Calling all TNs
Comments
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Slowloris: So sorry that you are going through this. Sending prayers and hugs your way.
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What's up Ladies!!!!!!!!!!!!!!! Yup Yup I'm back. I took a hiatus which was very good for my mental state. I see a lot of good news, bad news and new faces/names.
Fighter - yeah girl, pumped to see your update.
Blue, Cat and slowloris - so sorry to hear this and you know we are here for you.
Things are going pretty good. Kids are good, they are pumped for the insane summer fun we have planned. Chris and I are going to st. martin in 2 weeks for 5 days to just be together and decompress from all this bullshit. He also stopped working so we can be together as a family more. We're finally in a good financial situation to afford this. Our whole married life he worked nights and when we had kids it got harder on me. We've sacrificed a lot to get here and are so happy! We have a trip to DC planned, Charleston, Connecticut, Myrtle Beach, Atlanta and the NC mountains.
Now to the worrying part that might possibly bust up all the family fun. I have had a swollen gland/node on the right side under my jawline. Its that gland/node that get's swollen when your sick. My MO says its nothing but i don't believe him. It's been this size for about 6 months, its not hard but swollen. I have my next appointment with him early June but I also scheduled an appointment with and ENT doctor. I want to believe my MO but I'm just not a lucky person. In a way I don't want to know anything and just get through the summer fun but that would be sticking my head in the sand! My MO is so anti-scan so i have to beg, borrow and steal to get one, hence why i schedule an appointment with ENT, maybe he will take me seriously. If anyone has any advise do share
On a positive note my recon is looking awesome!
Missed everyone and happy to be back.
xo - jen
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Slowloris - I'm so sorry for all that you're going through right now. It sounds like your MO is really on top of things and determined to get you into the best trial, which is wonderful. I'm sure this is a scary and stressful time for you. Stay strong and let us know what you decide. You will be in my prayers.
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hugs slowlorris!
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Sending my best thoughts and hopes to you, slowloris.
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jenjenl - go with that good vacation. I'm sending hopes that the swollen gland is nothing the doctors can't deal with quickly and easily.
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Jenjen-- I have a very similar story with swollen neck gland(s). I've been to several docotrs and had many ultra sounds. So far I've had 4 biopsies, with none of them getting enough material to analyze. I'm over due for my 6 month wait and see appointment with my endocrinologist at UCLA. I do have an appointment there for early July. Nobody but me seems to be excited about it. Apparently glands that are so visible on U/S, come and go without logic and scare us to death. Good luck dealing with you glands and keep us posted. Jan
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jen...when are you going to Myrtle Beach? I think we are going in Sept. sometime
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Titan - end of August. We are meeting my brother's family there.
JAN - good info and thats how i feel. no one seems bothered by it but me.
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slowloris and jenjenlj - thinking of you both - lots of prayers you will both get through these hurtles - we are all athletes in the world of medicine!
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Back to work today, still with a flaming cold I cannot get rid of. Just did not want to get out of my lovely warm bed.
Jan/Jen hope your swollen glands turn out to be just like Jan's. It's funny how swollen glands would never have worried us at one time.
Slowloris thinking of you and hoping you get into the right trial. Sending big hugs.
Titan looks like our little bird has flown away again for a while, back to the casino no doubt, but I'm so pleased she is ok, was getting very worried.
Cat and Fighter thinking of you and hoping all going ok.
Have a good day ladies. No need to say keep warm cause I'm sure you want to get cooler with your weather. But think of the ones freezing their butts off in the early mornings (Me). xx
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All this discussion of swollen neck nodes is good for me. I also have issues with a neck node. I have other nodules on my thyroid that have been biopsied and I can't even feel them. They are being followed up by the endocrinologist, but I also have a node higher up that was swollen during taxol. It went down during AC and stayed down for several months. Now, it is back. I'm starting to believe that it's back now because my allergies are popping up this spring. I hope that is all that it is. My first checkup with the MO is in one month. If it is still there then, I'll have to talk about it with her. Knowing other people have these crazy neck nodes actually helps me feel better. I tend to think it is okay, but after having TNBC, it's easy for my mind to go off into "worry-land" with it.
I finished rads 4 days ago. Whoo Hoo! Treatment is done.....I hope forever! My skin held up amazingly well. The day after rads were over, I felt really exhausted. (I can't remember if I had posted here that I was also in the hospital for 3 days over Mother's Day weekend with a small bowel obstuction....totally unrelated to cancer.) I know I am recovering both from that hospitalization and the cumulative effects of the past nine months of treatment. By yesterday, I was feeling so much more energetic. It's exciting to be looking forward to the possibility of having a "normal" life again. Just having the energy to cook a good dinner and putz around in the garden makes me very, very grateful.
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to simplelife4
Congratulations on completing the treatments. Yes, life will get better and better. It's wonderful how quickly the body can recover from all the stuff you go through.
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Simple, congrats on finishing! Doin the happy dance!
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Yay Simple you did it
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simple - finishing treatment is a milestone!, I finished mine just one year ago, and it does get better with passing time. Allow your body to rest when it needs it . Congratulations and take great care of yourself!!
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congrats simplelife - hopefully now life will be simple for you!!!! Stay strong!
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hi, I haven't read through all this yet, just the 3 most recent pages. Unfortunately i just found out a couple hours ago that I am a TNC person. I am so happy to see there is a forum to learn more "real" information about this.
Last Tuesday I had to go back for a redo of my mammogram. There was an area from that they found which suggested the need for a biopsy. So Thursday I had the core biopsy done. Friday I was told I had Ductal Invasive Carcinoma and then today learned I am Triple Negative. A bit too much information, too quickly, but I guess that's best. I will have an MRI Wednesday or Thursday. I haven't met with the surgeon yet, won't be til end of June or first part of July. This wait may kill me as I try to stay positive, believe me I cried Friday Saturday and then this afternoon was more like a wailing session. I am told they will do a lumpectomy and look at nodes, then have chemo 4-6 weeks later for 4-6 months and then 4-6 weeks after that start radiation. There is no breast cancer in my family. Never even had a thought I'd get this, and then to have one so aggressive. Mine is smaller I guess, 6mm, so I'm hoping that is a little brightness in the situation. Anyway, I will be visiting you often and will really love having you as a support group.
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Hello, I'm not sure if I have posted in this portion of the board before, so hi! If I have, you can blame chemo brain lol. I was diagnosed on Jan 2, 2014. I just had my 9th Taxol this morning. Three left and then on to mastectomy (no recon) in July. For the first time this morning I told my onc I was ready to hear official statistics as far as chances of recurrence. She had asked me earlier if I wanted to know and mentally I was not ready. Today I was. She told me that taking in to consideration my tumor characteristics, disease stage and treatment, my chances of a recurrence were around 15%. That seemed low to me! Does that seem realistic? I had been scared to ask all these months and if this is accurate, I wish I would have asked sooner!
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Hooray SimpleLife! Time to celebrate and move on.
Kellya, sorry you are here in the forum, but you will find good information from many others here. Hugs!
Belleb, hang in there!
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Thank you all for the well wishes. I'll keep you posted on my treatment path.
Simple, YAHOOO!!! I'm so happy for you! Time to get some rest, and normalcy will return shortly. Stay in touch with us.
Kellya, welcome to the boards. You will find many wonderful women (and men) here to help you with questions and just for support.
Belleb, as far as recurrence rates, my MO also suggested a high "cure" rate. She gave stats on each progression of treatment, and in the end, if i had chemo, surgery, and rads, I do believe she said around an 85% chance of cure. So the odds are in your favor. Hold onto that!
Jen, I also had a lymph node that showed up in my PET underneath my right jawbone, under where my wisdom tooth would have been (they were removed years ago). My MO didn't think it was anything because usually if the nodes are involved, they travel up the chain of nodes from the breast, up the chest and medialstinal, then the neck and head. But because my cancer seemed to follow no rules, we had a fine needle biopsy done. It showed no cancer cells, but was reactive (showed some slight differences from normal). This could have been due to inflammation and or infection. At the next PET (3 mos later), no evidence of uptake. So, even though I have metastatic bc, and my thoughts went to that dark place, it was nothing to be concerned about. If it gives you peace of mind, ask for a fna biopsy, but My thoughts are its probably just a slight reaction to any # of common ailments (inflamed gums, allergies, etc.).
Busy week: Cardiologist Wed, CT of chest and abdomen Thurs, Then MO on Fri. Hopefully, a plan will be put in place then. I'll Take all of the good thoughts you can send my way!
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Hello ladies. I had to take a break for awhile, but I need your prayers and good thoughts! I am struggling so much with fear of mets! I have been off my anxiety meds for a few weeks because I didn't want to stay on Benzo's long term. I was on Klonopin. I cry every day, sometimes hysterically as fear of mets consumes my thoughts. UGH! I am lucky if I get four hours of sleep. Then I'm not even tired the next day. I am so scared of every little thing. For example I had a head and chest cold about a month or so ago and had a bad cough. My husband caught it first then I had it. I coughed so much that my rib area started hurting but my doctor thought it was just inflammation of the cartilage and my MO thought the same thing. But I was in fear of rib mets. I still have a slight cough off and on but my doctor said that a lot of people are having the same problem due to the high pollen counts here in NC. I saw the MO for my three month checkup two weeks ago and he thought I was doing well. I told him I feared brain or liver mets because I've had headaches (sometimes bad), heart palpitations, lightheadedness, decreased appetite, upset stomach, trembling/shakiness, etc., but he really thinks it's due to extreme anxiety, crying fits, and stress. Sometimes my head hurts on one side then it'll switch sides. I just pray he is right. It seems like the further I get out from treatment the harder it is. The Triple Negative thing just scares the heck outta me. I try to hang onto the decent prognosis my MO gave me (78-81% chance of no recurrence with surgery then chemo), but I've read too many negative stories. The surgeon and RO told me I didn't need radiation since my lymph nodes were negative but I even question that since I've read where some have had both regardless of node status. I also question whether I should have had chemo first then surgery. I know I can't go back and need to move forward but as you all know it's hard sometimes. Everyone says that the beginning is the worst but for me that was easier. I guess because I was in shock and didn't know as much about TNBC as I do now. I am seeing a therapist but it doesn't seem to help. My MO doesn't think a support group would be helpful due to some that talking about getting scans, recurrence, etc. Anyway, thanks for letting me vent. I don't mean to be a Debbie downer!
Slowloris, keep us posted. Praying and sending good thoughts your way, and to the other ladies as well. Cancer sucks. Oh how we all wish they would find a damn cure!!!!
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Luvmydobies - If you have concerns regarding the need for radiation (or other concerns), you could pose the question to the docs at Johns Hopkins at the following link:
http://www.hopkinsbreastcenter.org/services/ask_expert/
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today is my 6 month ck with the MO...nervous to say the least...small lump in between the recon boobies right on the sternum. I will get results of the bloodwork --she does CTC and CA 27-29 and I am sure that she will want an ultrasound on the lump. Will let you know how the appt goes!
Mags
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Thinking of you Mags!
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Kellya, I'm glad you found this thread so quickly. I know you are in a state of shock right now. We all have been through those first few days when everything seems so unreal. As scary as everything seems right now, hold on to the fact that your tumor is REALLY small. They caught it early! That is good. I just finished treatment (chemo, surgery, rads) last week so all of this is fresh in my mind. The next nine months will be hard, but you can do it. You are doing a wonderful thing by reaching out for support. I see you live in Illinois. I just moved from Barrington, IL to Tennessee (a month before my own diagnosis). Where are you going for treatment?
Slowloris, I'll be thinking of you this week as you go through so many tests. You sound good. I'm guessing Friday can't come soon enough for you to find out what they come up with for a treatment plan. Sending you many, many positive thoughts.
Mags, wishing you the best with your checkup today and the ultrasound. Please let us know how it goes. (((hugs)))
Luv, the struggles of the "dark place"......It's no fun at all being there. I think we all have our moments there, it's figuring out how to get out and move on that can be so hard. My mind also leaps to "what if's" with each physical symptom that I have. When I find myself sliding into the dark place, I try to focus on all the things that are going right in my life right now. I remind myself that the odds are in my favor that everything is going to be okay. Like other people have recently posted, my MO has also told me that my odds of recurrence are only 10 to 15%. If I was at a casino, I would LOVE those odds of winning! Also, another thing to consider.....each and every day that passes without a recurrence means our chances just got a little better of making it through. It sounds like your anxiety issues are much greater than average. I hope you are able to find some relief somehow. I truly believe that many of us have some degree of PTSD as a result of our diagnosis. Take care of yourself. You are worth it. I had to leave a TNBC facebook group that was really bringing me down so I really understand your need to take a break for a while. (((hugs)))
Thank you, everyone, for your congratulations and good wishes on completing my treatments last week. I'm already noticing an increase in my endurance and a decrease in fatigue at less than seven days out from the end of rads. I'm so happy to see little glimmers of "normalacy." Hubby and I are looking at vacation plans now that medical appointments aren't dominating my life! We are both retired. Hubby retired a month before I got diagnosed and all our vacation plans got put on hold with my diagnosis. Yesterday, it suddenly occurred to me that we could pick up and go somewhere THIS WEEK if we wanted to! The beach is calling me.
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Hi Luvmydobies,
I've got two dobersons myself (Bismarck and Wilhelm). I do not have a husband or kids. I had a double mastectomy and start chemo next month. I just wanted to share with you how well I understand the fits of crying (sometimes near violent). My boyfriend of 10 years also just moved out as the result of a relationship with another woman....so I'm not sure how much of my anxiety and depression is cancer related and how much is the loss of the person who inspired confidence in me and a source of happiness.
I see a personal therapist as well and often wonder if it helps. I never saw one before, so I have no Half-Life to compare. No matter how much we discuss taking things one day at a time and accepting that none of this is my fault, I am still overwhelmed with thoughts of what the future may or may not hold. Group therapy sounded good at first, but then I imagined listening to everyone talk about how they fought for the sake of their children and were so thankful for the support of their husbands and got nauseous.
My dogs might think I'm nuts...but they let me cry to them and I don't feel I'm putting a burden on them. Sometimes I just sit on the couch with their heads in my lap and it helps. They live one minute at a time...forget about one DAY at a time...look how happy they are! I just keep telling myself to be more like a Doberman!
P.s. I got to the Abramson Cancer Center at Penn. They did not recommend radiation. I was told current studies are showing radiation is not as beneficial for triple negative bc. I was happy to hear that because one a spot is radiated, it can never be done there again. I'm only 36... I'm going to save that opportunity for radiation in the event I need it for something else in my many years to come!
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Doc is very very sure that the spot is just necrosis...just to be safe gonna ultrasound it. Blood counts were perfect!!! WOOOO!!!
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Simple,
Congrats!!!! So happy for you.
Mags,
Goody on the blood results. Am sure we are all rooting for necrosis. Let us know final results.
I had my blood done yesterday prior to my appointments on June 2nd & 3rd. My 6 month checkup with MO & BS. Only situation I am having that I know about is bad arthritis pain in hips, knees, ankles & wrists. Those are my bad areas. Anyone know of good pain meds that don't make you loopy? Or any herbal additives that help? I trying Bone, Flesh & Cartilage but it is not for continuous use. Along with Glucosamine & Chondroitin with MSM. Need all the advice you all can think off.
Take care to all.
Beautiful day here. Sunny & breezy!
Marsha
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Thanks for the encouragement ladies! I'm trying to take things one day at a time but obviously struggling. I get really frustrated because my MO says they don't do follow up scans after treatment unless there's a symptom. I think to myself if I only had a scan that showed nothing then I could relax a little. Then there's another part of me that's scared to ask for one too. UGH! Then there's the whole women under 40 at diagnosis tend to have worse outcomes than older women. I was 36 at diagnosis so that scares me! I also haven't been eating the best because I'm eating what I feel like right now, such as hamburger's, pop tarts, sandwiches, and after I eat I'm like oh crap, I hope I'm not gonna make the cancer return! My MO said there's really no hard evidence saying food causes cancer or recurrence but to eat those things in moderation, but lately it hasn't t been in moderation so I'm nervous. Anyway, Mags I'm so happy you got good news today! And Rad that is so cool you have two dobies. I have three! It's a little much but I rescued one from the doberman rescue where I do volunteer work. They're the best aren't they? And so misunderstood. They are just big babies and lap dog's. I love how they like to cuddle with me and each other on the couch.
Thanks for letting me vent!
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