Calling all TNs
Comments
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LUV it sounds like a little lymphedema maybe. My mom had it when she had Lymphoma. The doctors said they couldn't do anything about it. Her Chiropractor massaged it away in about 10 minutes and it never came back! LOL!
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Lillyrose I too think a second or third opinion would be good to help you but its good to know they are not just going willy nilly and giving you everything when you may not need it plus you had no node involvement. I would have been over the moon if I hadn't had to have radiation. God willing you never need it but it is armour for in the future whereas once you have radiation you cannot have it again in the same area.
AL loved the minion and it's so true of Google.
Carolina so sorry you and your family are going through this crap. Because you have had such a whirlwind time it will be hard for you to make a decision but I think I would wait until the genetics come back because this could alter your treatment and decision tremendously.
Teka always there with some comforting pictures. Thank you.
Mags four years woo hoo. Keep on with that living girl.
LUV I would eat my hat if you had mets to your ankle. As for a blood clot you would certainly know if you had one. It's extremely painful with swelling, redness and is very hot and it wouldn't get better once you are up and about. How is your house rental coming along.
My old feller caught a cold and was coughing badly. He went to get a tyre out of his car boot, had a coughing fit and now has a hernia. So it's surgery for him shortly. Never rains but it pours.
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CarolinaAmy, first of all I want to say I'm prayingnfor your sister and you and your parent's of course too. I had surgery first and always think I wish I knew whether or not it responded to chemo. That said I can't go back and change anything so I just have to hope and pray the chemo took care of any rogue cells.
Al, I don't think my ankle swelling is Lymphadema. I do have truncal Lymphadema from the breast cancer stuff but I don't think that would cause my ankle to swell. I am going to my regular doctor Monday because I'm still nervous. It's not swollen much in the morning but swells up some after I've been up.
Cocker, the house stuff is such a pain! I'm mostly mad at my husband because I do not want to move! He's being a real ass about it though! Nobody wants to rent to people who have dobermans because most insurance companies won't cover them because they're on the "aggressive" breed list. State Farm is about the only insurance company that will allow these types of dogs unfortunately. I don't think I have mets to my ankle but I meant I hope it isn't like liver mets or something like that. I know liver dage can cause ankle swelling but didn't know if it meant cancer. I've read Dr. Google too much because I haven't been able to sleep much because of all the stress lately. I've been worried about a heart issue possibly from chemo, kidney issue, etc. I just think that if it was just normal fliud retention that both ankles would be swollen instead of one. I hope to find something out on Monday.
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It's a beautiful day here in paradise. There's not a cloud in the deep blue sky, the mountains are covered in snow, the lake is sparkling and the blossoms are starting to burst. Just three days to the start of spring. Makes me so glad to be alive.
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Hi everyone,
I'm not new here but forgot password then I have to re-sign up.
I am over 3 years out from diagnosis. I just want to let the newbies know there are a lot support here.
This place was my favorite to strengten my soul during treatment. Thank you
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Thank you, Nanuan!!
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Thank you, Nanuan! And Congrats to 3 years!!!
Arlene
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Meadow - I'm so very sorry for the loss of your beloved horse. Sending you big hugs. I'm also ecstatic for your cancerversary, so sending big hugs there too!
Luv - I'm sorry for all you're going through with your husband. I hope he will compromise with you and understands how important it is to you to stay near your medical team.
LillieRose - I was in EXACTLY your position! I was all set to do rads, but then I had a PCR to chemo and my rad onc, along with 2 additional second opinions from top university hospitals, told me no way. They said since I'd had a PCR, that reduced my risk as much as rads would have, so the risk of rads wasn't worth it at that point, especially since I was young. It was an agonizing decision for me since I was very aggressive in my treatment and wanted to throw the kitchen sink at my tumor. Not doing rads felt like I was leaving something on the table, but in the end, I decided to listen to the experts and I didn't do it. Sure it still crosses my mind now and then, but I'm at peace with the decision. PM me if you have any questions about all that! I'd be happy to share any further insight I was given!
Congrats to all the cancerversaries here!! Love seeing that news!!
Hello to all the newcomers. I'm sorry you're here, but this is an amazing and supportive group of women.
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Carolina Amy, I have been very interested in reading your updates from your consults at UNC and Duke. I have triple negative BC also. You probably remember some of my posts as I am the Charlotte lady. I have followed it seems the protocol that the MO's from UNC and Duke have given you. I wanted my cancer out of my body the day I found it was there. Didn't consider neoadjuvant chemo and it was never suggested for me. I was grateful to get a quite good path report from the lumpectomy with clear margins. I am 63 so my age also probably has some bearing on differences we might have in our treatment. I was switched from the AC dense dose four rounds followed by 8 or 12 weeks of Taxol to the less harsh regimen of 4 rounds of Cytoxan and taxotere. The tumor board was unanimous in deciding this was the best chemo regimen for me. I and my husband worried a little bit about whether this would be enough chemo for my triple negative. He did some research and found some info supporting this as being the better regimen than adding Adriamycin to my cocktail. My heart is in good shape from checking with an echocardiogram so that didn't worry me as much as the increased risk of leukemia or MDS down the road from taking Adriamycin. Also I have ILC and it is Grade 2 , maybe that makes my situation less responsive to chemo in general although I have never been told that by my MO. You can only do what you feel most comfortable with in the long run. But try not to overthink it all too much. It seems that would make it harder for you in the long run and not helpful in making peace with your final decision. I am so sorry about your sister. My heart and support goes out to both of you at a particularly difficult time. Just try and trust that you are doing the best treatment regimen possible for your cancer and then move on from there. Wishing you and your sister the best
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So I have small little issue I'd love to run by you all for your opinion and thoughts. Several months after my BMX I found 2 small lumps near where my original tumor was. They were biopsied, tissue markers were inserted, and both were benign. My BS ended up surgically removing one of the spots, which was just scar tissue, so that other tissue marker is still there next to my implant. Ever since that procedure I've had some slight pulling where she opened up my scar...which again is right near my old tumor. A couple months ago I started noticing some pressure in this area, which has recently been getting worse. I'm constantly adjusting that breast trying to relieve it. It's only painful very once in a great while, sharp and quick, but it's mostly just a pressure feeling. There's no question it's directly where my tumor was. I'm seeing my onc's NP on the 18th to address it, but I was hoping to get some thoughts. Could this just be pesky scar tissue causing issues from the additional prodding around, or would a local recurrence present like this? I truly feel this will turn out to be nothing, but since it's becoming a constant feeling, I feel like I'd better err on the side of caution.
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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.
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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!
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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.
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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
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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.
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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.
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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!
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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
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Hello again
Just to let you know I have solved the problem. Everything is now OK.
Sylvia
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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
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Lisa when I click on it it says not available.
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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.
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Ally, thinking of you- I hope you get in to see someone quickly so you don't have to worry. Positive thoughts!
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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.
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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
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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.
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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.
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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
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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.
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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.
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