Starting Chemo March 2015
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My ultrasound diagnosis was the first week of December, then follow-up on December 23rd with a mammogram and ultrasound, then MRI in January and surgery January 23rd. Pet and bone scans first week of February after surgery. So I'm not sure when my anniversary date really is since I didn't go through the biopsy process. I do know it has been 7 months since final chemo, and I feel great and I have hair! My sons tell me my hair is cool, that I look like a throw back to the 40s, and I guess bobs are in this year, so I should be right in fashion! My friends tell me it's so cool I have a natural wave because women used to spend a lot of time trying to get what I have naturally. Whatever, it's hair, and I have it.
Oncologist wants to do tumor markers on me (ugh) since my new insurance has denied all scans without symptoms, which I actually think I am glad about. The guidelines for breast cancer say that even tumor marker testing for my stage is unwarranted and can lead to false anxiety, so I have a call into the oncologist to ask why. I just want to live my life and worry about any recurrence if it happens, but not now, please. I did my mammogram, came back fine, and I still get bloodwork every three weeks.
What are others doing regarding testing?
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I am sending hugs to everyone. I think most of us have anniversaries either last month or this. My mammos, US, and the BMX were all in December. At this time last year I was at the beginning of a troubled surgery recovery. I never dreamed I'd still have pain a year later. It is better, and these days I even have days where a day or two will go by with a tolerable level. But it comes back. I was glad for the bone scan to come back clean, but it means that the weird pain around my ribs and sometimes my back, have been assumed to be some kind of muscle spasm/pain related to surgery. And there's been no suggestion on how to deal with it. They've finally admitted that they do see patients like this. Somewhat comforting since I heard so much denial before. I've recently been told to prepare that I'm in a minority of women who may take years to be pain free, or never be at all.
Anyway, I have put that in a box, and I try not to dwell on it. In the meantime, I too, feel like I've lost my center. I love the therapy visits I do with Jack. I think I need to sign up for more. I had cut back because I was having trouble seeing to drive. After the second surgery, next Friday, I should be going out more.
It doesn't help that the weather is not encouraging for outside activities like gardening. Walking. Shopping.
I keep telling myself that I'm still in a transitional period, my body still may be recovering from chemo, and that slowly, as the good weather returns, I too, will recover my sunny disposition and can build strength. In the meantime, I'm reading a bit more. Although it is sedentary, I have had difficulty concentrating and reading more than a few pages, so this marks a distinct improvement.
Next year I will be wise to the fact that my cancerversary, combined with the holidays, is a potentially dangerous time, and perhaps go visit a friend or two in warmer climes before I start down the slippery slope.
Sorry for such a long post. Thank you for listening. I think of you all daily, and thank whoever is "responsible" cosmically, for putting each of you brilliant, funny, caring ladies in my path. Hugs to you all.
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T- I'm sorry I meant to answer your question. My MO does labs quarterly now, which do include liver enzymes, tumor markers, and another one I can't remember, that seems to represent (there is some argument) either cells dying off because tx killed them, or some other reason. I think it's LDH.
Initially my MO said he wouldn't do tumor markers, because they are not reliable. Their policy seems to have changed to monitoring them, but in the absence of any other symptoms, they are just kept as baseline numbers. I had a scan because I had some severe pain that was not the same pain as I had from my surgery. And it did not resolve on its own after more than 3 months. My insurance did cover a base CT/PET last year, but won't pay for scans ongoing without clinical reasons to do so.
I don't mind them doing the markers, since they seem to have an attitude about them I can understand and live with.
In your case, I would have been most upset at the apparent contradiction that your BS was the point person for your ongoing care, (and who you have the strongest bond with) and yet this new suggestion came from the MO. I think I would take a meeting with her to explain to you why. They don't get paid to answer emails, but if you are sitting in front of her, a patient paying for your half hour, you can make her clear up the confusion and backhoe dallying which is upsetting you. Worth the time and copay, IMO
I'm very sorry indeed because it seemed very clear to me that everyone was on board with your follow up care. Now somebody had to throw a monkey wrench in. I would be upset too. Mismanaging expectations is a serious flaw in our care.
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I am being monitored quarterly:
- MO is doing basic blood counts, D, and iron/ferratin. Liver enzymes were good in September so not checked this time around. I see her every 3 months.
- PCP is doing A1c (blood sugar) and lipids. Good in September and January, so not needed again until June. I normally see her every 3 months, but we're skipping the next one unless I want to go in.
Presumably annually one of them will do a full metabolic panel.
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PB: I have gone to therapists though out my life and not found many of them to be very helpful. Most recently, I went to a man recommended by the cancer center. I went for maybe 4 sessions and I decided he was not helping me at all, he was hard to get to because of major road construction and he was extremely pushy about scheduling follow up visits. I knew 'breaking up' with him would even be a bit hard. He left me a message just before the holidays 'reminding' me he was available. I am guessing it is because a lot of people have trouble getting through the holidays and he would use that as an opportunity to drum up business. Anyway, to make a long story short, I had a follow up visit with my RO on Dec 29. Here is what she said to me: Yes, it SUCKS what you have been through but I am guessing you will someday find that some positive things came out of it. She wasn't discounting my experience at all, but she was just pointing out that dwelling on the negative isn't productive either. That one 2 minute conversation from someone I really connected with did more for me than those 4 therapy sessions.
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I see my MO every 3 months. I know he does tumor markers and Vit. D, not sure what all else. My visit summary of blood test result is 2 pages long though! He says although tumor markers go up and down, what he looks for is trends. He says they really show inflamation, and even breathing smoke the day befor a test can cause them to rise. Being a TN, a lot of times I'd prefer not to be monitored at all, since if it comes back there isn't a lot they can do. Guess that's kind of morbid, huh.
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My MO does a variety of test I can't remember & tumor markers every 3 mos. She said w/ the tumor markers they look for big differences over time. So if they double from one test to the next they don't spaz out, but if they double again (quadruple) then it's time to see what's up.
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Thanks for sharing Allison. It's helpful. I don't want to go again if it's not going to help, but perhaps maybe I should at least give it a chance. I don't like being in this limbo place and am hoping they can give me tools to help. She suggested antidepressants if I wanted to try it, but I really don't want to take more pills right now if I don't need to. Not sure what to do...
Follow up for me is every 3 months with MO. No labs, no scans, nothing unless symptoms come up. I haven't had labs done since last chemo in June. I finally requested labs recently myself so I could know my lab values were ok post chemo/rads and after starting the AI. Thankful all my labs were fine
PB
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Worth doing the basics since blood counts can be screwy after chemo.
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The observation I have about therapy is this, maybe two cents from the peanut gallery, but here goes. One time I went to a therapist about my ex husband and his chauvinistic Midwestern ways, the me man, you woman, I'm the bread winner, you cook clean house and have babies. The most important questions she asked me were "what do you want to get out of the therapy? Do you want to stay with your husband, or work towards leaving him?" So I guess my words of wisdom are "what do you want to get out of therapy?" I think it helps going in to have something you want to accomplish or deal with that can be vocalized, if that makes sense. With cancer, it's hard to vocalize how I want help because I don't know myself, other than can I wake up tomorrow and it never happened to me? We sent my step daughter (bipolar) to a therapist Katy recommended who also deals with PTSD veterans. I think dealing with cancer can be similar. He's tough, she has an exercise plan, has to write down her thoughts everyday, and has written exercises he has her do. So maybe part of it will also be finding the right therapist who specializes in cancer victims.
I guess I will do the tumor marker testing, sigh, sounds like some of you are getting them done too.
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There are different styles of therapy. Worth thinking about whether you want a therapist who's active, vocal, gives homework, listens intently, doesn't self-disclose, etc.
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I had my labs done a few weeks before my appt with MO and I had asked my primary doc to order the tumor markers. My MO got upset that they were ordered and said it wasn't appropriate, they are unreliable, and not needed in my case. Pffffttt...whatever! I just nodded and said 'ok, my bad'.
He said the only testing I need (in relation to cancer follow up) is CBC and chem panel every 6 months and Pap smear annually and if symptoms show up we address it on an as needed basis. No mammo since I had BMX but no other imaging either unless there is something suspicious.
In a way I was upset thinking I needed more testing but I quickly let that go and actually felt better...like I really can start to move on and be done with cancer.
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I will see my MO and BS at the end of the month for the first time since August. Seems I'm on a 6 month check up schedule. I've been told no labs or scans absent symptoms. I'm going to request blood work and thyroid check at my next appointment and see where I get with that.
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Thank you Theresa and ksusan for your replies. It's very helpful. I think in a nutshell post treatment now I'm having trouble moving forward. I have both breast and thyroid cancer and it feels like I can't stop thinking about it all the time. My kids are 7, 10, and 10 and I have such fears of cancer returning and that I won't be here to raise them. They need me. These fears are making me anxious, sad, and depressed, so much so it is hard to find joy out of life now. I'm trying to do my best to keep myself distracted but it's hard. I don't want to spend my days worrying about something that hasn't happened yet, but find it hard to stop. Trying to be positive...perhaps in time these fears will lessen?
Sorry to be such a downer here
PB
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pboi, you aren't really post treatment since you are doing arimidex. Don't discount how powerful that drug can be, I've seen women who have survived worse cancers for a long time on that drug. Not helpful, I know, but you are still taking treatment, and will be for a long time. I think sometimes it is easy to discount a drug because it isn't a chemo infusion. You are doing everything you can. I know that may not help with your worries, hang in there.
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Bekah: I think what bothers me more is trying to explain to people that I have no physical proof, if you will, that I am cured. They want that. Then I try to explain it's not really possible and they feel uncomfortable and I feel uncomfortable.
I know everyone here understands what I mean.
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PB, something that incorporates mindfulness and breathing might be a better fit that therapy for you right now.
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Allison- I do know just what you mean.
PB- (((hugs))) it is so hard and I agree with both T and Ks. Don't discount the power of the AI. And mindfulness training is a very good suggestion. There are some very good DVDs out there that can guide you while you are learning. It's about being present in the moment mostly. And it's a skill. Don't beat yourself up because you don't do it naturally
And nobody gets perfect at it either. You just practice.
Do you remember when Specialk talked about just feeling the dishwater when doing the dishes? When you learn this you can practice it wherever you are. Anytime you feel anxious and in any place but the present.
I'll look for a link for you. KSusan might have a suggestion too. My last therapist was all about this and I have some books around. That, by the way, I should probably re-read myself
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PB- someone you may want to keep an eye out for is Jon Kabat-Zinn. Specialk recommended his "full catastrophe living".book some time ago. It's a book. I bought my copy used like new on Amazin cheaply. He has CDs but they appear to be out of print and therefore quite expensive. He has a beginners guide to mindfulness. This is the one my therapist recommended also.
However, there are many other choices. Here is a link to an Amazon page with many choices. You can look at descriptions and read reviews and see if you think it's worth investing $15 in one.
ETA- found a reasonably priced kabat zinn here:
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http://www.pbs.org/thisemotionallife/blogs/practic...
Kind of a simplistic explanation, but a good start! I make myself, every day, at random times, stop and focus on something outside myself, even if it is as simple as admiring and wondering how a hummingbird survives only on nectar and how can that be? And acknowledging that all life is a miracle
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Sorry PB couldn't make the link hot. So click on the above.Struggling on my phone here.
Once you get to amazon and see this product, there will be others like it you can read and ponder.
Hope this has been helpful and not confusing!
Hugs
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Ksusan, Theresa, and Katy...thank you so much for the input. It does seem to me that trying the mindfulness training might be more helpful to me right now than therapy. I was able to find the items on Amazon and will order them to try it.
From the bottom of my heart thank you ladies for the advice and support...this is such a safe place for me to share, a place where I know people actually understand what I'm feeling, people in my real life don't get it. So thank you...💕
PB
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I'm teaching undergrads with Full Catastrophe Living this term. Mindfulness-based Stress Reduction (MBSR) has an excellent research base. There are a ton of videos on YouTube. For books, I'm very fond of Thich Nhat Hanh (which is who talked about washing dishes with your complete attention) (Being Peace) and Sylvia Boorstein (Don't Just Do Something, Sit There).
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pboi - the study I did with the USF School of Nursing on Mindfulness Based Stress Reduction was started right after active treatment for the very reason you are experiencing. Here is another Jon Kabat-Zinn link:
http://www.mindfulnesscds.com/
The study I participated in was interesting in that those of us who did the weekly class had lower cortisol levels (quantified with blood and saliva sampling throughout the study period) when compared with the control group who did not take the classes. Fortunately, those in the control group were offered the class after the study was completed, so they were not denied the potential benefit.
jackbirdie described the dishwashing scenario, but I apply this approach to as many things a day as I can - in the form of focus and engagement. I feel like the more I do this the more I notice little things around that bring me joy, or offer humor, or otherwise enrich my day. It may also sound trite, but the random acts of kindness thing works for me too, little things - but it makes me feel happy on the inside when I do something unexpected for someone. I also think there is value in finding a therapist who specializes in chronic or catastrophic illness, and there are even some that specialize more specifically with cancer patients.
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Don't know whether to be grateful for being triple negative and not having the option of a lumpectomy or not. Recurrence risk is higher but at least I haven't had to take the tamox or ai or herceptin and didn't need radiation. Skipped reconstruction and prophylactic surgery so not nearly as much pain and suffering as everyone else this past year. Only thing driving me crazy at the moment is the thought of going in for a mammogram on my other breast a year later. Just remembering it is awful plus the drive to the clinic in the cold January snow and waiting in the waiting room. I am so scared of crazy drivers in the snow and even more scared of over zealous radiologists. I am thinking of blowing off the mammogram altogether, at least for a while. Reading Cochrane reviews and not sure it is even necessary to closely follow the other breast as recurrence risk is not for the breast. I checked my MRI report from last year and that breast was clean. Am I crazy? Would I be able to look the radiologist in the eye and tell him I want to go back to the surgeon for an open biopsy rather than have a biopsy at radiologist office if he sees something? Just having PTSD thinking about that place. Probably didn't help reading all those reports trying to find out what it said about my remaining breast.
Hope everyone has a good start to the new week. Wish I was with Sharon with Bouie and the Alpacas right now!
P.S. Full Catastrophe Living, Wherever you Go There you Are, Peace is Every Step, The Places that Scare You by Kabat-Zinn, Thich Nhat Hanh and Pema Chodron where all helpful to me at different times in my life. Peace is Every Step is a good start.
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Neverthought- the whole business is traumatizing. For sure. I don't blame you at all for your feelings and negative associations.
I had to laugh. When I was reading your post my mind jumped to....."Oh my god!!!!!! There are over-zealous radiologists driving some of those cars! In the snow! "
But seriously. I think you need to try not to think about it right now. When it comes closer to the time of your appt., see how you feel. Come talk to us. You know we will all climb in your pocket and go with you.
I had the BMX and one of the main reasons was I didn't want to have to go through it again. I know now I didn't protect myself absolutely from it. I mention it only so you can understand how scary I thought it was too. But in all fairness, a yearly screening mammo is what found my cancer. I know mammo isn't the best tool. If money was no object, most people would pay for a breast MRI every year. Maybe that will be standard of care some day.
I would accept the fact that you are scared. Embrace it. Own it. Then go do it. Try to focus on how relieved you will feel when it is clear, instead of the wondering if you were to skip it. Big warm hugs coming your way.
💞
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BRR - it was cold last night! Went down to -28C (-18F) by around 9 p.m. Today it was up to -4C (about 27F). We went to my mom's for an early dinner, and my sister and her husband were visiting for a belated birthday celebration. My sister turned 51 on Thursday. She has had a tough year, acting as a support person for me, and then her husband had a (thankfully very mild) heart attack last spring. She cut her hair very short in solidarity with me during chemo, and it has grown out past her shoulders now. My hair? Not so much. I think it's about an inch long (2.5cm) now, but it is coming soft and fine, like kitten fur. Isn't curly, either. I saw my PCP on Friday, and she has convinced me to try a low, low dose of amitriptalin for my feet. I'm also going to try a lotion with capsaicin and lidocaine that is a variation of one my friend has been using, with some success, for chemo induced peripheral neuropathy. My feet do NOT like the cold weather.
Mindfulness sounds like an interesting approach. I did a little counselling last fall, but I dont think it helped much, apart from my therapist identifying my symptoms as PTSD. There is a local cancer survivors' retreat coming up that includes mindfulness, and I think I will apply. It's held in the mountains, about two hours away. I think it would be a nice break - I'm really getting sick and tired of being sick and tired.
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Hi everyone
I am exhausted after the holidays with adult kids coming and going and working full time as well. I have had some sort of pinched nerve in my neck sending tingling down my arm since before Christmas. Of course I go right to spine mets in my head but I think it is getting better. My primary tells me to take ibuprofen which I can't as am on blood thinner. The good news is no UTIs for several weeks so new prophylactic antibiotic must be working.
So when I was in the hospital in May with blood clots in lungs, my youngest DD who turns 21today, and I planned a big trip for jan thinking I needed something to look forward to. Yes I can be impulsive! Anyway in less than 2weeks we leave for 7 days of sun and ocean and I cannot wait. Hoping it energizes me!
Have a good week all!
Mo
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Mo-this will be just what you need. Some sun and warm breezes. And fun drinks with little umbrellas in them. I'm so happy for you and your daughter to get this special time together. A bit jealous to tell the truth. I will live vicariously through you!
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Thanks again everyone for the input on the mindfulness training. I'm looking into purchasing a few items, and very hopeful it will help.
Eileen...first "official" day on the job, right? Hope the kids were behaving today! 😊
PB
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