Calling all TNs
Comments
-
Three cheers for Arthritis!! That is so funny to say. Marsha I am so happy for you that it was not the C word. Yay! Doing happy dance for you.
Anita
0 -
My thyroid biopsy all clear. Now on to treating the hyperthyroidism.
0 -
I have to say if anyone came across this board that had no idea why we are all on here would think we are all crazy for congratulating someone with arthritis!! Hooray for Arthritis!!!
Congrats to everyone for their milestones!
Fierceblue - I hope you are hanging in there. Thinking of you!
Have a great weekend everyone!
0 -
Truly is weird to celebrate arthritis. But as to chemo giving it to us, I'm not so sure. It may speed up the inevitable but give I don't think so. Reason for my thoughts is I only had 2 A/C treatments. No Taxol at all.
My celebration is somewhat twofold as after having to stop chemo I was given a 50/50 chance. So for me every day is a huge gift. If I could have completed the routine my chances were listed as 89%.
So I lost the percentage war we all look at in deciding to chemo or not to chemo. I tried & knew it was iffy from the start with my allergies.
So I can only commiserate with you on waiting on tests & how A/C can get bad, losing hair & bouts of depression & fighting the depression. Never had taxol experience. Friend did & still has numb feet ( 3 years later).
We keep fighting this battle as it can determine the outcome of the war for us!!
Have great day all,
Marsha
Fierce, hang in, I'm in your pocket. Good luck on next round of tests.
0 -
Scoobydoo, congrats on thyroid! I've had problems with mine since chemo, but I'm hypo.
0 -
I'm new here and here's my story. I was diagnosed in November 2013 at the age of 41 with TNBC medullary type stage 2A node negative. They wanted to start chemo ASAP so I had a lumpectomy in November and started chemo in December. I had 4 rounds of AC 2 weeks apart and then 12 weekly rounds of Taxol that I just finished up with. I am scheduled for a bilateral mastectomy with reconstruction in 2 weeks, and then the waiting begins which is what I'm having a hard time with. My doctor never did any kind of tumor marker tests during chemo to see if it was working and now he told me he doesn't do follow up blood work or scans. He also said if it were to come back and metastasize that no tumor removal would be done and chemo could be done to prolong life span. I'm having a huge problem since I have no idea if chemo worked in the first place and now he'll go by how I'm feeling when I see him. Well I felt fine when they found my tumor on the mammogram so I'm afraid by the time they would find anything it would be too late. Is no follow up scans or labs common practice for anyone else or should I be looking for a new oncologist? Any help or advice would be much appreciated since I'm new to all this. Thanks!
0 -
Stage
What a jerk that doc is! Pet scan, bone scans, lung xrays, and blood work cbc with tumor markers. Since I finished treatment, I have had 1 pet, 2 bone scans, 2 xrays, and blood tests every 6 months. With recurrence no more chemo, really? I say baloney and find new doc immediately!!!! Good luck!
0 -
Stace02,
My oncologist does not do tumor markers and does not do scans unless the patient reports symptoms. I asked about this and she said if it metastasizes to distant organs, what determines your remaining life span is not when the spread is discovered, but rather how well your spread responds to treatment. A larger met(s) that was found later can still shrink to the same size as a smaller met. A smaller met that is found earlier but does not respond will mean a shorter life span...it will keep growing. With earlier stages catching it sooner makes a bigger difference because the objective is to keep it from spreading to distant organs.
This makes sense to me except in the case of local recurrence, when time still matters. But in my case they would find a local recurrence by feel...I had a BMX.
0 -
Stace02 - I too do not have any follow up scans, blood work, etc. I am a year out from having TNBC with a double mastectomy and reconstruction. I was also told unless I have any complaints for a two week stretch there is nothing they can scan for. They feel with the chemo and the lack of real breast tissue if it spread somewhere else they wouldn't know until I complained about some pain somewhere. I understand their logic but am not comfortable with it. You have to know your own body but with reconstruction you have to understand there is a whole different normalcy you are not familiar with so with every twitch and pull from the reconstruction I think it's the worse. I have been to all three doctors, breast surgeon, plastic surgeon and oncologist and they all told me what I am feeling is my normalcy. Hard to understand but it is what it is.
I do know our doctors have our best interest at heart and I have to believe what they tell me. I live in the Boston area and go to Dana Farber and Brigham Womens and feel I am in the best hands and I don't question what they say.
0 -
Hi LP. I am just curious: you are stage 2, but DCIS? Did you have some IDC as well?
0 -
Great Idea!
Pat; Age 66 Diagnosed Nov. 2013 with Paget's Disease. After biopsies, found small tumor less than 2cm which turned out to be TN. Had single mastectomy April 15, 2014. No Dr. was in too much hurry to get on with this surgery and I was permitted to visit my son in Hawaii for the winter. Now I am just finding out that TN is a fast growing aggressive cancer, and will be seeing an oncologist at the end of this week. Am not a fan of chemo, and depending on the statistics, may opt out of any recommendation for this course of treatment. Anyone else decide to forego radiation and chemo? I've made lifestyle changes promptly after being diagnosed , like daily juicing, Beta Glucan, Laetrile, Modified Citrus Pectin, Transfer Factor, D3, Liposomal Vit. C, Grape Seed Exract, etc. Hoping this regimen will get me out of this mess too. I figure, since the surgery got the Paget cells and the small tumor, what exactly is the chemo or rad targeting? Any rogue cells that traveled could be taken care of using the Citrus Pectin and Cimetidimine( Tagamet). Why poison my whole system at this point? Anyone else feel this way?
0 -
stace02 - I do not have any scans, blood tests etc. - however, I do see my oncologist every 3 months and she does a thorough exam of breasts and lump nodes. As with others, unless there are symptoms - no need for further testing.
0 -
Welcome Seal and Stace! You will find a wealth of info and support here. Seal, I have a friend who is a doctor who did approach me with the regime you are following now, he is vegan, knows all the current natural cancer strategies. But my cancer is particularly aggressive, and I knew if I did not go conventional treatments I would not kick it. It took everything medicine has to offer to get my cancer out of my body, and I have no regrets for using chemo and radiation to kill it. Yes you are poisoning your body, yes there are nasty side effects. Yes, I am cancer free, no evidence of disease, or NED as we like to call it. If I did not go this route and could not kick it with natural ways I would have always regretted letting cancer grow when I could have used stronger means to fight it.
But that was my personal choice as yours is for you, and we all must use our inner voice. Researching information has become so much easier with the internet. Stay with us here, keep us informed on what and how you are doing.
Stace, I finished treatment April 7, I will have a scan in 3 months. Again IBC is my diagnosis, it is aggressive, takes aggressive means to kick. My reoccurance rate is high for first 5 years, then really drops and is not so common after that,m so I will be followed up on closely until I get to that milestone. I would want a scan at some point, I think you should have one at some point just for peace of mind. Stay positive and do not let fear get you. Meadow
0 -
Stace02 I would still look around at other docs. I just don't like the sound of yours. Are you comfortable with him?
0 -
Hi Placid44 - I am not sure of the terms without looking at my path reports - IN 2004-5 I think it was Invasive Ductal Carcinoma stage 2 - my tumor was larger than anticipated at first so chemo and rads - the first round of chemo I think was cytoxyn and something else - in April 2013 TNBC with chemo - cytoxyn and taxotere. I was allergic to the taxotere so they had to desensitize me to it because it was my only choice for the TNBC and would give me a better chance of getting rid of the chemo. I am not sure I would agree with others forgoing chemo but those are personal decisions.
0 -
Stace02 - I did follow-up with ONC every 3 months and mammo every 6 months. I am now on a yearly mammo (unless they see something). I am now 5 years out from diagnosis with NED. I also was diagnosed with melanoma (due to radiation therapy) which was found under my armpit on same side as BC and rads. Because of that I have a CT or PET scan every 6 months and NED for melanoma as well.
0 -
Hello Everyone!!
I see some familiar ladies still here and many new ones. Titan, Annie, Fighter, Luah and others, you might remember me. I am very sorry for not checking in for many months now. I am still doing well and in fact this coming August, I will be 4 years out. The last mammogram went well, nothing to report. I haven't done an MRI for several years now. I have tired to forget this experience, although it can never be forgotten. But I might admit that I have a psychological issue with it, maybe that is why I don't visit this site often. Fighter - I am so sorry to hear of your recurrence. Actually, I could not believe it. I remember we were diagnosed around the same time, or maybe you were just a little earlier than me. Due to my eye problems which continues till today, I am not reading much, therefore, cannot catch up with all the posts, but am hoping that there were no other shocking things happen in my absence. If we lost anyone, please do tell me. Wishing each and everyone of you a bearable journey wherever you are at, and am hoping that me being alive 4 years after diagnosis gives you some hope and inspiration. Lots of Love and Hugs to each and everyone of you!0 -
Thank you Lovely, thanks for sharing with us. It helps so much!
0 -
Well ladies have you ever seen one this size (I'm talking about a tater you goofs lol)
0 -
Lovelyface as if we could ever forget you love. So good to hear from you and that you are four years out. Just wonderful news. You were on here when we lost Laurajane, MBJ and Suzie and I think you know we lost Michelle (LUVring) and Karen (OBXK). Both so very much missed. Also we lost dear Naan but there are still quite a lot still here thank God. Never hear from Riley so suppose she is in the land of the living, at least I hope so. BAK and Linda still post as do the ones you mentioned. Sorry to hear you are still having trouble with your eyes. I am too. Chemo stuffed my left eye up which constantly waters and affects my nose which makes me cough like mad but I guess its a small price too pay. Please keep in touch Lovelyface the girls on here love to hear all the success stories and you sure are one of those. xxxxCat how are you doing. Any news on the trial yet?
Thinking of you Fighter and Bluebird.
Hello and welcome to all the new ladies. Let us know if you have any concerns we may be able to help with and good luck with your treatment.
I too had invasive breast cancer, Stage 3a, Grade 3 with xtracapsular extension so Surgeon took all my nodes at surgery. I take my diagnosis date from date of surgery not from diagnosis as I still had the cancer then.
Have a good day ladies. Hope you get a snigger at the joke.
0 -
Thank you dear Annie for the lovely welcome, I have missed you girl. And thanks so much for filling me in on the news about losing our two very lovely friends. I was tuned in when Karen (OBXK) passed but was not aware of Michelle's passing. That is a huge big shock, trying to hold back my tears. It is not fair. Annie, so sorry to hear that you also had an effect of chemo on your eyes. You know my eyes were troubling me so much that I went ahead and retired from my government job at age 56, last December. I didn't mention to anyone at work that it was because of my eyes that I was leaving. I just pretended that it was my age and time to leave as pension was waiting for me. But in reality I was suffering not being able to do my job anymore due to my eyes not behaving with the computer screen all day. It was all for the best anyway.
All you ladies, get better quickly, look forward to life and retirement, because retirement is great, it is awesome, you get to go in the sun during the day, you get to sleep in your warm bed longer and smell the roses outside. God is giving me this chance of a lifetime right now. While the retirement budget is very tight, it is awesome that I am able to do within that, and feel contented 100%. So thankful to God, I thank him a ton of times each day, for everything that he has given me. Imagine this - would I have thanked him like this in 2010 when I was diagnosed, and then the awful surgeries and during treatment? No, I was in a different world back then. So there is an awesome life waiting for you all, ladies, trust me, these bad days will be over, it is definitely not the end.
Annie, honey, I still have one more year to go so I am keeping my fingers crossed. I am also counting my days from the date of surgery when the crap was taken out of me, which is August, 2010. I know for sure that it was out of my body after the surgery and that chemo was just for extra precaution. Recently, my doctor cousin and his wife visited me from Sydney, found out she also had BC in 2010 round about the time I had. Shocking, it is all over the world, not leaving any continent alone.
Best wishes toyou all lovely ladies. May God give you strength and hope. Sending you love and best wishes!
0 -
Lovelyface I am so pleased you have given up that darn job at last. Yes money might be a bit tight but think of all the lovely things you can do in your country that are free. Lovely walks, watch the sunset and know you don't have to get up early so it doesn't matter. Sit in the sun, read a book. You lucky girl. You never know you might be able to put a little bit aside and come and see your mum in Auckland (and me). There is no way I would let you come knowing you were only 3½ hrs away and I couldn't see you. I think we were all in a different world back then Lovely but thank God we had each other. My dear old feller has now given the café to my eldest daughter (my other girl is an Accountant). He goes in to help her for a couple of hours each day but he was getting very tired with the early starts so I am pleased. Not only that he is here to cook my dinner again yay. You never know it might be my time to retire next, wishful thinking. I do feel tired now towards the end of the week and I'm so glad when Friday comes around but I'll see how things go. Oh we still have Navymom coming on. She is getting ready to go and see her beloved son in the Navy and Mags, Jan and Wren come on from time to time. The only one I am really worried about is Kathy. She hasn't been on for a long time. But no doubt she will come tripping in one day (hopefully) with a whole lot of excuses about being at the casino. You keep well Lovelyface and you will make that five years with no problem. Keep in touch. Love you girl. xxxx
0 -
Yep...I'm still here! I have appointment with PS today and then will graduate to every 2 or 3 years. Seeing my MO in 2 weeks and then she will be releasing me to my PCP! She does want me to have a final PET scan. I have agreed to it and at this point just want to get it over with. Just waiting for Insurance to approve it.
Annie, you have such a great memory for who pops in here. My memory isn't worth a nickel. Scares me sometimes. I write myself alot of notes and reminders and lists! Temporarily lost my safe deposit box keys last week. Amazing how much crap you can find while you are looking for something else. I used a lot of bad language that day, too!!!!
My heart breaks when I see so many new ladies here. Hang in there, girls. Things will get better.
Love and hugs to all.
0 -
Ah, it's like alumni week, tuning in here today.
Lovelyface: So good to hear from you. Sorry your eyes are giving you trouble, but how nice you took the leap into retirement and are enjoying it so much! Excellent news. I'm not quite there yet, although I think about it a lot and am planning a gradual withdrawal from the workforce. I run my own business so have been able to lessen my client-load and work on a flexible schedule. During the winter, I took Fridays and several Mondays off to have long weekends for my passion: skiing. Many times when I'm high up on a mountain, I look out at the awesome beauty of nature and say a quiet thank-you for being able to live my life.
Navymom: I know what you mean about memory lapses -- that is one lingering effect I put down to chemo. Glad you're doing well.
And yes, Cocker, thanks for keeping us all straight, and in your heart and thoughts.
0 -
Haven't been to this forum since before all my doctor visits in April. I worried about the mammo, but everything was normal. 2 years down the road since the diagnosis.
Did a half-marathon (walked it) last Saturday. First one I've done since the chemo took the starch out of me. Just a little bit slower than I used to be. Felt good about that, and got LOTS of support from my friends and family when I posted my finishing picture on Facebook. So I'm changing my picture here to the half-marathon picture. Shows off my improved health.
Hope all you folks see improvement every day...good wishes to you all.
0 -
Finally have all the test results in after my passing out episode. All are normal. I had a stress test, a Muga Scan, an Echo Cardiogram and wore a heart monitor to make sure my heart was ok and I had an MRI of my brain. The doctor said he feels there is no need to run any more tests. Thank you all for keeping me in your prayers. I will celebrate being a survivor for 4 years on May 27. God bless you all.
0 -
great news GuyGirl.
0 -
really great news Ellen! Sounds like you have a very thorough Dr!
0 -
Cocker and Lovelyface - just curious about your eye issues. When I am out walking the dog my eyes just water up and tears come strolling down and my nose starts running. I chock this up to not having heavy eyelashes or nose hair anymore from the chemo but my eyesight seems to be going downhill as well - need to get to the eye doctor to check.
0 -
LP- my eyesight has gone downhill rapidly since chemo as well. I imagine some is due to age (44 at DX now 48). I go to the eye doctor every year and my glasses prescription keeps changing- for the worse. I still only wear them when I need to see something up close, but I need to give up the fight and wear the bifocals all the time- even though they make me nauseous. Sucks getting old AND having chemo!!
0
