Calling all TNs

Shopgal2

Val sending love and healing to you.

Al husband congrats on your wonderful news.

Thanks again everyone for your condolences on my mom. last year this time I was healing from my reexcision and preparing for my port surgery to start chemo in sept. Long year.

jenjenl

last week I met my new oncologist in Charleston. He was great! His approach on monitoring more closely aligned with what I wanted. He does routine labs and prefers to see patients quarterly. He scheduled a bone scan and a chest and neck scan for tomorrow. This is to Baseline and also assess the pain I've been having. I've been having pain in my back for about 3 months, and thought it was just from moving. Now that it's been 3 months I think it's time to look into it. The pain I'm having in my neck is on the right side. so scans tomorrow and verbal results on Thursday.

Shopgirl, my heart goes out to you. xo

Al, how awesome is that. Exciting times.

Allydp

Val...I'm at a loss for words. It doesn't seem fair what life throws at us. Seem like the breast cancer battle alone is enough for any one's life time. What a relief you caught it in time and were able to rule out cancer in the process, but I'm still very sorry you now have to go through the rehab and healing. Sending you tons of hugs and prayers. Please keep us updated on how you're doing.

AL - congratulations to you and your wife!

nrsteph

anyone still here?

Cathytoo

I'm here. What's up

nrsteph

thank you! I was having a moment. ..took some melatonin and went to bed! So nice that you responded so good to know that people like you are here and will answer!! Thank you!

jenjenl

doctor called and the scans are clear! I have to say I am kinda surprised. I do think the hysterectomy is making my bones weaker and causing more arthritis. The only thing they saw was something small (3 mm) on my larynx (something like laryngocele - herniated, it was greek to me). Follow up with ENT is going to be scheduled but advised the probability of it being cancer is low. I am going to the hospital tomorrow to get the papers to understand more. I am very happy tonight. I feel if rest of the scans are good this is going to be something minor. Love my new oncology team!

The labs came back with interesting data though - I have a message into him through the portal on how to interpret them:

Calcium - Serum = 10.40 mg/dL (expected range = 8.4 - 10.2) --> slightly high

Albumin - Serum = 5.20 g/dL (expected range = 3.9 - 5.0) --> slightly high

WBC - Blood = 4.1 10^3/uL (expected range = 4.6 - 10.2) --> Low

Any feedback welcome. xo

Lookingforward66

Good evening to all,

Jenjenl so glad all clear! As for arthritis, my oncologist told me chemo can start up arthritis if you were prone to get it. I had none before my just 2 chemo infusions. I now have a lot, but exercise is keeping it manageable.

I said I would keep you all posted. Had my new ENT appointment today. So glad I did. No polyp in sinuses. Growth on tongue/ throat looks like old tonsil enlargement. Vocal cord has some non in sync movement but not at this time a factor as can happen now & then or with age. ( Great. My age!)

Had one CT scan, not 3! Called & got me in within 1 hour. Appt with Doctor at 2, out waiting for car by 3:45.. Did I say I really like Sylvester Comprehensive Cancer Center. I have to take CD of previous CT on neck from 2012 tomorrow so they can compare. Will be called next Wednesday with results & plan if need one. Doctor thinks is nothing major or even cancer, but will monitor me. I will see him in 2 months if all ok, just as check up.

Thank you all for being with me. I know you all understand how much this site means to all of us.

I will continue to keep you posted on my outcome.

Thanks & health to all,

Marsha

cubsfan

Jen I wouldn't worry at all about your labs. They are only very very slight out of range which technically are in range depending on the lab that is running them. I would be very pleased !!!! Continue with good health. My 35 yr old daughter was diagnosed in June w triple negative stage one and we found out today she is BRCA1 positive

Curlyq1974

Ugh cubsfan! The BRACA mutation.... I was first in my family to be diagnosed with the mutation and before I could do the prophylactic stuff, I had BC... BLAH!!! Then my Mom found out she has the mutation. And my Aunt. Both, thank goodness had hysterectomies many years ago. As a result of finding the mutation, both had prophylactic mastectomies. My brother also has the mutation but he as a man, there is not much to do except watchful waiting. It is kind of odd how we didn't realize cancer "runs" per se in my family. My maternal grandmother died of ovarian cancer. Her sister is a 30+ year breast cancer survivor. We didn't put it all together until I started to have lumps in bumps. The cancer seems to skip generations... My mom, aunt and uncles all are fine... Me, not so much! And once my Mom found out she had the mutation and gave it to me, it caused her GREAT grief!! She kept apologizing over and over - like she did this on purpose or something. Never mind ALL the wonderful traits I inherited from her, her strength, resilience, brains... UGH!!! The BRCA ride is another roller-coaster I hate to see folks have to endure. Prayers for strength and guidance!

jenjenl

We are getting ready for some major storms here in Charleston - I think tomorrow is the big day . They've already canceled school for tomorrow. Lots of grey clouds and winds are picking up.

I got the report and it says:

"There is a 3 mm pocket of gas in the right ventral hypopharyngeal soft tissue. This is consistent with a small laryngocele probably tracing upward. Some authors advocate laryngoscopy when such a finding is encountered as an association with malignancy exists. Probably not significant but ENT consultation recommended.

Incidental notation made of a torus palatinus. There is a retention cyst or polyp in the left maxillary antrum 7 mm in size. "

ENT scheduled for Tuesday. I would have thought that the CT would be able to tell if it's malignant from the contrast?

ScotBird

Marsha that is fantastic news I've been worrying about you and anxious aboutthe long wait for your appointment. So happy for you that everything looks OK. XX

ScotBird

Jenjen good luck for the appointment and also the storm.... X

Seraphima

This looks like a pretty active thread. I might not be able to keep up, but it's good to see everyone who posts here.

I just found out today I am triple negative. The docs have known for a few weeks, but I had to ask for copies of the oncology reports and go over them myself. So, other than the basic definitions, I'm not sure what it all means except it's looking pretty scary what I've read over the last few hours.

I'm 50, I think most of the details are coming up in my sig except I had numerous mammograms, several ultrasounds, and an MRI, and none showed the tumor, so I didn't expect it. Oh, and my mastectomy was only a partial. My mom died at age 53 of cancer (she had breast cancer, but I think she also had stomach cancer and not sure which came first - she was dead less than a year after her diagnosis - scares me writing that!). My Grandma (her mother) died a little older from cancer - breast cancer and lung cancer, but her breast was already showing severe signs when she finally sought help. She had been taking care of my Grandpa, and right after he died, she showed her daughters. She too died less than a year later.

I have been feeling good about the fact that the lymph nodes showed no sign on cancer, and Paget's is not aggressive (they say), but the 4cm tumor was a surprise. Still trying to land on my feet. I woke up feeling fairly decent today for the first time in a long time. Still have pains from surgery, and tired (thyroid also a problem so can be that) ... but I felt like "myself" today for the first time in months.

Anyway, I read just the first posts of this thread, and most recent ones. I hope I'm not out if place here. Just trying to find my way through all this.

Meadow

Al, oh my, the greatest love is about to be yours.....that grand baby. Congratulations to you all

Jen, I'm no good at reading scans, but I like the "probably not significant" part. Sounds great. Buckle down during Hermine, be safe.

Shopgal, hugging you tight

Ally, sending you my hello

Marsha, great news!

Seraphim, Welcome here. So sorry for your losses due to cancer. Don't fear Triple Negative, great strides are being made in treatments, we are all proof of that.

Sending all here my love

Shopgal2

thanks meadow and everyone else for your support. Today was tough as it was not only 1 week since my moms funeral but it was the anniversary of my first ac chemo last year.I really hate the late summer season now.

Seraphim welcome and know that we are here for you. And as meadow and a lot of others will chime in to say that there really is a lot of new good treatment research being done now on triple negative. The good thing for us is that our cancer responds well to chemo, and chemo is tough but doeable. Just take it one day at a time.

Seraphima

Thank you, Meadow and Shopgal.

That is good news. I'm learning so much that I confuse things - I had in mind that I had read that triple-neg did NOT respond well to chemo.

Although - they are not giving me chemo. I had a partial MX and am scheduled for rads. I don't know if you meant later or now. I'm really hoping for no recurrence, of course.

anotherNYCGirl

Welcome Seraphima! You are right, it can be hard to keep up with this board, but everyone here is wonderful! They have been such a help to me.

Marsha, - so glad to read your update.

Shopgal, - keep your chin up, - and think GOOD thoughts.

Hoping all in the path of the storm stay SAFE and DRY!

LoveMyVizsla

I don't know anything about Paget's. Is chemo not recommended for it? Sorry you are here Seraphima, but welcome.

I have a question, which I think has been asked before. When does your recurrence clock start ticking? After all the treatments? Upon diagnosis?

Seraphima

Thanks, another NYCGirl! I'll try to keep up, but I'm falling behind in another forum I've been a regular in for years.

LoveMyVizsla - I think it depends, iirc. I'm really on information overload, since it took a little while for the idea I had cancer to sink in, and for the past month I've been foggy-brained a good bit of the time from the two general anesthesias from surgeries. But I think they sometimes do. I'll look at my schedules - I don't think I see the oncologist again until after rads start. I didn't WANT chemo anyway, but I was following their recommendations. Paget's is not aggressive, and my other biopsies were all clear, so maybe that's why no chemo. But triple-neg IS aggressive? So I'm confused again. I'll get there.

But I may not manage to find another person who has Paget's AND is triple-neg.

Thanks!

LoveMyVizsla

You could try scrolling through these TN pages, looking at people's diagnoses and look for someone with Paget's. You can always message them if you have questions.

Seraphima

That's a good idea. I spent a little whie lookng through the Paget's thread for TNs. I will try the reverse. Thank you.

JulieAggie03

Hi y'all...i haven't posted in a while I'm sorry for abandoning the group! Life after chemo and surgery has been busy with vacations, work trips, turned down a job offer and almost moved to Philadelphia/decided to stay in TX, and my son started Kindergarten! Just feeling sorry for myself today needed to post where people understand. At another 3 month follow-up with my MO today, everything is fine I'm doing great, yada yada. It just sucks that I will have to follow up like this for the rest of my life and that no scans are done unless symptomatic...uh if it's symptomatic then it's too late! I feel like a ticking time bomb. I know I'm "lucky" I got a PCR and I should be ok but still I just have this unsettling feeling I can't shake.

Have my stage 3 recon surgery tomorrow, getting my right side pocket adjusted to make things more symmetrical and decided to go with fipples...maybe looking more "normal" will help me feel normal again!

Hugs to all, thanks for listening, I will try to read back bit and catch up!

Cathytoo

JulieAggie03...I know exactly how you feel. I am finished treatment...which went very well. Feeling great. Looking great. Lots to do...eating well, low fats, exercising daily. BUT...breast cancer never leaves my mind. I even dream about it. My TN diagnosis is like an axe over my head. Wish I didn't think like this. I think,being TN, cancer will be a part of me forever.

jenjenl

Well after getting a scope shoved up my nose, the ENT specialist indicates it is not cancer, it's a minor case of laryngitis. so that's nice to hear! Just thought I would give everyone an update in case somebody else had an issue like this in the future and was searching for it.

my daughter turned 9 on Labor Day and she had a great birthday! I love all of these milestones.

Valstim52

Oh Cathytoo, I'm right there with you. I feel like I have a cancer bullseye on both my back and chest.

Cathytoo

Valstim52...do you think you ever really feel carefree again

Lookingforward66

Hello to all,

First to those that wonder if we'll ever feel care free again. I can say most days yes. Sometimes the "what if's" creep in but mostly now they are carefree.

Now on to my results. CT revealed "No Cancer". But need to monitor throat growth & decide if needs to be removed. Looks like old tonsil growth at base but growing in lump style at base & therefore sometimes causes choking & cough. So may need to be removed.

Dodged a bullet....feeling like my Angels were watching.

Wish all good health.

Marsha

Valstim52

I think right now, I may never be carefree again. After my first BC dx 24 years ago, it took almost 5 years. Mainly because they kept saying if you make it 5 years you will be ok. Based on what? who knows. So now, I'm older and much more aware of the fact that I could recur. Especially being TN and IBC.

I want to get to the point where it's not on my mind every day all the time.

jenjenl

Valstim52, keep saying your signature quote to yourself. You have to have that self awareness when those thoughts creep in you knock them away. Do you work or volunteer during the day? Do you have some type of routine that keeps you physically or mentally busy? Yes, you may recur but its not today and maybe not tomorrow.

xo