I cough or take a deep breath but hurts when I stretch and sometimes when I lay on that side. It has gotten much better over these past few weeks but frankly I can tell it is going to take some time. I had 30 rounds of radiation, double mastectomy and ALDN due to two positive lymph nodes- so, I am not surprised that I have such major tightness and some pain along that side. I have read that radiation and mastectomy (and even lumpectomy) can put you at increased risk for costochondritis.

Anyone else here had experience with "benign" rib pain? I understand it is very common.

So glad Shopgal, that yours came out to nothing. Keep on those anti-inflammatories and applying heat has really helped me as well.

Janet

MomMom

Hello you wonderful supportive ladies & gentlemen. Al - so very happy for you & your lovely wife (she's gotta be-:).

I haven't posted in ages, trying to wean myself off. But had to respond to your question Batesburg. Yes! Rib pain is fairly common for those who have had rads. I had a bone scan in May - ordered by my BS - just to be sure not mets. As you can see from my signature, I finished rads two years ago. I started having some lower rib pain on my bc side when I moved or stretched in a certain way. It was very intermittent. I also noticed that lower rib area was somewhat fuller looking than the other side (I'm 5 2 1/2" & 115 lbs. so you can see differences very easily). Told that this intermittent lower rib pain & slightly fuller appearance is fairly common in those who've had rads. Still talk to your doctor about it and go with whatever s/he says to do.

I've had several scares - benign breast biopsy - bone scan mentioned above - 2 skin biopsies for red spot that appeared within the radiated field out of nowhere & last week an MRI on lower spine. That turned out to be inflammation between lower 2 vertabrae, a benign cyst & osteoarthritis. Thankful for regular old age stuff!! None of it kept me down - still exercising daily & loving life.

breastcancerhusband

Hi All

Been a long time since my last post!

Just a quick recap for anyone, my wife was diagnosed with TNBC in Oct 2014 while 15 weeks pregnant. She has surgery right away, then chemo (FEC and three round of Taxol) stopped chemo to give birth and then straight back on to Taxol. She is now two since since diagnosis, and touch wood so far so good. Our baby boy, is now 18months old and is a picture of health. Lively, totally mental and into everything, and completely gorgeous - but i wouldn't have it any other way.

My wife is due to have her other breast removed in December and the reconstruction. A double MX could not be done at the time since she was pregnant and the risk of blood loss could have affected the baby.

I've not had the time to post I guess because life has moved on. The kids take over and of course work takes over! I've been shifting my medical research attention to breast cancer, of course TNBC in particular.

We do get scared of it coming back. Every ache or cough causes some concern. My wife had a cough earlier during the year and I can honestly say I have never been so happy to catch a cough! Although I was rather upset when she kicked me out of bed for coughing too much!

But like I said my darling wife is two years out and so far so good.

Anyway, I hope all of you are as well as can be. For those going through this right now, all i can say is there is light at the end of the tunnel and life does move on. It certainly changes, but does move on. And remember don't believe the rubbish online. Most women survive TNBC!

If any of the other husbands, boyfriends, partners etc want to get in touch plase feel free to do so.

Love to you of all - each and everyone of you are so brave. And I will never forget some of the extremely kind words that helped to stop me falling apart when my wife was diagnosed.

Tom

xxxxx

breastcancerhusband

Mike

Just read the message about your wife. I was about to say I will go down now to the chapel at work and say a prayer for you both. Then read down and saw she is okay.

I'll still go and say a prayer for you both anyway!

Great that all is fine!

Big transatlantic man-hug!

Meadow

BC husband, so glad you popped in to say hello and update us on the family. Your words made me smile, on my face and in my heart! I was thinking about you and your family the other day, and wondering how things were for you all. Thank you for focusing your research on TNBC. Research saves lives! Hugs to you and the family from your "family" across the pond!

Cathytoo

breastcancerhusband...Thanks so much, Tom, for checking in and your kind words. So happy all is well with your family.

Curlyq1974

Just when I think the ride has come to the end... oh no, here comes a cork screw!! So, the pathology is back, it didn't show anything, but it stated that the sample was inadequate to rule out cancer. The radiologist had a very, very hard time penetrating the mass and getting a good sample. Each time she was like, oh that wasn't very good. I asked her to do a 4th try to attempt to get a good sample. Grrr.... on the bright side... the cells she did remove did not show any cancer.... so frustrating. I told the doctor, I just want it out... take it out. She was worried about another scar... ahahahahahahahahaha - that is funny to me! Scar, hell, I'll take a thousand scars to be cancer free!!! And now I have to wait another week to get seen, get a history and physical so we can schedule surgery.... Blah!!!

BanR

Happy to hear the news Alhusband ( Mike)!! relieved to hear Curly's news too...we will take it as benign for now!

Tiffany, glad to hear from u! Fighter posted in another group a few days ago.. happy to see her too!!

my Mri showed a 1cm mass and a biospy mammo and ultrasound scheduled for this friday... keeping my fingers crossed.

every time i try to forget the disease and move ahead, something or the other happens which brings me back to square one!! Its become an annual thing now!

simplelife4real

BanR and Curlyq, I'm sorry that both of you are having to deal with lumps. I hope they both turn out to be benign. Please keep us posted. Wishing you both the best.

Meadow

Curly, I cracked a smirky smile too when I read the comment about another scar....golly!

BanR, in your pocket for the test and results.

Cathytoo

I really don't want to post anything negative, but I'm curious. This Friday will be my first cancerversary. With the change in weather I'm feeling some aches and pains. Normally, I would think nothing of this. But, in the back of my mind, my thoughts go to bone mets. Is this thinking part of our new normal...and if so....when does it ever stop?

Batesburg

Hi Cathytoo

I seem to have many more aches and pains since finishing treatment. It is difficult to not focus on anything new. A good way I try to get through it is to relax when I feel them and let them "carry on" through my body trusting they are just part of my new normal. I wasn't so successful a few weeks ago and what initially started out as a simple side muscle pull that has since subsided, I now have extreme tightness and pain in my scapula that I think is a result of guarding/fear/tensing my side so much and not being able to think of anything else!!!

Remember the "truths" in your health, that you got superb treatment and that you are on your way to total healing (that can take up to an additional year!)

Janet

TifJ

Cathytoo, the fear does subside some with time. I remember feeling the same way, terrified of every ache and pain, for about 3 years. I had a couple of bone scans and numerous x-rays during my first 2 years after because I was positive I had bone mets! Now at 6 years after I begin to think of other things first. Did I pull a muscle, am I getting a cold? I have lots of aches and pains, but I am also 51 years old and don't exercise like I should, so that's to be expected. I do self exam my one remaining breast probably a little too often! My husband tells me sometimes to quit molesting myself! Yes, the fear is still there, but not in the forefront of my mind. It does get better.

Tiffany

Good to see you BanR- hope your tests are completely benign!

Hi Meadow!

Dizzy222

Hey I don't pop in here nearly as much as I should. But, I am here to tell you I just reached 5 years NED. It's been a journey. Fear, more fear and if you can believe it even more fear than that!! But, it gets better all the time. I get better all the time. 5 years out and I don't even resemble the person I once was. I am for the most part loving who I've become. Glad I'm alive to see it. Hang in there.

Cathytoo

Dizzy222....so glad you popped in to give us your good news. Keep going strong.

VLH

Thank you for the encouragement, Dizzy222. I had my first AC treatment Tuesday and the only patient I met was a lovely young mother who'd been diagnosed with high grade, Stage I TNBC, which metastasized to her lung, liver and brain after 3 years. My heart broke for her, even as her battle forced me to face my own fears. It's good to hear wonderful news to balance the sad.

Lyn

Meadow

Cathy, Congratulations on the one year Cancerversary! SO very happy for you. Can you believe it has been a year? So happy!

Dizzy, Congrats on the big 5 years! Truly a milestone. Hugs to you!

Meadow

"Waving"!!!Tiffany, and all of you!

Allydp

AL - so very happy to hear your wife's PET was all clear. I hope you get to the root of her symptoms and she finds relief soon.

Cathy - congrats on your first cancerversary!

Dizzy - 5 years!!! Huzzah!!!

Curly - seriously...another scar?! As Meadow, I also half smirked, but also half swore out loud at the computer. Like you give a rat's patoot at this point. Just get it out and give you the all clear, thank you very much! I hope this process goes quickly and you get that all clear asap! Sending you tons of hugs and good thoughts. xo

BanR - so sorry you're also having a scare. In your pocket. Please keep us posted. xo

So I'm not quite sure if I'm having a scare of not. About 4-5 months ago, I started to have occasional pain in my left hip (cancer side). I had just gone back to work 3 days a week (desk job) and figured it was all the sitting. With my new schedule, I was eating less and lost about 10 pounds. Wohoo right? Well, fast forward to today and I'm now down 25 pounds for absolutely no reason other than I NEVER have an appetite. I have to force myself to eat and even then I take a few bites and it's just not appetizing. And the hip pain is daily and nightly at this point...but oddly enough my right hip hurts once in a while now too. The old me would have freaked out months ago, demanding scans, but I've been pretty chill about it all. I had a physical a couple months ago with bloodwork and my thyroid and labs were great...other than borderline high cholesterol. I'm hypothyroid, so my synthroid dosage is good and that's not the issue. I've been under a lot of stress, and and I'm definitely the opposite of a stress eater. So I keep attributing the weight loss to that. I would think if it was triple negative mets, the pain would be intolerable by now, or I'd be showing other signs of something. My next follow up is early November. I'll be curious what they want to do. As for now, I take solace when the other hip hurts too lol. Hopefully this is just another new normal, post chemo, menopause gift...

BanR

Stuck between protocols and processes!

have a query.

1>once a suspicious mass is established in the MRI what is the immediate next step?

2> How frequently can a mammogram be done ( per year)?

3> Is this the nation wide/ world wide protocol that without mammo, an ultrasound cannot be performed. Also, the sequence has to be, first mammo then ultrasound. Is the sequence so important, that if ultrasound needs to happen first, followed by mammo, the entire appointment stands cancelled?

Your experience on this please!!

The fact that I have a history of cancer and now living with a suspicious mass should make my case urgent anyway. On the contrary I am having to face all these. Absolutely disappointed with the service, suddenly feel like a customer and not like a patient.

Anonymous

hi all, i'm new to this thread. i've recently had a right breast mastectomy about 3 weeks ago and my tumor biopsy resulted in a stage llB, nuclear grade 3 histopath findings. My hormonal assays were 5% ER+, 3%PR+, HER2 negative. From these results, shall i consider my case a Triple Negative Breast Cancer? My ER/PR are both very low but still positives. This somewhat confuses me. What treatment should i expect? Chemo or Hormonal therapy?

If there's anyobody here with the same or similar case as mine, may i please know what treatment was given you and what should i expect in the days ahead.

Thanks for letting me post here. God bless us all and take care.

gmmiph

BanR

gmm, your er pr is mildly positive. You are triple negative in that case. Hormonal therapy is not for you since in your case the risks of hormonal therapy will outweigh its benefits

breastcancerhusband

Hi BanR

I can only comment on the UK NHS guidelines, but generally the checkup/follow-up procedure is 1-2 mammograms a year. I'm not aware there is a limit though on how many mammograms you can have in a year. There is no need to have a mammo before ultrasound. In younger patients mammograms are actually not that useful anyway due to the denseness of younger breast tissue and often if there is any suspect masses from physical examination, ultrasound will be used first anyway since it is faster and cheaper.

I would have thought if a suspicious mass has been seen with MRI, both mammo and ultrasound (probably with biopsy) would be done immediatley, but the order of this doesn't matter.

I hope you can have the appropiate scans done quickly and fingers crossed it turns out to be nothing.

Hugs and prayers

Tom

x

LifeAloft

Allydp, hi!! Sending you positive thoughts and hugs!

BanR, sorry I can't help with any info, I'm just finished with treatment myself. Hope things get sorted out and it's benign!! Thinking of you.

gmmiph, I've been treated triple neg, original biopsy was negative and my surgical pathology showed very weak ER+, 2%, and my MO is actually considering a trial of Tamoxifen, I see her in Nov and will know more. I had neoadjuvant chemo and a lumpectomy.

Hugs to all.

Anonymous

hi banr & lifealoft,

thank you for your prompt replies to my query. this community is really a lot of help to those suffering from bc as it gives hope, encouragement, knowledge and timely advice to the many suffering and confused cancer patients around the world.

it is clear to me now that i am to be considered as a tnbc case as both of you have similar cases as mine. the only difference is that you both underwent lumpectomy while mine was outright mastectomy thru frozen section procedure.

i will be having my lab tests this week, blood, echogram, bone & ct scans before i go back to my MO to determine what kind of therapy and drugs i would use although she said during my previous checkup that i am likely to undergo chemo.

banr, sorry to hear your problem. i wish i have answers to your queries, but i am also new to this cancer thing. maybe what we could do is offer prayers for each other for God to give us answers and for our complete healing. this i will gladly do for you.

lifealoft, i can see that you already went thru 2 chemos, one with ACT & the other with carboplatin and taxol within only a 3-month interval. why so? was it really pre-planned by your MO? or was the first chemo ineffective hence the change. what was the difference between your 2 chemos in terms of clinical findings and succeding lab tests, if there are any?

i read that carboplatin is a new and very good complementary drug to taxol. was it effective for you? sorry for the many questions my dear. i am just so scared of the chemo's side effects & uncertainties, and becoz of the previous deaths (about 7 years ago) of my father and my cousin doc. my father died from stage 4 kidney cancer about two years after the operation and without chemo, while my cousin doc also died 2 years after having mastectomy and chemo. she died a year ahead of my father. i also have other relatives who all died becoz of this dreaded C. So now i guess it is my turn to challenge this disease and hopefully be the first one to survive in our family.

i think my post is already too long and i wouldnt want you to get bored with it, so this is all for now. i will let you know of whatever developments i may have in the future and i hope we keep in touch. it is comforting to know there is someone who shares my pain and cares.

again, my deep appreciation for your support and may the Almighty guide and protect us. no goodbyes please.

gmmiph

LifeAloft

gmmiph, I will send you a private message and hopefully answer some of your questions.

((Hugs))

BanR

Thanks Tom (breastcancerhusband) for your prompt reply.

thanks lifealoft and gmm for the good wishes.

Called them up and pushed for an early appointment. The mammo was done first followed by ultrasound since this centre never does a diagnostic ultrasound without the mammo happening before it. No idea why. They couldn't figure out anything Next week is the MRI guided biopsy.

LoveMyVizsla

Good luck BanR. Have you had an MRI guided biopsy before?

Anonymous

hi lifealoft,

thank you for that wonderful & informative private message you sent me. that really gives me high hopes to look forward and plan ahead.

yesterday, i've had 2d echo and blood tests, today, i'll be having bone scan. tomorrow, ct scan. results will be completed next week and then back to my MO for assessment and possible chemo. i'll keep you posted for more.

hi banr, thinking of you and hope youre doing fine.

i'm praying hard for all of us here afflicted with this dreadful disease. let's all try to use the "power of group prayer" for our complete healing. the combined prayers of 2 or more persons is better than just being alone and knowing that somewhere in this world, someone is praying for us is certainly a big lift to our spirits.

keep in touch, God bless.

gmmiph