Calling all TNs
Comments
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I am so nervous. Had a 6 month PT/CT Scan yesterday. The Contrast gave me the runs, but otherwise the test was uneventful. Find out the results on Tuesday afternoon. Please keep me in your prayers. All of my TN sisters are in my daily prayers. God Bless one and all.
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I go in for my 6 month ONC appointment next week on Dec 15, but my ONC doesn't believe in scans unless there are symptoms. He does routine blood work, but said that isn't even a good guage for TN. On one hand, I like the lack of scanxiety, but on the other hand, would like to know "for sure" that my body is still NED. Any others on the same kind of checkups as me?
Kathy
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((((Suze))))
Ksteve - many many many of us are on the no scans without symptoms schedule. My onc just does a bllod draw before each appointment. I was on a 3 monthly schedule and now on 6 months.
Guygirl - will be thinking of you. I had a CT scan before tx only and had the same problem with the contrast. I barely made it back to the house before it all came flushing out. I was literally running up the stairs to get to the bathroom!! Why the heck don't they tell you this might happen. I only live 5 minutes from the hospital - imagine if that had happened in the car
.Lisa - emotionally, I found this time before tx the hardest.
I don't post very often - I'm leading a pretty boring life, but read every day and feel like an old timer on this thread. I am down to a handful of threads in my favs, and this is the only one where there is ALWAYS activity.
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Susan, I just wanted to let you know how much I am able to work on the Halaven. I hope it will be very manageable for you, too. The days when I am working (at least 12 days per 21 day cycle) I literally work mostly at my desk from 9-9:30 am to at least 10:30 pm, sometimes midnight. I have some appointments during that time and my job involves some walking - not too physical but right now it feels rather physical to me. This past weekend I walked 2 miles Sat and 2 miles Sun. I feel tired - and when I wake up I'm tired -and for about 4-5 days following each infusion I have flu like aches and some bone pains and just lie around- but no nausea and the hair on my head is still with me although my eyebrows, not so much. I've had a tiny bit of bladder irritation but I've started drinking more water for that. I hope it will get you NED and quickly! We have 4 people in our local trial group on it now but only one ahead of me. I'll try to see if I can find out any news this Friday when I go in for my infusion.
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Lisajcj,
I'm sorry you have to join us, but you will find some wonderful friends here. I have researched and tried to learn as much as I can about my disease and gone for second and third opinions when I felt unsure. My sister has been a tremendous support to me as well as my grown daughter. I have used distraction as a positive coping tool -I play Mahjong and Angry Birds on my phone, sew cat beds, read books, and watch movies or some TV shows!) and relax to some guided meditations (check out Bellaruth Naperstak on line - free download. I have also taken advantage of the free counseling at the hospital.
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Susan-Sorry to hear about your progression, but like you said, you got that out of the way! Onto better things now! I have been thinking of you.
GuyGirl-Sending you good thoughts!
KS-I am not sure which is worse, scanxiety or not doing scans. I always feel so good when I get good news from a good scan!
So my path report came back great, well kinda! Nodes and breast negative, but there was an odd fragment of cancer in an odd place, the lab thinks the tools they used were not properly cleaned and that it is actually someone elses cancer on my slide! They are 99.9 % sure it is not mine because of where it was located, and they are redoing everything and comparing this cancer to my previous slides. Can you imagine? My doctors are pissed! They do believe I had a complete response to chemo, but the lab is going the extra mile to fix their mistake, which they better! I don't know how to feel, happy, pissed, both?
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bak- I'd go with "both"!
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It's official! Complete response to chemo! The lab found the cancer belonged to someone else, my path was clean. I am sad for the other person:( I hope someone is reprimanded for this mistake!
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Bak, great news!!
Suze, oh I am sending you love and strong thoughts.You are a brave and wonderful woman.
I've been having back pains, in the ribs, for about two months, and lately, freaking out because the pains are still present. Today, I finally went to my GP and he put his finger where it hurts in my back, and said he thinks it is connective tissue not bone. I was hugely relieved, but we are not totally out of the woods. I'm going to try Celebrex for a week and if that doesn't make the pain vanish I'll have to suck it up and do a bone scan.
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Titan, my onc told me that's it's not dense dose
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Jazz thanks
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Just had my picc line put in yesterday and now have a slight fever, sore throat taking oral antibiotics since also had headache, chills, and slight fever. Onc told me my white count is low so no fruits or veges for a week, uggggh. I'm still so sore, ouch!!
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Bak, congrats
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Yay Bak...complete response hey? alright! can't ask for much better than that!
Lisa..yeah..the waiting for your treatment plan is the worse part...you know you have BC but you don't know what's next...it's not easy at all...being tn..you are guaranteed surgery/chemo/rads..sorry to say...but oh well..all of us have been through this and made it to the other side and you will too! Hang in there! personally once I had surgery I felt so much better....getting that freaking cancer out of me...or with the ones that had chemo before..to actually see the lump dissolve..that's good stuff too.
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Suze....sending you good thoughts for a turnaround response with the Halavan. I like the positive attitude from both you and your Drs.
Bak....wow, what a terrible mistake, but YEAH for your results. I am still available for any Tomo discussion. I am in Seattle so could meet you for coffee? The drains are the worst. I hope you get yours out soon!
My MO believes in scans and I like that. The scanxiety is terrible, but hearing good news makes it worth it. Each and every twinge would probably make me ask for one anyway so nice to know I have a schedule for them (every 3 months for the first couple years).
My tumor did hurt as well. Not at first, but right before diagnosis every arm movement that brushed over it sent a throbbing pain down my arm. At least that's how I remember it. It seems so long ago. Treatment or cancer, which one messes up your perspective of time more?
To all the newest members of the family. Welcome......:)
I just had one week off of treatment and it was great. Good energy and my cold finally went away. Back at it this Thursday. The good news is I only have one more month and I'm done. Now if we can just make this one stick. I would like to be done for a nice long while!
I hope everyone is enjoying some festive spirit!
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Morning everyone, great news Bak.
I have a weird aching pain in the back of my thigh so now i have to for a bone scan.
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Inmate-would love to meet for coffee! Still kinda lazy right now from surgery, but I will be up to it soon!
Bernie Ellen-Sorry about having to go through scanxiety. We are here waiting for results with you, with fingers and toes crossed!
Thanks for all the congrats! I don't think it has totally set in yet, but my bs and mo were practically doing back flips! They were very upset with the mixup but they reassured me that the lab retested everything and matched up the cell types and such.
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Hello Gillyone
I was interested to know that your oncologist takes blood tests at your regular check ups. I think this is a good idea but when I put it to my oncologist she said it was only good for that particular day. I think that blood tests are a good way of looking for cancer markers and I am in favour of these as a way of preventing cancer from progressing to tumours. I think we should have blood tests as mass screening for potential cancers here in the UK.
I was glad to know that you are well.
I send my best wishes to suze35 and Laurajane from across the pond. I hope the eribulin will help you suze35.
Best wishes
Sylvia
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My mo also does blood work, they told me that it was just to check wbc. My mo told me that with TNBC the tumor markers are not accurate.
Suze35 praying for you that your new meds will kick cancers ass!
This board has been so busy, so congrats to the ones with good news and hugs to the ones who need them.
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Sorry I haven't been posting-reading everone's posts-getting a cortisone shot in 9 days & hoping it works.
Suze & Laurajane: You are both in my thoughts daily-Hugs!
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BAK - Great News!!! Very happy for you.
Bernie - sorry to hear your having pain and now have to go thru the scanxiety. I think I go thru it for everyone on here too.
3 boosters rads to go, then I'm done treatment, relieved and terrified at the same time.
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I am HOOKED on Mahjong and Angry Bird...
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Fighter - A friend of mine came for a visit over the weekend and talked my hubby into playing Angry Birds, he was immediately addicted and this morning finished the last level of the game.
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thanks to everyone
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bak - yay!!!! I can't tell you how happy I am to hear your news! How horrible about the mix up though, grr. Still, I hope you are celebrating heartily!
Bernie - I think leg pain after chemo is normal, I know I had plenty of it, and I don't have any mets in my legs. The Taxol really does a number on you there. I'm sure your scan will come back clear, keep us posted!
christina - thank you for all of the info on how you've done with the Eribulin! My MO said the worst SE was how it tanked numbers and caused fatigue. I'm just going to take it one week at a time and sleep as much as needed.
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Mah Jong...my precious....
Just finished my first infusion - no premeds, and only 15 minutes total, yay!
We are supposed to get some snow tonight, which will be nice. It's time for a white Christmas I think. Have a good day everyone!0 -
Wow, this thread's been so busy!
Bak - congratulations on your path results. So happy for you. Hope you are celebrating by doing something nice.
Mity - sorry to hear about your back pain. I had that two months ago, and went for a bone scan, all was normal, doc didn't know what was causing it (maybe just age. he said
) but now it has cleared up. Hoping same for you. Bernie: Good luck with the scan - back of thigh sounds like an unlikely place for mets, but always good to be sure.
Christina: are you in a trial for halaven, or is it available to early stagers where you are? Just wondering...
Suze: thinking of you and fingers crossed for manageable SEs and NED!! And I too love white Christmases - we had a sprinkling overnight, sure hope we get more soon.
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Luah,
I am in a clinical trial for patients who had residual disease following neoadjuvant chemotherapy (I had 2 positive nodes and 2 cm tumor left following 6 rounds of TAC.) They will follow us two years for disease free progression and the trial is divided into three groups - TNBC, ER+, and Her2+.
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Stages of Grief After Losing A Breast
by Becky Zuckweiler
Anticipatory Grief
Grief is an unfolding process that consists of five basic stages. We start the grieving process as soon as we learn that a mastectomy is a possibility and continue grieving long after the surgery is over. Grief for an impending loss is referred to as anticipatory grief
Stage 1
Denial
When we first experience loss we go into the denial stage, during which we may feel shock, disbelief, and numbness. The denial stage is nature's way of cushioning us from the bluntness of reality. Denial allows us to gradually absorb the painful truth. Many women who have grieved the loss of a breast describe their response in the denial stage as hearing the information the doctor is telling them as though the physician is ta1king about someone else. They find themselves thinking that cancer and mastectomies happen to other people, not them. This response can give you time to intellectually attend to the details, such as making appointments with the surgeon and oncologist, before emotion floods in.Stage 2
Protest
As our initial shock wears off we move into the protest stage, a phase of intense emotion, including anger, sadness, and confusion. As the facts start to sink in, our thoughts set off an emotional reaction. Our fear of surgery and of cancer is probably foremost in our minds. Before we are even sure we have cancer, we often start to think about dying and leaving our loved ones behind. We feel sad for our kids, our partner, and ourselves. We often feel betrayed and angry with our body. My clients consistently ask me what they did to deserve breast cancer. This is the time during which we tend to blame ourselves or others as we try to make sense of the loss. Anger at God, our doctors, or the relatives who passed on the bad genes is very common during the protest stage. Besides feeling the need to direct our anger at someone; it is also common to engage in unrealistic mental bargaining, such as promising to go to church every Sunday if our breast is spared. This bargaining is a combination of denial and our need to feel that we have some control over the situation. During this time, it is also common to experience physical symptoms from stress, such as diarrhea, constipation, neck and shoulder pain, rest-less sleep, and fatigue. Your stomach may ache or you may find yourself with a splitting headache that makes it hard to think. Your body may seem to be screaming out a message of emotional painStage 3
Disorientation
The third stage of grief is the disorientation stage. This stage is often accompanied by restlessness, confusion, and depression, as we have to change our routines and adjust to the changes the mastectomy has brought. We may also continue to experience the physical symptoms of stress during this stage. Disorientation is very natural after your chest has healed enough to begin to wear more normal clothes and you are feeling strong enough to go out in public. You can't just go to your closet and pick out an outfit like before. Throwing on a bra and a T-shirt is not an option at this point. Now, selecting an outfit means finding a top that your tender chest and restricted arm can tolerate, plus finding a way to fill in the missing breast. You have lost a breast, the freedom to wear a variety of clothes, the movement in your arm, trust in your body, some of your sexuality, restful sleep, and physical comfort, to name a few of your many losses. And even though most of these losses are temporary or become easier with time, making the adjustment to them is likely to cause you to feel confused and disoriented.Stage 4
Detachment
Following the disorientation stage we move into the detachment stage. During this stage we tend to isolate and withdraw ourselves, and possibly feel resigned and apathetic. It is as though we have to go off quietly by ourselves and sit with our loss. Too much contact with other people at this time often feels like an intrusion and a lot of work. We often feel we need to be left alone in our misery to fully absorb our loss and get used to the fact that a mastectomy has forever changed our life.Stage 5
Resolution
The last stage of grief is resolution and it is during this stage that we enter a renewed state of reorganization and acceptance. We are not happy about the loss or our breast, but we see that we can live without it. The resolution stage often brings us insight into our life and ourselves that builds character and produce wisdom. During the resolution stage our mood lifts and we find we are able to experience joy again. This is also a time when we become grateful for what we have and want to give back. Volunteerism, such as in breast cancer support organizations, frequently accompanies this last stage of grief. If you give yourself the room to go through the emotions, you will move forward into the resolution stage of grief where you begin to feel acceptance. You will want to take back control of your life by becoming pro-active again. Priorities become redefined and life goals are reestablished. Your overall reaction may actually be a blend of loss and gain. Initially it may have felt like a horrible loss but, as you move through the process, you discover some advantages that come along with your body changes.Automatic Behavior
There is also something called automatic behavior that often accompanies the grief process. This is what is happening when we don't get our routine behaviors quite right and we start to feel like we are going crazy. As we process our loss we become distracted from life's little details, and this natural preoccupation results in poor concentration while attending to daily tasks. As a result of automatic behavior you may find yourself putting the cereal into the refrigerator and the milk into the cupboard, squeezing a tube of skin cream instead of toothpaste onto your toothbrush, or seeing that the traffic light has turned red but not really registering it, and driving right through. Your short-term memory will also be affected because good concentration is required for the memory to work well. Do not panic over these lapses. They are temporary. However, it is helpful to remember that automatic behavior can occur during the grief process, so you can safeguard yourself. When you set out to drive, remind yourself that you are prone to poor concentration and constantly remind yourself to tune into the "here and now." During this time you should stay away from dangerous machinery until you feel your focus and concentration return.
Each of you will go through the grief process in your own way. The stages of grief are meant to give a general description of the grief process, but in reality they are not as clean-cut as I have described. You will move back and forth through the various stages and can experience more than one stage at a time.
The significance you attach to your loss will determine how long your grieving process will last and how intensely you will feel it. Grief from losing a small purchase you just made may last only minutes, whereas a significant loss such as the death of a close friend, a divorce, or a house burning down may take years. Significant losses are often brought to mind by special events and seasons associated with the loss and these triggers can create new emotional pain. Most women take about two years before they report feeling fairly resolved about the loss of a breast. Your most intense grieving will probably happen close to the time of your surgery but you will likely continue to experience some grief from your mastectomy for the rest of your life. You may feel that you have just started to accept your loss just when something else seems to set it off again. It may be three years later, when you are faced with having to find an evening dress for an elegant wedding that you suddenly feel the tears bubbling up again. You may want to scream and stamp your feet at the unfairness of only being able to consider a quarter of the dresses because of the changes to your body. Twenty years after your surgery your best friend or daughter may be diagnosed with breast cancer and you may find yourself reliving some of your own pain as you walk through the process with her. All of these feelings are normal. Every woman grieves in her own way and in her own time.
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Great post, MBJ. Thank you.
Does anyone have any info on LJ? I'm worried.
Navy
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MBJ..though I didn't lose a breast...I equated your post to the whole cancer experience..everything is so true....thank you so much for posting this...
There is no way in hell that we will ever be "normal" again...yeah..a new normal..but not what we were before...I guess we have to learn to live with it because we have no other choice..It takes so much courage for us to not just curl up in a ball and remove ourselves from the entire world...though I have thought about it!
I just hate cancer..I hate the word, the sound of the word, how I feel when I type it, hear it, see it in written form...
I sent LJ a PM but haven't heard from her..I'm worried.
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