Calling all TNs

Curlyq1974

Ugh Allydp!!!! I am right there with you... same boat. Lumps and bumps, not sure what is good what is not. I have so much scar tissue it isn't even funny. I go on the 15th to see my MO and we are going to chat about the lumps and bumps. I have no clue if recurrences present like you are feeling... I hate even typing the word... and I try to push thinking of it to the far, far, far away place in my brain.

BUT, I do know that right after my BMX, I had pressure in the area of my tumor. So I had an ultrasound and there was lots of fluid, which lead to an ultrasound guided needle being inserted and several cc's of fluid being removed. Who knows why it was there, it was, and it was removed and tested and all good and the pressure was gone.

I also know that when my TE got infected, the pressure was intense before I figured out was going on. Looking back, and now that I am typing this out to you... I wonder if my body just didn't like the TE from the get go and it took months to finally succumb to a full blown infection. Hmmmmm.... Damn bodies - if only we knew why they do the things they do!

For me, as the 15th approaches, my anxiety is rising. I have not been following up with my docs like I was told to do. BUT in my defense, my breast surgeon retired, my rad onc moved away... so, I have to re-establish care with those types. Again, another topic for my MO, do I need to re-establish care with a rad onc, now that I'm done with radiation? And does he have any recommendations for a new breast surgeon.

IDK... BLAH.... would rather plan my next vacation or dream of retirement!!!! Much, much better thoughts:)

Keep us posted and I'll be in your pocket on the 18th.

Allydp

Oh man, Curlyq, I'm sorry you've got these crappy issues going on too! It's so frustrating because I'm trying to focus on all the good in my life, but then I get this pressure or once in a while pain and it totally throws me back into the cancer and worry mode. Just cramping my style, which sounds like you can totally relate! I actually just saw my onc at the beginning of the month and mentioned it. She wasn't too concerned, but said to come back if it persisted or got worse, so back in I go. And yes, like you said, now that I'm officially addressing it, I'm actually more anxious about it. I'd much rather be focusing on other things! By the way, it really stinks your med team scattered like that. It's so stressful trying to find good doctors. I'm sorry you have to start from scratch again. Hang in there! I'll also be in your pocket for the 15th!

ALHusband

My wife, for some months after her BMX, complained of shooting pains in her BC breast as well as tightness and "pulling". Her PS and BS both told her that this is "normal" for some ladies (not all) and that it may resolve itself...or not. Her PS said she MAY have minor, occasional pains, etc forever, but that it should never be allowed to get beyond minor or occasional, and, it it ever got beyond minor or occasional she should let them know. As for the shooting pains the nurse said that is "nerves reconnecting and coming back online" after the surgery. Now, a couple of years later, it does seem to have resolved itself.

Meadow

Congrats to Placid and Maggie! Wonderful.

Thank you Cocker and Ally.

Ally I have those sensations too, I know they are so common around our scars and tumor sites. Like Al said, the twinges happen. You are cancer free my love! Just try to stay in that frame of thinking, I know it is hard with all you have been thru. Sending you a big o hug.

Love to all

NavyMom

I am 6 years post bilateral mastectomy with ALND on the right side. I STILL have occasional right armpit "zingers". Just about knocks me off my feet when it happens but only lasts for a minute or two. Comes on with no warning and for no reason. Luckily, as time goes by they are less often.

Hello and welcome to all you new gals. And hello to all you ladies (and gents) who continue to come here to love and support everyone.

eileenpg

Question: I live up North in PA in the summer. A gentleman in my small town is an oncologist. He informed me there was no bases for me having 6 rounds of taxotere and cytoxan. Four works just as well. He questioned why 2 oncologist I went to had me do 6 rounds. Did anyone else do 6 rounds? I have a follow up in 2 weeks and I will ask. He told me to google and see if there was any proof 6 is better.

Allydp

Thanks everyone for the encouragement and reassurance. I get those shooting pains too occasionally, but this pressure is new and different, and getting worse over time. I wish it was anywhere on my breast other than exactly where my tumor was. It would be so easy to know that was normal post mastectomy stuff, but the location and worsening is what has me a little concerned. More than likely I'm sure it's just scar tissue though. Just stinks to have to go through the evaluation and probable wait on scans!

sylviaexmouthuk

Hello everyone

I was looking this thread on the Triple Negative forum and noticed that it was not listed on the list of recent thread activity. I was wondering why it was not coming up. Does anyone know why?

Best wishes to all of you going through treatment. It can be a long and difficult journey but you can get through this. Best wishes from all of us in the UK.

Sylvia

sylviaexmouthuk

Hello again

Just to let you know I have solved the problem. Everything is now OK.

Sylvia

Lisaj514

http://youtu.be/MnJVHohAv48

A song written and sung by a BC survivor from my bravehearts camp retreat this weekend in the poconos PA. Please listen. It's on iTunes too and all proceeds go to camp bravehearts (an oncology camp for women) and American Cancer society. It's beautiful and says it al

Cocker_Spaniel

Lisa when I click on it it says not available.

JAN69

Lisa, beautiful music, beautiful message. Thanks for sharing.

Cocker, We have fire fighters from New Zealand working on our fires! Thanks for sharing. We don't expect rain until November usually, so we've got a long fire season ahead of us and our firefighters are exhausted.

Ally, Sorry you have a painful worry. I hope you get it resolved soon. I think of you often.

slv58

Ally, thinking of you- I hope you get in to see someone quickly so you don't have to worry. Positive thoughts!

Luvmydobies

Well we made an offer on a house yesterday. It's not my ideal location because it's 2 1/2 hours from my volunteer work. It is close to several good places to eat and an outlet mall and the house is on four acres. It's further from my doctors but I can still see them. It was near impossible finding a decent rental home since we have three dobermans. I'm exhausted and just want to sleep, I'm hoping it's just from stress! I am not in the mood to do anything but there's so much I need to do. Ugh. I keep telling myself God has a plan and things will work out.

Ally, I'm thinking of you and keeping you in my prayers! HUGS!!

Thanks for letting me vent. I know my house issues are small compared to the cancer battle we all are going through so I do apologize for sounding whiny lately. I am canceling my doctor appointment today for my ankle. It's still swollen but not as bad. Still a bit worried but the appointment wasn't with my PCP but another doctor in the same office. I'll keep an eye on it and will get in with her if I have to.

MomMom

Ally & Curly - Keeping both of you in my thoughts as you await appointments. Sending hugs and positive thoughts your way.

Lisa - Thanks for posting. Camp braveheart is awesome.

Shari, Good to hear from you and hope you are getting stronger and feeling better now that treatment is done. Good for you!

Huge congrats Placid & Maggie!

Paula

slv58

Thank you 

Paula I am feeling a bit better and have even managed to go on my treadmill for 15 minutes everyday for the last week- baby steps, lol. Still get shortness of breath but I think it's improving, could also be because my hemoglobin is low. I find out about my bone scan on wed. I wasn't nervous until today but I'm hanging in there. Hope your doing great!

Luv, I'm happy you have found a place that will accept your dobes! Although 2 1/2 hours away isn't ideal- it is doable. My hospital of choice is 2 hours away- it was difficult doing 33 rads and travelling that long everyday, but I did it. I hope your quickly able to make it feel like home! Hugs for what your going through, it can't be easy.

Allydp

Luv - glad you found a place! You've been in my thoughts during such a big transition.

Shari - so great to hear from you! I'm amazed at your strength through chemo and how you've been able to exercise a bit! You're in my thoughts quite frequently. Sending you much love and hugs.

Thank you so much for all the reassurance. I really do greatly appreciate it. I've been trying to pay close attention to when exactly I feel the pressure and pain and what type of pain it is. I'm noticing I feel the most pressure when I'm wearing a bra. I've had these same bras since about 3 months post mastectomy, so they're nothing new. Same with the pain, I feel it most when wearing a bra, and driving of all things. I think because the way I sit I'm pushing on that breast a bit. It's sharp, but not like the sharp shooting zingers...more of a sharp ache that lasts a few minutes at most. Again, I truly don't think it's a recurrence, but it's definitely messing with me right now. Part of me is wondering if I should cancel the appointment and wait to see if it just resolves on its own, since making the appointment has brought on a bit of anxiety for me. But I'll probably keep it just to be safe. Thanks for listening ladies.

slv58

Ally, keep the appointment, it's the only way your not going to worry about it. It could be lymphedema or scar tissue. I always say that MOs are there to check our worries- don't ever feel that something is too little or you don't want to bother them. TN is sneaky so we have to be proactive even if it's nothing! Hugs xxx

Luvmydobies

Ally, have you thought that the pressure you're feeling could be the beginning of Lymphadema? I have truncal Lymphadema and sometimes I have pain and pressure/heavy feeling. I'm not diagnosing but it's just a thought.

Edit: Shari and I must have been posting at the same time. LOL. She mentioned Lymphadema too.

Meadow

Ally I agree with slv, to keep the appointment. We just need reassurrance sometimes. Then you can relax. I am anxious to hear what they tell you. Like LUV suggested...any Lymphedema? I get the "when you are driving" thing, I find that position gets my attention too, as I try to "listen" to what my body whispers to me. Please update us asap.

Luvmydobies

Ally I forgot to say that mine is worse when driving and/or sitting in different positions. I hope it's just some scar tissue or something simple. While Lymphadema is better than cancer, it's a pain to deal with too!

Allydp

I don't have any swelling whatsoever so I'm not sure about lymphedema but I'll definitely bring that up at my appointment. I don't feel any lumps or bumps either. I'm really going to push for an MRI so they can see everything at once...the implants, chest wall, rib bone there, etc. I feel like that would be a one and done thing while the mammo, then sono, then possible MRI is such a long drawn out process. My reasoning is going to be the MRI emits no radiation and, since I had so many scans last year, I want to go that route. Hopefully they oblige. I'm seeing my onc's NP and she can be a bit of a pill.

ALHusband

Allydp it's just the opposite with my wife's NP. She'll do anything you ask her to do! LOL! It's the Doc who will poo-poo things. We've learned to always ask her for things we want! I don't think the Doc is as willing to tell her no as he is to tell my wife!

MomMom

Ally, I agree with you that the MRI is the way to go. I would push for that too. Since an MRI was what diagnosed my TN at stage 1, I have a lot of confidence in them. I had my first follow up mammo & ultrasound post treatment in Nov. 2014 - all clear. Six months after that had a follow up ultrasound in April 2015, which showed something that had to be biopsied. So stressful, but thank goodness it was benign (scar tissue). Next mammo scheduled six months later in Oct. 2015. I wanted another MRI in Oct, but my BS said because of the recent biopsy MRI results could be skewed, so just a mammo. Assuming all is well at the Oct mammo, next scheduled for an MRI in April 2016. I really like the idea of getting an MRI - especially in the first 3 years post diagnosis.

BanR

hello everyone

missed many months' of conversations here.. but now i am back.

simple: happy to hear that its fat necrosis

slv: how r u dear. last time i was online, u mentioned u just got diagnosed with a recurrence.

cocker..there u are ..happy and cheerful as usual.

so good to see familiar names ..chatting as usual and sorry to see some newbies too! am sure by now u have found out that this is an amazing group for support.

my daughter started grade 2 from today!! we had a very busy summer..

will be regular this time

love and hugs!

Jennagwyn

My name is Jenna. I was JUST diagnosed July 30th 2015, so I'm a noob. I'm 31 years old. bilateral mastectomy August 11 w/ expanders. Tumor was stage one. I will be starting chemo September 25, 4 rounds A/C, 4 rounds taxol. Genetics were negative. I have a one year old and I want to see her whole life. I'm hoping the chemo will knock out any wayward cancer cells and help prevent recurrence. I'm doing my homework, and trying to do what i can do to aide symptoms, and what i can do to prevent recurrence. Thanks for having me!

CinderellaNC

Jenna welcome to the club that no one wants to belong to as they say. You will find lots of support, good advice , tips , encouragement on this site. So always take advantage of that when you feel like it . Sorry you are having to deal with this at such a young age. You will have lots of folks pulling for you along the way. Sounds like you have your treatment plan lined up and once you get going with that there is a great sense of relief to be taking a proactive stance against the cancer. Things do start to look better so hang in there

greenae

Hi Jenna

I am sorry you have to deal with this, but I also welcome you to a group that has been so supportive and helpful. Be sure to be in touch with a September Chemo thread, you will learn so many tips to get you through and minimize side effects.

I hope you are healing well...sending you hugs and strength! Don't hesitate to question, vent, laugh and cry with all the wonderful people on here who have gotten me through treatment.

Arlene

LillieRose

Hi Jenna,

Sorry to see another young woman here... I can totally relate! I will be 31 next month... I have a 10 month old baby girl! I feel all the feeling you feel... Wanting to see her grow up is the biggest! Treatment is hard but doable... Tnbc is scary but look at all the survivors on this thread! I have to believe I'm going to be one of the lucky ones!

I had pretty much the same treatment as you.. Just did chemo first! I had a BMX on 8/12 without recon and I'm healing okay. These ladies (and men) are amazing and give me strength, support, and information everyday! Feel free to PM if you have any questions or need to vent.

Good luck!

Teka

*Welcome Jenna*

Good Morning!!

A bird seed escaped.