Calling all TNs
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Linda (LRM) and Titan. I see our stats are the same. TN, grade 3, 0 nodes and "only" lumpectomy AND you are both 5 yrs out!i just finished chemo today and will start rads in 3-4 wks. Consult with RO 4/30. How has the past 5 yrs been for you? And scares. And additional biopsies or fna needed? I have "lumpy" breasts and have had numerous benign fna and biopsies until this one. Of course now fearful of more bad ones. Mo and BS said lx was totally appropriate for me but I question it frequently but they still stand by their initial rec, there is no indication for mx. I really don't want mx, more surgery that may be unnecessary and I have to believe in my decision and trust my docs and "think positive" (ugh I hate when someone else says that)
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Looking around my garden this morning with tears in my eyes lol remembering the tree, it reminded me of last summer. I brought this beautiful rose bush called Tess (they named it after my dog called Tessa, I'm sure of it). Well some of the roses had finished and I asked the old feller to dead head a few of the roses on the top whilst I was at work. Well, he pruned it to an inch of its life (it was summer for God sake, who prunes in the summer). That same week he decided to take Tessa for an earlier than usual clip as it was hot. When she came back she was almost bare so I consoled myself that at least she matched the rose bush. I suppose when it is my time to go at least I'll go with a smile on me face.
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inspired-my mo said she will look into metformin, she hadn't used it before. She looked up trials and there aren't any in area. Although still could prescribe. She will read the articles and we will discuss next follow up visit which us in 4 weeks. When did you start taking? After chemo or after all treatment was done? I will see RO for consult 4/30 and hopefully start soon after. Port is coming out 5/12! Yea I hate this thing. It's sensitive and the bumps are very prominent and it rubs on some bras and tank tops and I feel like an alien bring in my chest. It worked great the whole time. It did its job well, now it's time to go!
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Cocker- thank goodness our house is pretty new so our trees aren't big enough to trim yet!!
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Lisa:
Congrats on the last chemo! I remember that feeling so well- could hardly believe I had made it to the end of chemo - it was quite rough for me. In answer to your question about the last 5 years, they have been great, other than my two knee surgeries from torn miniscus' in each, lol! Nothing cancer related at all. Of course, it has gotten much easier the more time I have under my belt, but I don't think I will ever be carefree enough to not worry about it coming back. It's not overwhelming though, as it used to be, but I think the fear of recurrence comes with the nasty diagnose. Once I finished all treatment, after reading about the nurses study that was done in Norway or Sweden about triple negs taking baby aspirin and seeing no recurrence over seven years (that's how long the study was),I began and still take 81 mgs. every day, along with my Vit D3 (which was a freaking 5 at diagnose - you'd think I lived underground), and I keep it in the low to mid 60's. Other than that, I really have taken nothing else other than a try at curcumin, but it upset my stomach a bit more than I liked so I stopped it. I am thankful for every new day that I have, and can remember only too well thinking I would never get to 5 years, but I did, and you will too! I wish you nothing but the best, always.
Linda
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Linda-thank you for your response back. That was perfect! Just what I needed to hear on my last day of chemo and with all my underlying fears. I will have to read this over and over again. {{{hugs}}}
Lisa
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Hi everyone! I was just told today my cancer is triple neg. I am having surgery 5/5 with chemo 2 weeks after. I am scared. I made the mistake of looking online at prognosis for this.
I am angry too.
Just want to cry and scream!
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My radiation started last Thursday (I started it a bit later as my genetic result took quite a while to come back). Today I had a routine check up with my BS, and she found a tiny cyst in my opposite breast. she ordered a ultrasound for me, and told me she is not worried but as my medical history, she wants to have it check out. I am so panic!
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Mompv, So sorry you are going through this, and welcome to a club you never wanted to join!. We all have been there, scared, shocked, mad, crying. But there is also hope, support, empathy, sharing knowledge and smiles here. So chin up, you are not alone. Triple Neg is not a death sentence, you can beat this.
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Lisa, congrats from me too. Linda's posts are always so warm and comforting despite all she has been through. She always makes me feel ten times better. I don't think we will ever get over those "what if" days but thankfully they come less and less as time goes on as they will you. It's doing something that you enjoy that gets you through the days (along with mundane chores, but at least we are still here to do those). Fill your days with everything you like (by the way are you any good at gardening1!). When the what if days come keep busy and it soon passes.
Linda a friend of mine used to take aspirin for a heart condition and if he happened to cut himself he used to bleed and bleed before it would stop because his blood was so thin. Does this happen to you.
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Alhusband, good luck to your wife's scan.
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Yes Alhusband, thinking good thoughts for you and the lovely Mrs.
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Jia, If your BS said she wasnt worried, try not to worry yet. We all may have funky bumps and strange spots to check out, that is our job so to speak. but take heart, not all is cancer. Wait till you have more information. It is hard I know! Thinking good thoughts for you
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meadow, thank you so much. I am panic because when I had the cancer bump, she told me it was probably a fibroadenoma :-(.
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Mompv as Meadow said you are not alone. Yep cry, rant and even swear if you need too, anything that will help to get you through this. Once you have a plan your life will take off in a different direction but you can do it. Try if you can to drink at least 2 litres of water every day to flush the chemo through, remember to take your meds on time whether you need them or not (they have some marvellous ones now for nausea etc) and even if you don't feel nauseated it's best to take them as its harder to get on top of it. Eat what you can and what you feel like. I used to eat a lot of melon because I found it was light and very refreshing but the only day I wasn't very hungry was the day of infusion. Other than that I ate as normal. It's always better to have something in your tummy. I did suffer with constipation and my oncologist gave me coloxyl and senna but the senna in it gave me tummy pains so she have me a script for just coloxyl which I took the day before infusion and for three days after. The third day after treatment I would start to get fluey symptoms and you will soon find which days will affect you more. Try to rest as much as possible fitting in a little exercise as well if you can even if its just a walk around the block. Once the fluey symptoms went (usually on the third day after they started) I felt on top of the world and felt as though I had accomplished something which of course I had. If you have hidden veins such as mine you may be advised to have a port placement. This was a God send to me, no more needle sticks. It's a bit sore after you have it in but if you use an EMLA patch which numbs the area you won't feel anything other than a little push when the time comes. I won't say having chemo wasn't gruelling at times and it certainly tests you but you will be surprised at how quick the weeks go by and you will soon have it finished. The other ladies on here will come on I am sure to offer you their tips that will help you. Just keep in you mind that you can do this. One thing I suffered with was hiccups but I don't know why and because they didn't last long I never bothered to question it. If you have any symptoms at all that worry you contact your Onco or breast cancer nurse for help. As Meadow said this is not a death sentence. Special thoughts to you and warm hugs.
Jianchi so sorry you have more worries but try not to panic if you can. Your BS seems to be on to it and doesn't seem to be concerned. Sending you lots of prayers that all will be well.
Cat thinking of you and hoping you feel better today. Warm hugs.
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Meadow you are right that is our job (from now on).
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mompv- crying, screaming and anger are normal. I've said that tears shed makes room for strength to enter. TN is not what it once was. Look at the post above from LRM216 and Titan. It's all scary. I didn't know I was TN and IDC until after surgery for lumpectomy. Keep talking and posting and reading other posts here. Join a may 2014 chemo thread and also april chemo thread too to see what's ahead. You'll find practical info, good questions to ask your doc and so much more. Hang in there and just take one day at a time
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cocker, you are always very comforting. All I can do now is to hope for the best. Thank you!
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mompv, wish I could give you some positive advice as others, forgive me as I am in the middle of a cyst scare myself. Hope things get better for all of us.
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Lisa - I like how your MO is going to take some time to read the information you gave her, please share back what you learn! Did you also show her that one article you alerted me to last week? I'm very interested to hear if she thinks that is concerning or not.
I started Metformin well after treatment ended. I didn't know about it any sooner.
MomPV - I agree with Lisa! TNBC prognosis is not what it once was - they know more about it now and they understand what treatment is most beneficial these days. But even with saying that, I have come across several long-term survivors on here and many are past 5+ years. There is also a member by the name of Noni Jones who is over 25+ years a survivor of TNBC. You can search for her name in the search field and read her posts. She drops in once in a while to remind us all what is possible!
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To all that are waiting for scans/results....Repeat as many times as you can...IT'S NOTHIN' TILL IT'S SOMETHIN', IT'S NOTHIN' TILL IT'S SOMETHIN', IT'S NOTHIN' TILL IT'S SOMETHIN'.
Like Cocker said, try not to let the fear rob you of a piece of joy. Do a little something that can bring a smile to your face. Hang in there,ladies and gent. We get it.
And for you new gals, add me to your list of ladies that are still here and doing very well.( Node positive with a nasty path report) My 5 year mark is next month....I am going to visit my Navy son to celebrate. And when I get home I am gonna party my fanny off!
Grateful for a wonderful Spring day with warm temps and a nice rain this afternoon.
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jianchi-we have the same stats. Lx on left for me though. Recently had new/different lumps felt in r side that have been looked at before and told cysts. Was in middle of chemo (I'm done as if today). Us and eventually core biopsy done in these changed lumps. Came back benign but then developed hard painful lump in same area 3 weeks later. Again us and visit with bs. Told prob hematoma in biopsy site. It had gotten much smaller and less painful so I hope and pray they are right. Will have another us next week to check size again. I have lots of benign cysts in my breasts and my mo told me once tested and benign they can't turn malignant but a new one could be so I'll have to keep checking them if I get new ones. She said I may never have a new cancer after this one but of course now have to be very diligent so good to be checking.
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A big big thank you to everyone!! I feel more positive this morning.
I have been on the April chemo group. They are a fun group as well and will join the May group before I start. But surgery first! Just one day at a time is what I need to do!
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Mompv, welcome. I'm glad you have found the thread for your chemo group too. I started chemo last September and joined the chemo thread group for my month.....it was one of the best things I ever did in terms of support. I think almost all the articles about TNBC make it sound like a death sentence because they are trying to get the reader's attention. What they really mean by the words "poor prognosis" is that other types of breast cancer have on average a better prognosis for the same stage. I didn't want to talk about the actual statistics for a long time because I was so darn scared of those words I kept seeing in articles. After I asked my MO about my actual case and the TNBC statistics for my particular stage, I actually felt very relieved. They were much better than the articles had lead me to believe.
The initial days (and months) after a diagnosis of TNBC are very upsetting for many of us. I personally believe I had the equivalent of PTSD for at least the first two or three months. Getting your treatment plan in place and actually beginning treatment makes things better. It's a long road, with a lot of steps....but each individual step is very doable.
Lisa, congrats on finishing chemo! It will take a week (or two or three depending on the chemo) before you actually start to feeling better each day rather than worse, but it does happen! I think the day that I popped up out of bed and walked to the kitchen to make breakfast and didn't feel like I was dragging myself there was one of the best feelings! All the little things we used to be able to do without thinking come back bit by bit....but now we are so grateful to be able to do them again with relative ease. It's nice.
Jia, I hope you get your results quickly. Waiting is tough. Like Navymom says, it's nothing until it's something. My mantra on things like that is "I'll cross that bridge when I come to it, and it's not there yet." I have also learned to trust my MO and her judgment on things.
Today is day #16 (of 33) rads for me. It's going good. I can feel the rad fatigue, but nothing like chemo. I'm just really concerned about my arm and the possibility of lymphedema since I also had an ALND. I've been keeping it elevated a lot and cut back on exercise involving that arm until after rads are over. I'm still walking and doing light strength training and stretching. I saw my RO yesterday and he agreed with me that that arm looks slightly larger than the other one. He will send me to an LE specialist at the end of rads for sure and said to let him know if I want to go sooner. I did PT with the LE specialist right before rads started and at that point I was fine. I know I want to get a sleeve for flying and for the long distance bicycling I want to do. I should probably investigate how long it takes to get a sleeve once I get measured for it.
Wishing everyone a good, peaceful day.
Hugs,
Kay
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hey all..
thanks jan for the joke...its nice to have jokes etc on and off
alhusband: do let us know the scan results. sending positive thoughts
navymom: i like your mantra..its nothing till its something!! I do the same since there is joint pain i am going though which my oncologist says is because of taxol. If it doesnt go away by june he will do a scan...i really hope its nothing.
jianchi: i hope its nothing. And we share the same features too...even my ultrasound scan said its fibroedenoma. Did your path report mention something like "medullary features "too, since the tnbc who have medullary features typically get dismissed as benign fibroedenoma in the scans.
my port is still inside. MO said he will keep it inside me for the next 4 years.
Mompv: welcome to a group we never wanted to be in. your surgery and chemo dates are fixed is it.. and chemo is 2 weeks after surgery. Your doc is sticking to the most ideal schedule..i am sure u are in good hands. which stage are you in now?
Do let me know if anybody gets more information about Metformin. I discussed it with my MO and he said that chemo along with metformin is a very aggressive combination and he uses it for recurrent settings. He said he will not prescribe Metformin tablets for me post treatment since it will trouble my insulin levels... I will plan to talk to another oncologist and ask him if I can get Metformin. In the meantime what do your doctors say Simple, Jianchi and others who are just about to complete treatment.
love to everybody!
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Congrats on your last chemo Lisa! Being done with chemo is the best thing ever!
As far as the last 5 years went they went by fast! As far as health issues so far so good...took up jogging which is fun.
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Simple: I got an order from BS for a sleeve. Took it to the pharmacy/medical equiptment store in town. The gal there measured me and picked out the proper size for me. She even filed it with my insurance. The cost was about $70. and I ended up paying about $7 out of pocket. I only wear my sleeve when flying. I try to put it on about an hour before and leave it on about an hour after. So far I have not any issues with LE.
BanR: I asked my MO for Metformin, too. She would not order it because she felt she needed the studies to be closed and the data released. I went to my PCP with several different articles in hand regarding Breast cancer and Metformin. He ordered it on the spot...Even wrote the script for the dosage that I requested....the study dose which is 850mg twice daily. It is a very old and cheap medicine. Most of the SE are GI related. And you must start it gradually until you can get to full dosage. If you have done your own research and feel that you want this medicine....go for it. Squeeky wheel gets the grease. When I had my next appointment with MO I told her that I asked my PCP for metformin and that I was currently taking it. She was happy with it. No biggie.
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NavyMom, I'm jealous! I went to my PCP with studies in hand and she would not give me an RX for it! I asked her to keep the studies to go over at her own time and she refused! My glucose levels go between 5.8-6 which is almost prediabetic. I'm really upset by this and feel she isn't working WITH me but it's almost impossible to find a PCP here, :-(
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BanR - My story is similar to NavyMom. Onc said I didn't need it, so I went with research in hand to my PCP. He reviewed info and then told me "he had no problem prescribing it for me". I did not have any problems starting right in with the dose, but I had researched about the gi issues beforehand and I decided to request brand name. Not all places can get brand in, I get mine at Costco. I updated my Onc that I was on Metformin and he was fine with it. There were also some women on here that have had gi issues on generic and some have now switched to brand name. If you are prescribed Metformin and you decide to take generic, research the different manufacturers as there are many. I read SunPharma experienced quality issues resulting in recalls and Teva seemed to be a popular generic brand.
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