Calling all TNs
Comments
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Glad I could help! For all of us, It's natural to want to make sure we had the best treatment, but after the dust settles and you are done with treatment, try not to do the 'what if' scenario and second guess your decision or your doctor's treatment plan for you. Remember that your doctor sees a lot of information about your case that we don't. We basically know your grade and size and stage. Even the size is unclear, because as you can see it shows us with a default of 1cm on our profile (when the range is 1.0 to 1.9 cm) and then it defaults to the 1cm for the profile info when we post. And those that have 2 cm listed, that is a default profile wording, as the range is 2.0 - 2.9 cm. Your doctor has a clear view of everything, such as the detailed pathology report, your age, your family health history, etc. Several things come into play when your team makes recommendations for you. So if in the end you are left wondering if you had the best treatment, just remember that your doctor absolutely wants you to have the best outcome, and so he/she has custom tailored a very specific approach for you.
Now how do I know all this? Because I was the one who challenged my doctor all throughout my treatment about my treatment.
) It turns out, he is the doctor and I'm the patient! LOL Just a little humor there. But seriously, one thing I've learned is that the unique pathologies of all of us really does influence what a doctor recommends. Once I understood that, I was able to accept it, and feel confident that I had excellent treatment.0 -
LeeAlice - I had TAC as well. PM me with questions.
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Forgot who mentioned this, but someday mentioned if they only did a MX, they would need to still have mammos, and their mammo did not detect the bc. Just wanted everyone to know, if you feel more confident with an ultrasound, or an ultrasound paired with a mammo, please let your BS know about this. My BS has not had any push back on this from insurance. I went to my BS with surveillance recommendations from a radiation oncologist and from some other bc members here, and we do the ultrasound and MRI yearly, but flip flop each procedure so that every 6 months I go through one type of surveillance, one time it will be u/s and the next time it will be MRI. Keep vigilante and if you feel you need a particular screening process, be sure to discuss the benefits of that with your doctor. Like many of you posted, the mammo did not show my bc, but my ultrasound did.
On a random note: Did somebody post that they had their tissue expanders exchanged at the same time as surgery to remove their ovaries? If so, please PM me - I have a question to ask.
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Great story I just read on a news website.
There is a lady on our bc site who last posted in 2012, she had TNBC diagnosis and was done with treatment but having a really hard time dealing with everything. Her last post showed the extreme anxiety she had, she was really upset and trying to get help on finding out what date we calculate the date from to get to the 5 years. One of her posts even mentioned what's the point of trying to do certain things if it might come back? Well I did some more research online and found out that she had been featured in an internet story about young Moms who are diagnosed with BC. I'm bringing this up , because many times when someone leaves the boards for a long time and we don't see them post for a long time, people wonder if something happened to them, such as a recurrence. Well, I'm happy to report to everyone, she is doing so well now, that she now has a new baby girl! She had a little boy before I think. She was 29 at the time of diagnosis.
I hope this gives all of you young mothers some hope and inspiration. She might also have been BRCA +. It's hard to tell the way the story was written, flip flopping between her and another lady, and then mentioning a third lady saying that because of her she got the testing done and would have to have a surgery, but didn't say if that was a sister or what. However, the overall theme on her story was remarkable and heart warming! The story was published 4 months ago and mentioned that she remains cancer-free, they ran scans on her after the pregnancy and everything was normal.
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Its been a long time since I posted anything, but decided to reach out again....
I am coming to my one year anniversary on March 4th..woo hoo.
I have a question...does anyone have info about secondary bladder cancer? I am going in for a cystoscopy (sp) due to having a small amt of blood in two separate urine tests. The scope is for the purpose of looking at the lining of my bladder. The third urine test is going to go through path testing to see if there are any cancer cells. I have no symptoms, and feel like its much ado about nothing, but have agreed to go in for more tests.
I will do some reserching, but welcome input from anyone. I wish you all well. lori
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Oh Lori, congrats on your March 4th date coming up!! I'm wishing you all the best with this newest development. I do not have any info about bladder cancer. I do hope it's something unrelated of course. Did they provide any other explanations of what it could be from? My girlfriend had blood in her urine one time, and they determined it to be from an internal injury that she had sustained a few months earlier from falling off a horse. Please keep us posted!
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hi everybody..
Have been reading all your posts, but never could sit down and reply because of this severe burning and itching sensation all over and particularly more under my feet and hands. This is because of Paclitaxel ( Taxol family). I have to keep ice packs under my hands and feet most of the time and all the medicines prescribed to me have not worked. I sometimes feel like tearing my skin apart..it burns and itches so much. Need to have a sleeping pill at night, and once all this is over, will have to wean myself off these pills. Lets see..Tomorrow is my 8th and last taxol and he will give a full dose ( no dose reduction this time since my last AC had to be reduced by 10 percent). Will just finish it off..last resort is immunosuppresant steroids, to handle my immune system directly and I dont want to take them.
Regarding the discussion going on as to what to choose, neoadjuvant or adjuvant chemo. Neoadjuvant will mostly be a prediction tool. In case you get PCR you consider yourself mostly cured. In case you dont get PCR then you know that you have a fair chance of recurrence. Neoadjuvant also helps in monitoring how your tumor is responding to chemo. They get the chance to change drugs just in case the tumor doesnt respond to one combination. But then if you are sure that your tumor has not spread to lymph nodes etc then the time spent on changing drugs etc will give time to the tumor to grow, after all these tumors have the fasted rate of growth in stage 1. Moreover, we donot have too many chemo drugs to choose from. Also there is one subtype of TNBC which is highly chemo resistent. Just in case the tumor happens to be one of them and the tumor is in operable condition( as in, it has not spread), then better to do surgery...surgery does offer a good survival advantage, for early stage tumors. There is a test which soon to arrive is CTC ( Circulating cancer cells), which will help monitor the status of circulating cells in the adjuvant setting ( thats a big disadvantage for us who opted for adjuvant chemo, is we cannot measure how the circulating cells are responding to our chemo drugs)
Also in my case, my core biopsy results said that i am pure triple negative. But my pathology report after lumpectomy said that my tumor has 15 percent estrogen progesterone positive cells too, my onco will repeat the test and i might need to take tamoxiflin for those 15 percent cells too. There are also cases where the core biopsy says that a tumor is pure triple negative but the pathology report post surgery says that its pure triple negative and also pure medullary and hence the woman is not a candidate for chemo, if its stage 1, pure medullary TnBC. So the entire tumor speaks more about itself than just 2 strands taken in core biopsy. After all TNBC is an umbrella of many diseases..we all are TNBC patients but each of us have different diseases actually. But unfortunately we all get similar treatments.
There was also a mention about relation between stress and breast cancer. Yes, it has been proven in the animal model that long term exposure to stress and social isolation triggers cancerous growth. The same model can be extrapolated for human beings too. Also it has been observed in patients who have already had one cancer episode, that for most of them a stressful event in life triggers a recurrence( most of them ..not all).
Lots of love to all... lets all get through this healthily
I now go to the kitchen and get my ice packs and tackle this itch which is again coming up.. I just hate chemo, somebody please get a targeted therapy soon!!!
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Thank you all for the prayers and good thoughts and vibes going out for my brother. He has a long road to travel but I am thankful he is still hear to travel it. I keep telling myself that too.
I just don't know what is wrong with me. I know all the right things I need to be doing, but I just can't seem to make myself do them. I have to get in to see the surgeon soon though as there are a few little knots in my chest and I am hoping it is just from the radiation because when my cancer returned I did not feel it. What as me worried is my eyes.........they look like they did before.. lifeless....:( of course I don't have to tell you all where the mind goes.
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all my wishes for your brother Stupidboob! He has a very very brave sister by his side ..
pls let us know what the doc says about your chest ..i hope this is because of rads.
And do keep us updated lori. I pray you complete many more cancer- anniversaries!
Inspired- Thanks for all the links you keep sharing with us. They are very useful
Jianchi: how did your 3rd taxol go?
I finish my 8th chemo- taxol tomorrow. And I hope all of us never ever have to go through this chemo and cancer business again in our lives... Next will come 30 Rads. One after another...this never seems to end.
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BanR I had exactly the same thing with Taxol. I was supposed to do 12 but only managed 7 because of the neuropathy in my fingers but worse than that was the terrible itch that Taxol gave me. It nearly drove me mad. I itched and scratched all day and all night. I even cried with it because I was so tired and the bloody itch just would not stop. I too felt like ripping my skin off. As soon as I got into bed and got warm it would start again with very little time in between scratching, not long enough to fall asleep. I would get up and walk around the house scratching for hours. I tried all sorts of creams from the docs but nothing held it off for long. All my hands had red blotches all over them. So you have my deepest sympathy because I know exactly what it is like. I also had a reaction to my very first Taxol so I never want the damn stuff again. Give me the red devil any time rather than Taxol.
Inspired and BanR thanks for the info on studies. I am going to get my histology report out again and take another look.
Stupidboob glad to hear your brother Bill is doing ok. Could you be feeling depressed which wouldn't be surprising after all that you have been through. Hope you manage to get in to see your surgeon soon and gets those knots assessed.
Lori great that you are now one year out woohoo. Is the blood in your urine a lot or only a little. Have you been able to see the blood or did it just show up in a urine analysis. A little blood in the urine is usually nothing to worry about and could be a bladder infection called haematuria or it could be related to stones or even an overactive bladder. It's not always related to bladder cancer. Best get it checked though for peace of mind.
Saw my BS today. He said all is good but wants me to have CT scan just to check on my ovaries because of my mums cancer. I'm cool with that. (Simple) Forgot completely to ask about having the BRAC gene test again, duh. Only seeing him every four months now unless something (crops up!).
So tired today because it's been so hot and we have so much work. Trying not to get stressed about the amount we have to do. Have a good day ladies. Keep well.
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hi
For everyone with worrys, I hope for you some relief and hope your situations have happy results
For those waiting on surgery, I hope for you good drugs
and quick healing.For those making decisions, strong support and amazing medical teams
Love for everyone, truly
I finished chemo yesterday with 16 treatments under my belt, 3 surgeries with a few to go and today I feel a big sense of relief. I have my follow up and testing next week but I'm very hopeful after my brain MRI and chest CT came back clear earlier this month.
My brain is just going a mile a minute thinking about what's next in my life with my amazing husband and 3 beautiful daughters. I feel like I missed so much life the last 6 months and I just want to jump back in. I know I can't put the cart before the horse so I will begrudgingly be patient with myself while I try to regain my strength, lose some weight (the toughest one) and just regain a routine not focused around treatments and doctors appt.
My questions for you incredibly strong ladies is about the what's next stage- what were some of the most important questions you had for you medical team post treatment? I know I will be put into the survivorship program with my oncologist office to handle the transition but any incite will be appreciated, I doubt want to kick myself later cause I missed the opportunity to ask good question while face to face with my docs!
Thanks in advance
Breezy
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Sorry that I have been absent. Stupidboob: all my best wishes to your brother! BanR: sorry to hear about your itchy side effects, and hopefully, you are finishing up! My third one remains the same, no major SEs. I get my last chemo next Monday.
M husband overheard the news this morning on TV says that Evista can help with TNBC? Anybody knows this?
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BanR - Congrats on your last Taxol tomorrow! GREAT JOB! I hope you celebrate with something special!
I want to point out one thing -- about those who do not have a PCR (pathological complete response). My Onc told me that even those who have a Partial Response, that "they know those patients will do very well still". He did not indicate at all that they were at a higher rate for recurrence, but in the context we were just talking overall survival. and he said that even with a Partial Response those patients will also do very well overall.
BanR - Ask your Onc to run the GenOptix Test - this is the state-of-the-art test in the industry which was created because as many as 20% of women are misclassified of their ER status. This test is the latest technology and is extremely specific. http://www.genoptix.com/nexcourse_breast_ERPR.php... I had 4 different tests ran on my slides to confirm and reconfirm. Similar to you, my biopsy showed a 13%ER, something showed a 4%, and my Onc had me on Tamoxifen for 1 week, when the GenOptix text proved it was TNBC at 100%. My Onc described the difference in the testing process, it was quite complicated, but very apparent how dynamic this new test is. Please ask for it - the technology is excellent and he considered it the best.
I have wondered about the stress/bc connection. I have tried to find evidence but it seems all studies I looked at could not conclude either way ... however it is interesting that you said social isolation. I also think without much sun could have also been a contributor. Or if not a contributor, a mechanism that wasn't there to keep this away, so to speak. My D level was a 12, probably because of my recluse work habits. I think I will need to work on both of these angles!!
Thank you for your post - it has given me more things to think about and to try and harness into some positive changes in my environment.
GenOptix
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inspired:
thanks for info about the test. will ask him tomorrow for sure.
social isolation and stress have strong links with cancer..i have come across a lot of articles .. sending a few links of studies talking about the same in animal model.
http://news.bbc.co.uk/2/hi/health/8279425.stm
http://www.sciencedaily.com/releases/2009/09/09092...
http://www.ncbi.nlm.nih.gov/pubmed/22610067
http://www.psychologytoday.com/blog/consequential-...
http://cancerpreventionresearch.aacrjournals.org/c...
Stress, depression, social isolation, unhappiness etc do trigger a lot of other diseases so why not cancer too. Just like you even I feel that one of these could have triggered mine too. I met a woman in the hospital who was getting treated for a recurrence. She said she was fine for 4 years but then her elder sister expired and 1 year after that she got this recurrence...maybe a trigger, may not be.
But cancer needs an environment to grow. Let us not give it that environment anymore...I will try my level best to keep myself away from situations which create stress/depression/ isolation etc.
Jianchi: Havent heard about it, will ask my doctor. Good to hear that your taxols are going fine. I finish off tomorrow and you finish on Monday..High Five for that!!
Cocker: Thanks for your words of encouragement. I need ice under my feet now and then. Will carry few ice packs for chemo tomorrow too...else this burning sensation wont allow me to sit for 6 hours.
sending warm wishes to everybody here..
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I love that we are having some great sharing with research here. I came across this link yesterday to a website, and I noticed that on the column on the left, there is a link to the bladder cancer in the left column Lori.
Everyone the link when you open it up talks about how meat can feed cancer cells. I have not read the site or article yet, but I'm posting here in case you find it worthy to read. http://www.cancertutor.com/faq_meat/
I was thinking more about the stress issue. I haven't read the links yet BanR - going there right now ... but wonder if it's how we respond to stress. Maybe once we enter that situation, we stay up all night (not supposed to be good for the lack of melatonin issue), and perhaps we lose our eating habits, stop exercising, start drinking, etc. Also, once our immune system is compromised from stress, then like you said, that harbors the environment for stress to negatively impact us. I think now more than ever, when stressed, I try to go workout, I think it's supposed to be very effective and controlling the negative impact of stress. I will also try to do research on this soon for us.
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PS - I have also wondered why the cancer rate is so low in the prison population. I rarely hear of anyone having cancer in the system. They do get daily vitamin D though, and usually do not eat processed food, as everything is made in the kitchens in large batches there.
Also there was a story of that researcher who was in Alaska and she developed bc - they had to drop down medicine to her until she could be rescued or finish her research and then be rescued. I know I'm missing some facts on that story and will try to find it. It was basically she was alone in this arctic region, and got bc. Because of the lack of sunshine I have always wondered if that is what it was from, lack of vitamin D.
Two things that I did not have much of the two years prior to the dx was the social stuff during the day and lack of direct sunshine. Yet also, I had just started drinking coffee daily, diet coke and eating lots of turkey meat during those 2 years. I'm suspicious of it all, and now I've cut out all three items 100%. I drink only water and organic green tea (from Canada) daily. Pepsi has changed their caramel coloring in CA due to 4-Mel being possibly carcinogenic. Other regions, like NY, still have Pepsi with 6x higher the amount of this chemical than is approved under the CA standards for CA
http://www.grubstreet.com/2014/01/pepsi-one-carcin...
For me, I really have also felt it could have also been the chemicals. Chemicals change things in your body, which I didn't really think about too deeply before this dx. I am okay with eating dark chocolate though!
Coffee is also known to be a possible carcinogenic and in CA at Starbucks and other coffee places in CA there are Prop 65 warnings about the potential carcinogens from coffee. In my research, the darker the roast the higher the level of possible carcinogens.
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Its our response to stress and also because of compromised immune system plus increase in cortisol etc, the cells in the breast undergo changes. So its psychology plus biology both. I could come down to the following points which triggers breast cancer:
1> early onset of menstrual cycles
2> not completing pregnancy full term
3> taking birth control hormonal pills
4> not breast feeding the child enough. It should be exclusive breast milk for 6 months and extended feed till 2 years
5> having first child after age 30
6> never had children
7> obesity, lack of exercise, alcohol, lack of at least 4 to 5 servings of fruits and vegetables daily.
8> stress/ social isolation etc
9> hypothyroidism ( under study and there are various views to this)
10> brca1 and 2 gene
11> other inherited genes (under study- not known till now )
12> pollution in general which has penetrated our eco system
13> increased exposure to radiations of all kinds..
did i miss any point? for me i am sure its 8,9,12,13..maybe 11, who knows! also i had my child at 30, so maybe i was in the boundary line!
regarding the meat and cancer issue..even i had come cross it. It also speaks about diary products and meat both. But people who consume more meat maybe consume less veggies n fruits, maybe there can be an indirect link.
inspired: you mentioned once that you take metformin everyday as prevention ..i hope i got the name correctly. Do confirm, will discuss this with my oncologist too.
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Ladies & Al Husband too!
Just got back from giving my 3 month blood donation (small joke) for my check up tests, but when I saw my primary doctor he told me he wanted to chat with me for a minute. He told me he went to seminar recently & was discussing (other topics than seminar) with a oncology researcher. He indicated it looks as if people going in for chemo will be asked to fast for 24 to 48 hours before to deny the cancer cells their glucose fix that way when chemo hits the cancer cells are more open to they drugs. Eating is 6 to 8 hours after chemo.
He thought I might like to pass it on. That's all I know. But makes some sense to me.
Have a good day All!!
Marsha
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Inspired: I asked my onco that day if low Vitamin d level is one more trigger for cancer. I said no.
But yes you said..processed food and excess consumption of caffeine has a good link with cancer...that makes point number 14 in my list!!
But I have something interesting to share. There is a proven study that during chemo, getting high dose vitamin c helps chemo work better. High dose as in Vitamin C directly injected in the body.
http://www.bbc.co.uk/news/health-26038460
http://www.webmd.com/cancer/news/20140205/intraven...
http://www.independent.co.uk/news/science/vitamin-...
This study began way back in 1976 and by now its almost certain. Vitamin C kills cancer cells without harming normal cells..so ladies, lets go high on Vit C...
LookingForw: thanks for sharing the info! I just remembered suddenly, before administering anesthesia, they asked me to fast for 12 hours and this time I happily waited for my surgery, without food n water..just thinking that my tumor cells are starving with me too and soon the little fellow will be pulled out of me and will be killed. The very thought gave me lot of happiness. I wish there was some way to locate circulating tumor cells too, so that we get the same happiness during our adjuvant chemo sessions too..our suffering suddenly becomes less when we realize that those little fellows are suffering too
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There is an Onc who documented his patients - they came from all different background, cities, upbringings, etc. The ones who were TNBC, almost every single one had a vitamin D deficiency. I have read numerous sources that correlate low Vit D increases risk for breast cancer. So much so, that many Oncs are now running the test on their patients.
Regarding no eating before chemo --- I wonder if they borrowed that idea from Metformin. Metformin is in some trials exploring that when added to a chemo regimen produces better results than chemo regimen without Metformin.
Yes, I am on Metformin. I will send you the links in a PM so that you can share with your Onc!
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BanR - you have a typo? You said it was not a trigger or your Onc? The word says "I" instead of "He" ... so I'm just verifying. Maybe he doesn't like the word trigger and is correlating the word trigger to something that spontaneously happens in our body, vs attributes to, compromises us, put us at an increased risk, etc.
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Okay, I will try to find you all something. My genetic counselor explained this, and I had already seen a table about this. Many researchers feel that cancer is actually something that happens after repeated insults (insults in this example meant events). It showed a square with boxes in it, and each box had a name. Environmental, stress, BRCA gene, etc. The more boxes you had filled in the more your risk of bc increased in percentages. My genetic counselor told me it was great that I was not BRCA positive otherwise it would mean that I had one more box filled in, and when you connect enough of those boxes, if you have enough of them filled in, your risk of cancer is increased. Each box increases that risk. One box said diet. Then if you click on that box, it takes you to another page that shows you a huge long list of possibilities of things for that box. It might sound weird the way I explained it, but it was very technical and scientific. So I think with the list you made, it reminds me .... how many of those things are in separate boxes and how many boxes do we have colored in?
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I was trying to research the TNBC and Evista that was asked about earlier today ... and in doing so came across this article.
"Engineered virus effective against triple negative breast cancer cells, study shows" http://www.sciencedaily.com/releases/2014/01/14013...
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I don't doubt that the fasting came via metformin trials as he said he might put me on metformim if my tests (blood work results) indicate it is not contraindicated for me & if my system will not have an allergic reaction to it. For me it is always a guessing game on my system & drugs.
The tests I had done today (a laundry list)
CEA. CA 15.3. CA 125. CA 27.29
CBC, Comprehensive metabolic
Vit B 12, Vit D3, Thyroid and a
Urinalysis
This is what my MO wants done. Easier to go to my primary & he does them as soon as I walk in office. I am spoiled. I go see BS & MO 1st week of June. I just feel better if my results come back in same ranges as always have been.
As to blood in urine. I have a genetic predisposition to that problem. It has been in the females (via Mothers line) for 4 generations that we know of. We just watch the amount of trace in urine.
Inspired. I tried to go to the link, says page not exist or under construction. Can you retry posting it?
Take care all
Marsha
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Thanks for the response....you are all so nice. BanR...what a trooper, to deal with all the itching. Stupid Boob....was it you with the lifeless eyes. I can so relate. I am good if I can go a week without crying. I see a Dr., and try my best to get beyond my despair; and keep busy. For me sitting around and hanging on the computer gets to me, as well as watching too much t.v. Sometimes its one hour at a time. Today it was sunny and I made some decisions about my heath (non) issues, so I am feeling better.... I am not going through with the bladder scope, I am asymptomatic and feel it is not neccessary. My onc called today, and said he is not concerned about my platlets....The Plastic surgeon is the one who is refusing to do my reconstructive surgery because of platlets. My onc said he will talk to him and I am basically stable and safe to have surgery. Don't know if it will work, cuz I am told the plastic surgeon is a control freak, and has a rep for being unreasonable.. Take Care...Lori
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Breezy - CONGRATS on being finished!
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Lori,
Do you have a choice of PSs? You shouldn't have to fight this hard at this stage of your treatment. At the very least can you get a second opinion from another PS?
Hugs,
Peggy
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Lori, my PS also had very strict guidelines (no caffeine for 6 months) - also my Breast Surgeon said my drains were ready to come out at 1 week, but Plastic Surgeon made me keep them for 2 weeks. Regarding labs, my PCP wanted me to tell my Onc that my wbc was low. I looked at the number, and it's been the same number for 2 years. But I did take the report straight over to my Onc and he looked at it and said "you look great - those are your numbers and you are in excellent health! It runs a little low on you because you do such intense exercises." I think I've also read that Taxotere has a side effect in some people of a low wbc. Then I called the PCP back to update him and he said "Oh I didn't think there was anything wrong, just wanted you to update him." ((sigh)) LOL
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Hi All,
Just checking in. I'm day 6 post op. I had a LX and ALND and also had 30-year old sub pec implants removed. I could have had the implants replaced, but decided against it. I have three drains now and a torture compression garment around my chest. I'm not sure which is worse, the drains or the compression garment. I think I'll either be a AA cup or an A cup once everything healed. Oh well....
I might get my path results today. I'm a little scared about that. I know the neoadjuvant chemo did a lot of good, I just don't know if it did "pCR good".
I'm feeling a little like the bride of Frankenstein today....no hair and moving very stiffly. All of this is temporary, I'm just ready to get these drains out and the torture garment off!
On the good news side, hubby and I went to our weekly ball room dance class yesterday. It was nice to get out and have some fun even though I was moving very gingerly....and not like Ginger Rogers when I say I was moving gingerly!
Stupidboob, I hope your knots turn out to be nothing.
Hugs,
Kay
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Yes, Peggy I am considering a different surgeon, if this guy cancels again (would be third time) I am done with this guy. I was suppose to have this done back in October.
Interesting stuff on this thread....so cool, glad to be back on...
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