Calling all TNs
Comments
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Consider carefully before giving up mri. My mammon and ultrasound were all clear at 3 years. At 3.5 when it was time for routine mri they found local in breast tumor which they now think is new not recur. But it was small and would never have been seen without mri
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Oh Ladies, I would never recommend anyone not have an MRI, oh absolutely. My BC was not detected with a mammo, it was a clean mammo, but 6 months later I felt the lump. In my case, it is the MRI. In June I have an appointment with my surgeon, and this time around I am going to ask for an MRI. For me, I just don't want to do it every 6 months anymore. They had placed me in a high risk case because my other side also showed some abnormal epithelial cells, which may or may never become cancerous.
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Thanks for the comments about my mom (the one who had the stroke last year and the decision to proceed with chemo). It was postponed from last week to this week (mostly, because I thought she was getting a cold which she wasn't). Just like last week, I am having second thoughts about the decision to proceed with chemo. One minute I feel confident and hopeful that the side effects will be managable. The next I think about how tired she is right after her hour long physical therapy...until she gets a root beer and a doughnut. (yes, I know not healthy). Or how she is tight after sitting on the couch for a few hours. And try to imagine if she will even be able to stand up on the "tired" days of chemo.
Plus, I mention chemo and that she will feel bad for a few days, but that it will go away, etc. I explain that it is best to kill any cancer cells now, because she might get cancer in a place they can't treat it. Remember she can't really speak, but has been able to understand more and more. Her phrase is "I don't know" which sometimes comes out when she can't find the "right words" she wants to say. Of course, sometimes it is an appropriate "I don't know", too.
When I talk about going for chemo, she says I don't know, then eventually makes a face and says no. I don't know if she can make rational decisions. Like, she decides if she wants to go the store or stay in the car, or if her clothes are dirty. But, somedays she would skip therapy if I didn't convince her to go, and sometimes she is impulsive and touches her toothbrush to the bottom of the sink (yuck!). My brother talks to mom and gets her to agree to trying at least one treatment to see how it goes. Then, I ask to confirm and she is back to "I don't know."
I can't imagine her anxiety about the whole thing (though with how much I've cried today, maybe I can). I think of how I procrastinate and postpone and would do anything to get out of a colonoscopy...this is way more than that. She went through fatigue issues when getting adjusted to anti-seizure meds. She missed alot of therapy and her walking and strength suffered.
It is so hard to know what is right. The doctor says because she is improving we should do it. I know it is her best defense. Sometimes my brother says- maybe, we should cancel it, if mom doesn't want it, she has been through so much in the last year, maybe we should let her enjoy the progress she has made, and just see what happens.
Back and forth we go. And I still haven't told her sister.
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Hi Regbeach,
I've been following you and your Mom's plight, making a suggestion here and there and this morning it occurs to me that you might get some different kind of feedback from a psychotherapist who works with older people and people who have had strokes. Just a longish consult or two with someone warm who can approach your Mom's situation from a psychological and quality of life rather than a strictly medical point of view.
Perhaps t he physical therapists can suggest a few psychotherapists whom they trust or "would send their own Mom to."
Perhaps getting this kind of feedback from the right person (wise and kind) will give you a different kind of information, information that can lead to the best outcome for your Mom and peace of mind for you.
Hugs,
Peggy0 -
Regbeach, I hardly know where to start. You have such a huge decision to make. I like Peggy's advice. Also, keeping in mind, that if you decide to proceed with treatment, you can stop at anytime. God bless you, girl. Your mother is the luckiest woman in the world to have you looking out for her. Praying for you, too. Caregivers need care too.
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Hi Navymom and PeggySull,
Unfortunately, since we already postponed chemo one week we are getting to be just outside the "window" for best time to start. So, I don't feel like we can postpone it to see someone else. The onco. says when people speak of quality of life that they are talking about quality of life for the next 4 months or so. If her walking declines terribly that might be longer I suppose- nothing to do with chemo directly.
I am going to discuss the whole thing with mom again today. She would go for pic line Tuesday afternoon, start steroid Tues, chemo Wed. With the holiday, I can't even call the dr. today- not that I have anything specific to ask him.
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Re: thyroid. I was diagnosed with thyroid cancer two years ago. That was my introduction to cancer but BC is definately another world. ALL of my bloodwork showed my thyroid was functioning. Tests were inconclusive, biopsy was inconclusive, so we took half my thyroid out (the side that was swollen). Even at that point, the surgeon told my husband that it didnt look cancerous. Guess, what? Pathology showed it was and I was back in for surgery two weeks after the first one to remove the rest of my thyroid.
So, don't write things off because bloodwork shows the thyroid is functioning.
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regbeach: I can only imagine how tough this is, on your mom and family. Wishing you all the best - you are an amazingly kind and considerate daughter.
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GowiththeFlow - thank you so much for sharing about thyroid. It truly helps to get feedback like that.
Rebeach - I will pray for the best outcome for your sweet mom. She is lucky to have you, and my heart goes out to you for having to make this decision.
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Gowiththeflow - Thanks so very much for your thyroid story. It confirms what I've been thinking about my ultrasounds and biopsy. I see specialist Friday. J
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Hi ladies. I am 5 days out from my latest surgery. This one was a lymph node transfer in Chicago. Signs are looking good that it is successful! I am saddened by news that a friend who just gave birth to a beautiful baby girl last monday found out she has a 10cm bc that has gone to the lymphs. She will have a pet scan and start chemo asap. Have not heard if its tn but it is a very aggressive one. She is 36yr old. Hope she comes to bco as it would be so great for support!
Maggie0 -
Maggie,
Glad you think your surgery was successful.....Hope it is....So so very sorry to hear about your friend, she has so much to deal with a newborn, it will be really hard for her. I hope she has a good support team at home, because she will need some help with a newborn. Sending positive thoughts and hoping all goes well for her.
angie
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For those following the story about the cheme decision for my mom. First, thanks for reading and commenting.
This AM (Monday) I talked about chemo again with mom. She was adamant with no. Then, I said she would still have to do radiation and she said no- which made me question her ability to decide all over again. Most of the day I was thinking we would cancel it. Then, I talked to an old friend who basically thought the original plan of trying at least one treatment seemed like something everyone had agreed to and why not do that. My brother and I talked to mom again. She tends to listen to him- like, she won't do extra exercises at home for me most of the time but will always do it for him. It's either his deep voice, or she's just tired of me telling her to do things all the time (take your medicine, move your foot, etc).
Anyway, with both of us there, she agreed to do it. Oddly, this time, she cried, which of course made me question all over again. It seems no matter the decision the opposite one always seems better! I say oddly- because the neurologists told us her personality and emotions would be affected by the stroke. One specifically said she would never cry again. She has laughed, she has been annoyed but through all of rehab and breast cancer news never one tear until today. Maybe the situation finally sunk in, maybe her decision this time even with tears was made with a different clarity, a realization that chemo as bad as it might be, might be a good choice. Or maybe she just couldn't take us bringing it up again and is doing it because my brother said the drs. and us think it is a good idea to try.
Either way, it doesn't feel "better", it just feels surreal. Of course, I googled one more thing and read horrible stories of side effects- numbness in feet, blah, blah. And read that the steriod has a moderate interaction with her anti-coagulant- trying to tell myself that it is just for 3 days.
She is always tired when she goes to bed (silly, aren't we all), plus she takes her more of her anti-seizure med at night which might add to it. Those are the moments when I think- My God, I hope she can still walk on the "fatigue days" and that there aren't more than a few in a row. I thought her agreeing would feel better. In the AM, I first felt bad (like wrong decision) when she was saying no, then I felt sort of relief that we wouldn't be dealing with chemo. Then after talking to my friend, I felt like chemo was right again, then mom's tears...
Steroid in the AM and IV line in the afternoon.
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regbeach - what a tough time emotionally for you with having to make the final decision for your Mom about chemo. It must be very confusing, exhausting and frustrating for your Mom when she cannot fully express herself. MY thoughts and prayers are with you both in the next few days.
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regbeach what a terrible decision you have to make for your mum. It's bad enough to make it for ourselves let alone for somebody else. If she is unable to communicate she may be very very scared as we all were. I feel so sorry for your mum and you. Why not try just the one treatment. She can stop if she wants to or you want her to but at least you may know how it will affect her and she may be just fine. Remember what they say "we only get what we can handle" and I hope its true in your mum's case. My thoughts, prayers and hugs are with you both at this awful time and I hope it works out for you both. xx
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regbeach....my thoughts are with you both...whatever you decide will be the right decision I am sure.
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to regbeach - We often "second guess" ourselves about our treatment plans. How hard it would be to have to make the plans for someone else. Just know that your friends on this forum are aware of all the hard decisions you've had to make, and we know you are doing the best you know how for your mother.
The doctors are doing the best they know how, also.
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Nothing like a last minute new decision....
First, thanks for your support in my decision-making regarding Mom and her chemo. I was mentally ready to start it, felt I could (as her caregiver) deal with the side effects, picked up the prescriptions and Claritin, left a message for the doctor with a dozen final questions (making sure he knew she couldn't feel cold on her leg -in case of neuropathy, asking about B vitamins for it, asking if she should sleep in recliner in case she throws up at night because she can't sit up herself, etc.)
Half an hour later, mom woke up. She looked really tired. I reminded her we were going to hospital in a few hrs, re-explained the whole situation, she said no, was visibly irritated. I talked to my brother. We cancelled it. Talked to the doctor. He said either choice would have been a good one. So, we are hoping for the best.
And, yes, I am still thinking about those rampant cancer cells, wondering if they will multiply "too fast", and sort of wishing poison was attacking them. Hopefully, those thoughts will pass. Off to schedule radiation.
Good luck to everyone on this forum. Your ability to manage counteracted my worry each time I found some horror story elsewhere. Thanks again! Since she is triple negative, I am sure I will check in now and then.
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regbeach - maybe radiation is the way to go. It is not like she is not getting anything at all, radiation maybe all that she nees, keeping fingers crossed. Radiation will kill the suckers. Everything that happens, happens for the best, although while going through it, it is difficult to believe. Best wishes, my dear, and don't forget to take care of yourself too.
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regbeach - what a difficult experience for both you and your mom. My Mom was diagnosed with breast cancer (not TNBC) when she was 80. She let my sister and I accompany her on all her doctors visits and said "explain everything to them and they'll explain it to me later". She went through mastectomy, chemo and radiation and did really well throughout it all. But, be forewarned, during the radiation, be sure to moisturize, moisturize, moisturize. We thought Mom had gotten away clean with the radiation but, after the treatments were done, the burn started to show. She ended up with pretty bad and painful burns on half her chest for quite a while. My Mom wasn't one to complain, so when she said it hurt, it must have been really painful. After the cancer adventure was done, Mom was diagnosed with Alzheimer's so I also know how difficult it is to make decisions for them when they really can't tell you what they want or how they feel. You just do what you can and know that, even if you make what turns out to be a wrong decision, you made that decision out of love - that's all you can do. Good Luck to you and your Mom. We are all sending HUGS to you both!
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Mags - glad it sounds like your latest surgery was successful.
I am so very sorry to hear about your young friend's diagnosis -especially with a brand new baby. I am extremely saddened to hear about the young women with small children. I pray that she will get quick and very effective treatment and will be able to leave all this behind her and enjoy her little girl fo rmany, many years to come.
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Mags sorry to hear of your friend and what she has to go through. Hard enough at the best of times without a young baby to care for. I hope she is getting plenty of love and support.
On Tuesday nights on TV here there is a medical program that I always watch. Last night there was an 18 year old girl with breast cancer. She elected to have bilateral mastectomy. Nothing showed in the nodes and the operation went well with an immediate reconstruction. Each story is over two weeks and just as it ended last night the surgeon told her "we have some news" and the next thing you see the young lady crying and so was her mum. My heart went out to that wee sole. 18 years of age. Cancer can attack anyone now. You think at least the young are at least safe but not anymore. Cancer sux at all ages.
Thinking of you all with side effects, treatment and even just trying to live a normal life. My prayers to you all. xx
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I don't want to change the subject, feel bad talking about hair in the midst of so much pain.
My hair after chemo changed so drastically. It has become like rope, not shiny hair as it used to be. Actually, it is not like hair at all. And it completely stopped growing. The top hair has still not reached the bottom, so the bottom looks so very thin. It is becoming hard to dress up in the mornings with this hair. So, I went to this showroom close to my house where they displayed hair extensions. I have used extensions before, when I had beautiful hair, so I thought it would work again. I went ahead and bought one for $144 called the voluminizer. You just tease and hair spray your hair a little bit, and then put these 4 clips and they should stay, giving volume and length. This was such a bad purchase and I shouldn't have done it. I have always been a thin haired girl, now I look like a full haired monster. They say on their return policy that if I had not cut the main clip then they would refund within 14 days. I doubt they will give me anything back, what a waste. Does anyone have any ideas how to deal with very fine thin hair, what to do after chemo takes your hair away. The clips are falling off, it won't stay in. I might try other types of extensions, but they charge a ton of money to install them. My concern is even if I am willing to pay for it, what if I am most uncomfortable after a $700 job is already done on your head. 
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Lovelyface, I look like a monk right now. My hair used to grow too fast. Now it's on strike. Back to the scarves, wigs, and ball caps when I go out. Someone suggested nioxin treatment. If I get the energy I might buy it. Still so tired...it's only been two months since chemo and bilateral mastectomies/reconstruction so shouldn't complain!
Peggy0 -
my hair is falling out quickly see a lot of empty spots on myhead...i'm praying it grows back ok...with everything we go thru, its a shame we have to worry about this too....hope everything works out and your hair gets better.
sending positive thoughts
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My last chemo was 4/2 and my hair is slowly starting to grow back....super slow though. My newest issue is my eye lashes are falling out!
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jenjenl- Don't worry about your eyelashes/eyebrows... It happened to me too, 1 month after chemo ended! They grow back pretty quickly.
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Glad to hear your hair is growing back.
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Today is a great day! Starting to emerge from the chaos cancer has caused. First, my cancer is GONE! I had the MRI with contrast and it is not there. My surgeon said this is the response you hope for. Second, she said she can still do the lumpectomy as she compared my two MRIS's and feels confident that a clip can be placed before surgery where the cancer used to be.
She also felt that she would not need to take much tissue because there is nothing there. Basically a hole, where the cancer used to be.
I smiled a very large, real smile! Considering last Friday how down I was and how weak. I had to have a blood transfusion as my blood counts were dangerously low. I thought that feeling was the new normal.
Everything is looking up!
Thank all of you ladies! Your being here is amazing! I don't post a lot but I read everything, everyday and feel connected to all of you!
Lisa0 -
Idawson01 good to here your good news. Isn't it funny how we feel so down and fearful and a little bit of good news regarding ourselves or others make up feel so much better. Yep everything is looking fine for you thank goodness. Have a good day as well. Hugs xx
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