Calling all TNs

Cathytoo

I am praying every day for all of us❤️

Anonymous

hi cathytoo,

thank you for your prayers. we definitely need it. God bless. A big YES to the power of prayers for all of us

BanR

lovemy..

An MRI itself is scary enough. I can't imagine a needle going in, in a claustrophobic environment.

LoveMyVizsla

BanR, they don't put the needles in while you are in there. You go in for them to locate the lump, pull,you out, put the needles in. Back in you go to make sure they are in the right place, then they take the biopsies. Make sure they use enough lidocaine.

Batesburg

Me too, Cathy

Cathytoo

ACHES AND PAINS!...my last infusion was May 18th. I had no side effects but now I have shoulder pain that has progressed to waking up feeling stiff and in pain all over. I was fearful of a recurrence but saw a physical therapist who discounted this because the pain does lessen and/or disappear. He said pain from bone mets stays the same. But, my question is...have any of you experienced aches MONTHS AFTER chemo?

Meadow

Cathy, it is very common for bc patients to get a locked shoulder. Not sure why, but it is a "thing". I had a locked shoulder after treatment, and had PT to improve it, and it did improve a lot. A yes, aches too! I hope you get some other responses too. Hang in there.

Ally, so good to hear from you,

Cathytoo

Meadow...does it seem strange to you that this would happen 2 1/2 months after radiation? It is my right shoulder and it was my right breast. Radiation position was very painful for me. I guess I should have a bone scan or MRI, but I just don't want to keep chasing cancer. I have had body aches and pains before (I'm in my 70's), but breast cancer changes everything! I'm hoping that exercising in a hot therapy pool will make a big difference. Just thinking about that pool makes me feel better

VLH

Cathytoo, I think the long term side effects of radiation are downplayed. I haven't vetted this site, but it mentions shoulder pain and restrictions in movement. I've had an encapsulated shoulder for years and know it will be a problem for radiation. I was surprised to see where the radiation itself can cause a second cancer in 8% of patients. I thought of that complication as very rare, butt almost 10%. Radiation is recommended routinely with lumpectomies, but YIKES!

http://www.thebreastcaresite.com/after-surgery/rec...

Lyn

breastcancerhusband

Hi Cathy

My wife still gets aches and pain from chemo - she finished treatment May 2015. She never had radiotherapy, but like chemo it can takes an age to recover. I hope your aches and pains get better soon. Long hot bath!

Incidentally, are you really in your 70's! You look way way way younger in your picture!

Tom

x

jenjenl

Chiming in on the aches and pains. I have chronic hip and back pain ever since finishing treatment. I think the hysterectomy made my bones very weak. I noticed that after a weekend of really playing with the kids hard my back hurts a lot. I had a scan recently and it was fine, it was clear. I also have a lot of right shoulder right chest locking up after all these years. It's definitely a real thing.

Curlyq1974

Surgery scheduled for Monday... whatever "it" is has received an eviction notice. And the wait for pathology to come back starts Monday. Just curious, has anyone heard of someone TN that has bmx, 6 rounds T-AC, 32 whole breast rads that has a local recurrence? I have looked thru the boards and have not found any.... But it could be I'm not looking hard enough to give myself a false sense of hope that it is unheard of to come back after all that!!!

Batesburg

I would be so totally surprised if it is a recurrence, Janet. You did everything to keep it at bay and trust that this is simply a pesky little benign thing. I have not heard of a local recurrence after THAT much treatment!

Batesburg

Speaking of aches and pains.....I had left sided rib pain - all up and down my left side and into my shoulder blade. Now it is completely gone from there but now my neck- both sides- feel so stiff and tight and painful. I think it is all the stress of overwhelming fear for a month. I feel exhausted!

Any one else get a major scare of metastasis and then your body screams out at you from stress in a totally different place???

Janet

LoveMyVizsla

((CurlyQ)) Sending you best wishes, a speedy recovery, and benign findings.

Anyone's MO put them on Zomeda? Mine wants to do a bone density test, then depending on the findings, maybe put me on Zomeda. She says it would give me a percent or two protection from recurrence.

LoveMyVizsla

BanR, when is your MRI? Thinking of you.

Rhiannon426

I'm sorry it's been so long since I've posted anything. My Husbands sister passed away June 14 and that was a lot for the family to go through. She had breast cancer that had metastasized to her lungs, liver, and bones. She was one of the bravest women I know. My last catscan was normal the 4 mm module is still there but it hasn't changed so that is good. I get my next catscan in january and hopefully it will be fine as well. As of this past September 25th I am cancer free 1 year!

simplelife4real

Banr, thinking of you as you get your biopsy. I hope all goes well.

Curly....hoping that sucker is benign when that get it out.

Ally, I'm in the same boat with you with hip pain and no appetite. Like you, the old me would have been banging on my MO's door to find out what is going on. As it is, my appointment with my MO is in mid-November and I'm fine with waiting. I'm pretty sure mine is bursitis or some such thing so I've gone so far as to request an appointment with a sports medicine doctor. I hope everything turns out to be okay for both of us.

Cathytoo

simplelife4real...I have had continuing aches and pains for the past month. Some days worse than others. I did see a physical therapist for an evaluation and asked about bone met possibility. He said that he saw no "red flags" during the evaluation. I've been doing the prescribed exercises, and I do see improvement, but I'm not "ache free". I'm just one year from diagnosis so a recurrence is upper most in my mind.

Cathytoo

LOW VITAMIN D3...This morning I've been reading about the link between vitamin D3 and breast cancer, especially TN. Studies are now showing that low levels indicate poor survival times. Anyone have similar info? I was dangerously low at the time of my diagnosis and have not been able to raise the level to a moderate range.

Sister-Sister

Hello I'm Tracey in Michigan, found Lump Sept 18, 2012. Few weeks later, Diagnosed TN, Stage 1. Had Lumpectomy with nodes removed. Nodes were normal. Had 6 weeks of Radiation with Boost. Declined Chemo. In December 2016 had swelling under my Collar Bone. Went for Mamogram, it was good, but Dr. Biopsy the swelling. I'm now Stage IV Metastasis to Lung and Brain. There wasn't a Class that explained the severity of my Breast Cancer and the possibility of receiving or not receving Chemo. Drs. Didn't take the time to educate me and I've never been Sick my entire life, so I didn't know what to ask.

I started Chemo Feb 2016, until a few days after my birthday (51), I lost my ability to walk and function because of Brain Metastasis they wasn't being looked after. I had Whole Brain Radiation with Theraphy, but while I was hospitalized I wasn't receiving Chemo. After 3 weeks in the Hospital I was released (Damn Medical Insurance) not quite well. Went to visit my Oncologist to find out about getting back on Chemo and while I was waiting for New Chemo, in Pill form, I developed a Plueral Effusion (Fluid around the Lung and Heart) had to have Fluid Drained, just was released from hospital 10-21-2016. I'm now on Oxygen.

LoveMyVizsla

((Sister-Sister)). Are you still seeing the same oncologist? Gentle hugs to you.

LifeAloft

Hi Tracey, I'm also from Michigan. Just wanted to say hello and welcome, there are a lot of wonderful women here. I'm so sorry that you are having to deal with all of that. Sending you positive thoughts and hugs.

~Kelly

ALHusband

My wife is over 3 years post chemo and still gets strange aches and pains and still has "frozen shoulder" now and again. She kind of writes it off as the "new normal".

TifJ

Sorry to say that even after 6 years, the aches and pains are still there. I also developed a frozen shoulder after chemo. My port became infected 5 days after my last chemo, so it immediately came out, but the wound was left open due to infection. I didn't lift my arm much for 7 weeks while it healed. I then realized I could barely move my arm. It took 10 months of PT to get it back close to normal. This was on my opposite mastectomy side! My MO told me that frozen shoulders are quite common for women who undergo drastic hormonal changes (thank you chemo). My body just seems to be sensitive everywhere, ribs feel sore all the time (I didn't even have radiation). Cancer, the gift that keeps on giving.

VLH

I'm so very sorry, Sister-Sister. It seems like the oncologist should have discussed the higher risks of triple negative so you could balance them against the chemo risks to make a fully informed decision. This cancer is so aggressive and sneaky that getting chemo wouldn't have guaranteed that you were safe from metastasis and chemo can cause its own life altering and even fatal complications, but it must be frustrating to feel that you didn't have all the facts regarding chemotherapy.

My heart goes out to you. Do you have family or friends nearby to support you during this challenging time?

Lyn

anotherNYCGirl

Hi All,

I, too, am part of the worriers here, and I feel for all of you.

Saw my breast surgeon one week ago, today, who didnt see any areas of concern (said she'll see me next october), but agreed that if my back and hip aches continue, to schedule an mri. I am working on that with my onc. To make me more NUTS, - yesterday i see a slightly pink area on my left breast, about the size of a dime. I have an implant on that side for almost 2 years with no issues. If I run my fingers over the pink area I can feel something underneath, not much, but something. I am tryyyyyyying not to panic. I immediately think IBC that has spread to my back and hips. My surgeon squeezed me in last week, i doubt they will do it again so soon!

Any words of encouragement? Anyone had a pink area that turned out to be nothing?

THANKS!

Hugs and BE WELL wishes to everyone here!!

Anonymous

Hi anotherNYCgirl,

This is only a few times that i've been in this thread and I just saw your cancer history.

You are already an ICON as far as surviving cancer is concerned. From 1998 to 2016, you hang tough.

You don't need any words of encouragement anymore coz you are a true-blue battle-scarred warrior. What I think you should do is the reverse, try to encourage others, helping and comforting them, and as you do this, you will be blessed and find yourself at peace and with a sense of purpose in life. Makes sense?

I can only offer prayers for your complete healing as I believe that Group Prayers are much better than individual especially if we are praying for a common cause. You can also do this for others, for all of us to be delivered from this dreadful disease.

May God be with all of us.

gmmiph

math666

Cathytoo, from the following link, you may find the information for Why and How to take Vitamin D to prevent recurrence.

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_post129610.html?KW=Vitamin#129610

Meadow

Welcome back math666, and thanks for the info. How is your wife? Can you share some of the changes she made to diet, supplements, vitamins, etc?