Calling all TNs
Comments
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Inspired, I am originally from Houston so I decided to go to M D Anderson there initially for treatment. I have an MO here in NE that handles my chemo according to the MDA recommendation. I just didn't like the Radiation Oncologist available up here and I lovelovelove my RO at MDA. Anyway, that's why I am going to Houston for rads. I have friends and family that I stay with.
My recurrence - yes I found it early. A small lump below my lumpectomy incision. An ultrasound also found a suspicious node. We had the fine needle biopsy report on the node in 10 minutes an it was cancerous. So was the lump. All of this was 5 months after finishing rads in the first go-round.
The first time I had a Lx without clean margins then chemo, then a 2nd Lx and SNB. 2nd Lx and the SNB were clear. Then rads. Hope this helps.
Phyllis
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Phyllis, MDA is a top notch facility, they are the ones spearheading the $3Billion Moonshot Project-so undoubtedly you are receiving state-of-the art treatment. So do you fly there? How will that work? Do you have family you will stay with there? And this coming Monday you are having the scans? When will you get those results?
It sounds like everything is working out so well for you, I just have a feeling you'll have great news on Monday's scans!
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Oh ALHusband, that is terrible! Not having the pain pump so early has got to be difficult. I had it, it was supposed to last 5 days, but ran out early on Sat AM. I had it about 2 1/2 days. The thin line to it was surgically sewn in during my surgery, so to get it out, they undid it at my breast surgeon's office. I had the drains for another week. The bs said they were ready to come out at 1 week, but the ps said things could happen, so he waited 2 weeks. That was the worst part of it. Once those go, it's like total freedom. When is your wife's first follow-up appointment?
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Phyllis, I forgot to ask .. was the small lump something we would notice, like our original lump? Was it visible or close to the surface or right below it? Is it something we can mistake for scar tissue or implant? BTW, why is it that recurrences can occur along the surgery line, I've never understood why that is, but know to look there. But why is it? I can't picture it - is that because they cut into our breast near the tumor to get access for the surgery? A few months ago I watched a mastectomy surgery on YouTube. The whole thing! I'm so glad I didn't see it before my bmx. A lady I know watched one before her surgery. That's one brave chic!
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ALHUSBAND...I got out of my double mastectomy w/tissue expanders at 4pm on Monday and was discharged at 11am on Tuesday...just like your wife I was in horrible pain, could barely move and could do nothing. It was crazy and I was in no shape to be home. It was the hospital, not my insurance...they had authorized 3 nights for this surgery.
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Thank you all so much for your support! Found out today that I'm having my port put in on Friday and will be starting chemo next week. I was freaked out with how fast things are going, but now that I read everyone's accounts on how quick this sh*t grows, I want to hug my Onc
Debra - I had the genetic test when it first came out in the mid 90's and tested negative. But, my Onc is retesting me since the technology is so much better now. They simply can't believe I could be negative with my history and now this. Should get the results in 2 weeks.
Gonna get my teeth cleaned and hair cut next week. I think I'm ok with the hair....I know it will grow back and we've got a lot of cool options from wigs to scarves and such. I'm a bit freaked about the idea of my eye brows and lashes falling out....anyone experience that? Also, what (if anything) do you wish you had done before starting chemo? Fiancé wants to take me out this weekend and do/eat/see anything I want I guess I just don't know what I'm not going to be able to do so I'm at a loss....
I am a certified personal trainer, Yoga & Spin instructor, and nutritionist, and plan on exercising as much as I am able during treatment. I'm just going to tone it down Was anyone here able to exercise during treatment or am I being overly optimistic?
I don't eat much dairy and only whole grains, fruits, & veggies plus lean proteins. I do enjoy the occasional glass of wine....is that contraindicated on chemo? Do y'all know of certain foods we are not allowed to eat?
Sorry for all the questions lol I know y'all know better than any article I could read0 -
Inspired - I will fly down tomorrow wearing my compression stocking on my left leg (not related to BC) and my lymphedema sleeve on my right arm. I don't have lymphedema, yet but I'm not taking any chances! I will be all squeezed in. I hope I don't pop something! I will stay with my girlfriend while I'm in Houston. We've been best buds since high school so she puts up with me.
I have a bone scan and X-rays on Monday and CT scans on Tuesday. I see MO, RO and surgeon on Wednesday and they will have the results of the scans. MDA also has a Cancer Prevention Center in the Mays Building where the Breast Center is. I also have gyn and gastro exams scheduled on Tuesday at the Cancer Prevention Center. I like the idea of getting the maintenance things done where they have my full BC history.
About my lump - yes it was close to the surface and I felt it immediately. I don't have an implant - the first time I had 2 lumpectomies so I still had my breast - so I did not mistake it for anything else. My MO here suggested scar tissue and did the original scans. I told her from the getgo that it was not scar tissue. It felt just like the first lump and it was painful. Mammogram and diagnostic mammogram were inconclusive as was the follow up ultrasound. She was going to follow up with an MRI but I already had an appt at MDA for a follow up with my RO so I skipped the MRI and just went to Houston. At MDA the mammogram and diagnostic mammogram was inconclusive again. However, with the ultrasound, they scanned higher in the axilla and found the node that they biopsied. I never did feel the node and neither could the RO. I'm very glad the US found it!
I think there is a lot of debate about why some recurrences happen at the surgery site. One view is that the surgery releases some cells that hang around. They must be tough little buggers because they survived 2 surgeries, chemo and rads. Others say that isn't proven. I don't know the answer.
I'm finished packing!
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Good Morning everyone.
AL Husband, your wife's story really brought back some memories for me. I remember going to bed one night after so many nights in the recliner....I could NOT get myself out of bed in the morning. Thank goodness my DH was home...scared him so bad when I started yelling for help from the upstairs bedroom! But whoever said that it is better to be home is right. The hospital is a cesspool (SP?) of germs and at times, incompetent employees. Much better to be at home with you to care for her. Lucky lady to have you there every step of the way.
Kitty, I did TAC every 3 weeks and did go to the gym on week 3. I did what I could(step class, yoga and walking) The ladies in my classes have known me for years and really encouraged me to stay strong. But be careful and listen to your body. I was also a hand washing freak.....especially at the gym, after the grocery store and any medical offices. And don't let anybody who is sick get near you while in chemo! And I did have a glass or two of wine during treatment....but your taste will be off kilter while in treatment so you may not enjoy some of your favorite foods like you did before.
I'm an oldie here on the TN thread.....Don't post often but read almost everyday. Wishing everyone strength and comfort.
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Inspired...follow up is Friday. Doc says 2 of the 4 drains will probably come out at first follow up, and, judging from the numbers I'm recording as I empty them...that's probably what will happen. She's doing < 15 ml/day consistently on 2 of them. The other 2 are consistently higher. The PS wants < 15 ml/24 hrs for "a few days" before he'll take them out. They (drains) are itching the poor woman like crazy now! She was sneaky this morning! I awakened to find her up and about and she had made a pot of coffee and poured herself a cup. This is a union shop here and that's supposed to be my job! I have to say this. For a couple of days her stiff upper body walk, coupled with her sorta loopy facial expression, would have made her a good candidate for a lead role in a zombie movie. <slap!> There. Don't worry ladies. I just slapped my own face for that comment...on behalf of all of you.
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Oh ALHusband, I remember drains being itchy! I also didn't like them tugging on me, so we bought surgical tape and secured it more at the entry point to the skin, and that really helped. I had 2 drains. For the bandages, those started to itch me, so we started trimming the excess tape each day until I got to go in and get it peeled off.
I was thinking about how diifficult this is for you wife, and was also thinking she could be in more pain due to how much they filled her expanders. Usually the expanders go in much smaller than the original breast tissue taken out, to allow tiime for that pec muscle to strengthen and mature to hold the implants in place, since they typically place the expanders behind the pec muscle. It can be very sore to start off with the exact same volume that came out, so she might be more uncomfortable there then I was. I found I didn't need to use the muscle spasm drugs, but did use the Percoset for 4 days. I liked it because it had less Tylenol in it than the Vicodin/
Oh I'm so happy to hear that she was up moving around and getting coffee!! Good for her - that makes me smile from ear to ear!!
Tell her we all said hello!!!!!
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Phyllis,
Wow ... it just goes to show you how we have to know our own bodies and be our own advocate! I'll be thinking of you every minute on Monday!
Please update when you can, and safe travels. You are in my prayers. xoxo
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Oh those lovely drains - when I had mine in I was working in the kitchen and caught one of them on the cupboard pull. The tube stretched quite far and it sort of snapped me back. I thought my husband was going to faint lol, I don't know what I would have done if it pulled out. He's much too big for me to pick up off the floor.
Where I live the mastectomy procedure is day surgery. I was home early afternoon on the same day however I didn't have expanders or implants. Good old Tylenol#3 for pain and that's all they give. I had stronger pain pills for an ulcerated tooth.
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Al Husband, So glad to hear you wife back home and path report ok. Your advice is spot on, I have stopped worrying until I have something to worry about !
I finished chemo 10th June and now have 3" long curls, have needed two hair trims recently to keep looking tidy. Once it starts it grows really quickly.My bonus is I have ALWAYS wanted curls
.Blessings and healing to you all.
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Checking in to say "Hi" and see what all the TN sisters are up to. I'm over a year out of my DX and would be on my second chemo about now last year. Strange to think about. My hair is growing but lordy do I look weird.
I'm feeling lots better and need to get my life back in order after the shake up. Where did all these papers come from? Anyone else with a messy house? How to overcome it? Anyway, messy house, meh. I need to get back to exercising after a 2 day break. The end of Summer makes me a tad bit sad.
I'm reviewing the studies about exercise, low fat diet and supplements. Getting rid of toxins and wondering if I should move to the country.
What about you?
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Hello lovely ladies, Oh I just got so emotional reading Annie's post from July when she says that she misses me. Oh! I am so so sorry for not writing here in a while and I am so sorry I missed all your posts. Annie, honey, I am always around, but this time stretched out to be too long, and I will explain. I have major issues going on with my eyes. I had mentioned previously. It is so bad, that I am thinking of quiting my job. I have had at least 17 - 18 vists with doctors, but I am getting nowhere. Finally yesterday I learned that maybe it is happening due to sleep apnea and me not using my CPAP machine. I have so much pain and distress in my left eye that it is unimagineable. I squint and close my left eye after lunch almost every day at work. I try to keep only my right eye open. Glasses were checked, I treated them for allergy and dry eyes, nothing worked. The pain in my forehead is so bad. I think my eyes are not sleeping, literally, honestly. Anyway, so I stay away from the computer screen when I get home, no computer, no way..... can't. That is why I have been away. I used my CPAP machine last night and let's see if it improves. Otherwise, I feel that my life is over. If I can't look athe computer screen, how will I live in this world? The doctor says the vision is fine, but the pain, the glare, the water, what is going on? I yelled at my eye doc yesterday, saying don't even try to look at my eye with your stupid lights, what is the point when you can't even tell me what is causing my pain and discomfort.Ladies, I haven't been able to read many of the above posts. I will try to read only a few every day, but I just want to apologize and say to you all, I will always come back. I hope I will always have vision in my eye to be able to see all your posts. Love you all, and Annie dear, thank you so much for thinking about me. Hope life is good to you and yours!
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kittykate78 - I do wish I had had a chance to get my teeth cleaned prior to chemo, not because of any problems but I REALLY don't want any cavities! Unfortunately, I was scheduled for my surgery first and then chemo but on day of surgery (lumpectomy) they discovered the cancer tracked out along the biopsy line. That was a Thursday and Monday I started chemo so I didn't get to go.
My eyebrows and lashes remained through the EC but started thinning after a few of the Taxol treatments (I want to say #4 maybe?). It took a few tries but I found the right color combo of two eyebrow pencils and have gotten much better and filling them in. Luckily some of the brows are left so I have a guideline. I also started using false lashes this week which is actually fun! You shoud have seen me the first day - they were quite askew and no where near the lash line but by the third day I started getting them right on the first try. I have a couple of different pairs just to mix it up. ELF has a pair for $1 at Target and I have those and a few others. Have fun!
I would say eat your favorite foods before you start. My taste buds were REALLY off during EC and not as much with Taxol but I can't wait until it returns to normal.
I continued to exercise, though toned down like you plan. I love to run and am fairly klutzy so I opted to walk instead of run to avoid falling and getting cuts or scrapes which could get infected, etc. I continue to do light weights and use my elliptical and I find it really helps combat the neuropathy. I think Yoga and Spinning would be great for you!
My "chemo class" nurse advised against eating at salad bars and potlucks because the food sits out and lots of hands get into it and you want to avoid germs. They recommended washing fruits and vegetables thoroughly (a Salad Spinner is a good idea) and if you want a salad at a restaurant make sure it's at a reputable place (i.e. avoid places with ratings that aren't an A) again to avoid any contamination. My doctor didn't say anything about not drinking though I've definitely reduced it as I've read it's better since the chemo is so taxing on your body anyway. I've been having a glass of wine once a week and one beer on a Friday from time to time just to be safe. I found with the EC though it all tasted weird so I didn't want to drink it anyway!
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2 of 4 drains are out now. The other two will most likely come out on Monday! Woohoo!
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Yay AL! Definitely worth celebrating.
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Hi, I am new here, not exactly where I want to be. I have been dx'd with TNBC,stage 3, grade2. I'm almost finished my workup and will have port placed next week. I'm receiving chemo first then surgery. I believe I will get Taxol first for 12 weeks. I'm a RN at a fertility clinic and am planning on continuing to work. Can anyone give me some hints to try and work through this? I will probably have my treatments on Fridays to give me the weekend to recover. Thanks!
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Welcome Gramo2boys, sorry you have to be here but at the same time you won't find a better place to share the ups and downs of this cancer journey we are all on. It's awesome that you can have your treatment first before surgery. I wish I had done that. It's the only way to know if your treatments are working without reoccurance.
I was a wimp (plus I had an excellent health and disability plan) I stayed home from work for over a year and have only just returned in August. I found that the first couple of days after chemo I felt great while the steroids were working then about day 3 or 4 it would hit and I would feel crappy (Not ill just blah). I hear that the 12 weeks of Taxol is easier to handle with less se's.
You will soon meet many more of the ladies and gents that are on this thread, feel free to ask or tell us anything.
Cheers,
J.
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Chemo finished yesterday:). MO mentioned I could try tamoxifen as one of my path reports said I was 1-4 percent positive. The other said zero and it was from the core biopsy. I'm thinking I don't want to bother w it. He also said I could do xeloda as it had shown some promise in tnbc to prevent recurrence. He wasn't excited to recommend either but was sharing options. What are your thoughts?
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I haven't posted in awhile and was out of touch for a few months. It is so sad about Inmate. She helped so many on here, including me. Fly free sweet angel. Also sad to hear about Luv's struggles. Welcome to all the newbies. You've found the right place. Warning, this is long - I can't ever seem to write a short message.
I am happy to see a lot of my friends still around. I need to ask some advice. I finished chemo last July and decided to go to a different BS that seemed to have better follow-up screening. My BS had dragged his feet about getting me to surgery (over 2 months!) and could have cost me my life as it was starting to affect my lymph nodes and had doubled in size. My MO actually had to call my BS to say get me to surgery ASAP - enough waiting around! The BS was also talking about going to only a mamm once a year. I was not comfortable with that. I feel we (TNBC) need to be followed closely for the first 3-5 years when our chances of recurrence are highest. So, I went to a new BS which had great screenings, find out results same day, etc. but it was a 9-hour day. Yes, 9 hours. 1.5 hour drive to/from and 6 hours waiting around. On top of that, I found a new lump in righty about a month ago and call to make an appointment and they said it would take 6 WEEKS to get it looked at. That is unacceptable to me.
So, long story longer, I went back to original BS because I didn't know what to do. It still took 10 days to get seen. What does it take to get prompt attention when you are at high risk??! Anyway, I saw him several weeks ago and he did an ultrasound and says it looks like a cyst. The mass was about 8 mm in size. Since I was due for my 6 mth mamm, he scheduled it to have someone else take a look, but again, it was another 3 week wait. I got anxious so called the mamm place and asked if they had a cancellation. They got me in today. I also called my MO and got to see him this morning. I LOVE my MO. He is totally supportive and said he would talk to the BS and try to get him on the same page as me.
Anyway, my MO also felt the lump. So, I went to the mamm. The radiologist says he sees nothing. Then, he had an US done and didn't find anything but maybe a 2 mm spot. The US technician seemed very inexperienced and, after taking off the marker where the lump was, kept asking me if this was the place. How the heck could I tell laying down with a big wand over half my breast (I'm small LOL)?
Now what? My MO is supposed to call me back on Monday after talking with the BS. I do not feel great about the mamm. I have dense breasts and don't really feel mamms do any good. My sister found her own cancer after she got an "all clear" on a mamm. I found my own tumor too. The radiologist only said that it is "probably" not cancer but since I can feel a lump (insinuating nothing is there), I should get another US in 6 months! Holly sh**t. My BS and MO both felt it too! IF it is cancer, it could spread everywhere by 6 months. I am really feeling anxious now. I know my MO will insist on any test I want. I just don't know what to do. Any suggestions out there? What things should I consider?
As a side note, the other place that I went for my last mamm totally messed up my leftie/lumpectomy side. She pulled and squished so hard (me crying through it all in pain) that now I am on pain med's. She obviously ripped scar tissue and/or nerves. The lumpectomy area now hurts and burns constantly as if I just had surgery. The first mamm I had after treatment, it hurt for about 2 weeks. The last one was 6 months ago and I have been pain-ridden since. Has anyone else experienced this? The person was so rough and uncaring. Thankfully, today, my old place for mamm has a great technician and she was very gentle and stopped when I said, otherwise, I told them I would not go through another one on that side. Just got home and took a pain med, but I really need an Ativan!
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I also love seeing all the kitty lovers and talk about how they help us through these tough times. I am up to 7 cats of my own, and 5 fosters. The new ones are taking a lot of my time - 3 are Felv positive. I have a couple special-needs too. I have a one-eyed kitty.
crs - I was zero percent but others on here will hopefully help you as a few of them have taken tamoxifen. My feeling is that early on, you should fight this beast with all available guns.
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Gramof2boys - I worked part-time through chemo but found that about 4-5 days after chemo was the worst and took those days off. I had chemo on Mon and Fri-Sat were the worst. You will find what works (pun intented) for you. Unlike most others, I had a worst time with Taxol. A-C was easier for me. I had neuropathy for almost a year after Taxol. I still need to get up slow in the morning and get my hands/feet moving for awhile until the "thickness" feeling goes away but at least they aren't numb anymore.
Lovely - I sure hope it is only CPAP use. That is awful.
AL - Yay for 2 drains out! Do let us know how she is doing.
Queen - I am still trying to dig my way out of all the house and yard maintenance that went by the wayside during treatment. I'm slowly getting there. I am trying to exercise more, usually 2 miles every other day and some Yoga. I am taking Metformin to keep insulin down thanks to my MO when I told him about the study. I also modified my diet. I was already a vegetarian but have been cutting out all carbs and most sugar. Well, I lost TOO much weight and was down to 97 lb. My MO made me cut out half the Metformin and said that if I didn't gain some weight back, he would recommend stopping Metformin completely, so I added back some carbs and am up to 102 lb (with clothes) now - tee hee. I already live in the country on 30 wooded acres and love it!
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Catwhispurr,
Your post gives me hope that my neuropathy may still go away. I am 8 1/2 months post-taxol and I still have numbness in all toes and the bottom of my feet. I really haven't noticed it improving. Did yours improve all at once?0 -
Placid - I don't know exactly when it went mostly away. I think it was more gradual but since I had been living with it, I didn't notice improvement really until one day it dawned on me that I could get up in the morning and I was able to move my fingers and not fall over. I think it happened pretty fast once it started improving. I still am a little stiff right when I get up in the morning but it quickly dissipates.
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Oh! Annie.... I am laughing so hard at your post.
Not posted much these days but have read all and thinking of you all.
Sorry the newbies have to be here - best place you could land though through these crappy times. You will receive the most wonderful support.
Love and hugs to all xxxxxxxxxxx
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placid44....It has been 18 months since Taxol and I still have the numbness on the bottoms of both feet and all toes. It is the same as it was in the beginning BUT I have NO pain so I don't really worry about it. It's weird tho...feels like there is a piece of kleenex or silk inside my shoe when I wear them. With flip flops, there is no difference from before.
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Cat Whispur:
I had a similar experience, in that I had something that I felt and all three docs said it was scar tissue, but I insisted on mammo/us. Both showed nothing, but Radiologist said it seemed like a piece of fat. I had an MRI 3 months later, as was put on a short-term follow-up to double check it, but I insisted on an MRI. MRI was read two times and they ordered a new technology called Diffusion Imaging, it's an addon to the current MRI standards, uses water technology to assist. That came back as a 98% probability of nothing, birads 3, which is a normal response on something like this with a history of bc, and I verified that by posting a question at John Hopkins online. My BS who seems to be of a laid back fashion, put me on a 4-month come back in to see him, and the MRI they said to come back for a short-term follow-up with an u/s.
At that time I took action. I was not going to be waiting around, when I could get clarification now. I went to my PS who agreed to do surgery and send tissue to lab. He needed to exchange my implants anyways, so I knew I could work out something with him. He sent 5 areas of scar tissue that he removed and sent them to the lab, but told my husband in the waiting room that everything looked normal. The lab also reported back that it was normal.
I just feel for myself I wouldn't have closure without getting that tissue to a lab, so I went the path of least resistance, which was my PS.
I do think in your case it is also probably nothing, but do consider getting it biopsied or request a MRI with Diffusion Weighted Imaging for immediate scheduling.
I really feel you do not have a recurrence, but keep pushing forward until you get closure on the issue.
My BS has me on a protocol that I will have a u/s and MRI once a year each, with scheduling at every six months, so that way surveillance is every six months. He agreed to this protocol for me, but I did have to bring it up and approach him about it.
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