Freaking Out!!!!!
Comments
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Hi,
I was diagnosed in July of 2005 and was also Triple Negative. I was stage IIa, no node involvement. I had 4 rounds of ac/ 4 rounds xeloda and taxotere and 33 radiation treatments. I've been cancer-free ever since. (I had a lumpectomy on my left breast)
Just 3 weeks ago, I underwent a bilateral skin sparing mastectomy with immediate reconstruction with tissue expanders after finding out that I am positive for the BRCA2 mutation. I had an oophorectomy also. I feel blessed to have found this out because I felt like at least I had some power. If I hadn't found out, I had a really good chance of getting breast cancer in the other breast. Take care and I'll keep you in my thoughts and prayers!!
Keep positive thoughts and it's true that not just the "triple negative" part is the only thing they consider when giving you a prognosis. They take into consider the size, the lymph node involvement, etc....
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Melissa,
I'm 42 with two boys-8 and 6. Tonight, I had an intense Nerf gun war with the 8 year old and his sleepover buddy. Life is awesome!!!!! I was just turning 40 at diagnosis, and I saw that you are only 37. If I had to deal with this at 37, I am sure I would have been out of my mind, so I think you are doing great. You can do this!
Many Hugs
Bobbie
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Hi
I'm Nets from Scotland.
I was diagnosed with invasive ductial catcinome, poorly differentiate, high grade, PR-, ER -, have a 4mm tumour attached to the skin, and after sentinal node biospy 2 of 5 nodes were involved. No definitive reults on HER2 as yet.
Started chemo week after biospy surgery, and am concerned.
Any advice??
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Hello Melissa,
I was diagnosed June 23rd 2002, 10 days after the birth of my daughter. I am a 6 1/2 year survivor. My tumor was 1.7 and I had one positive node. To this day I don't know what stage I was/am/was? I was toooo scared. I didn't even know what a Tri Neg was till years later so I understand your fears Melissa. My Dr. knew I was so scared and that I didn' want to know any more than I needed to know. I use to sit in the office when waiting for test results with my head between my legs in crash position
! lol There are some real scary stories but many positive ones as well. Hang on to the positive. You may need to look away for awhile when a strand seems too intense. I def. would not have been able to read through the posts on this site when i was 1st dx. You can PM me if you want. In time your fear will fade! I remember the fear I felt my first year. Stay strong and keep your head up! I promise it gets better! I am almost to 7
(((((((((xoxoxoxoxoxoxoxoxoxoxooxTRI NEGSxoxoxoxoxoxoxoxoxoxo)))))))))
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Hi Melissa,
I don't post very often but reading your post has hit a chord with me. Please know you are not alone. I am just a few months ahead of you in treatment and believe me (us) when we say it does get better. I finished chemo in January (Dose dense ACT - AC was tough but T was a breeze) and had a bilateral mastectomy three weeks ago. I just have radiation to go. Like you I freaked out over the Triple Negative thing and mine was stage III with node involvement. However, I got really good news from the pathologist after surgery - pathological complete response (pCR) whooo hooo!!!. That gave me something to hang onto and move forward with. Yours is stage I so hang on to that and believe in the treatment you are getting.
I am a teacher also and had to give up my job this year. I was in between jobs and got my dx in the summer one week after I got a new job offer at a great school. I wanted to try but reality was that a brand new teaching position and chemo starting the same week was not going to happen... I was so scared and depressed and had many of the same feelings you are having about "where did my life go?" and "why is this happening to me." All I can say is hang in there! I am only a few months ahead of you and I feel 110% better than when I started this whole mess. I have even started looking for a new job - I miss the little buggers! Just take one day at a time and you will get through it.
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Walstib123
Why do you have radiation if you had bi-mast.? Is it becuse you had big tumor? I am meeting my radio onc next week to see if I need rads since I am still not sure on this. I had 1 cm tumor and 1 micro mets in one sentinal node. What do you think? Did you have any positive nodes and family history??
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Hi ladies. I'm freaking out now too. I'm triple neg., stage IIIA ILC and just had bi-lat mastectomy. The doc just called with my report and the neoadjuvant chemo didn't work as well as they thought. I've got 27 out of 29 positive nodes and they found quite a bit of tumor in the breast. I'm beside myself with grief and fear. The lymph node status has me really scared. I just want to live.
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Bevsteed
Did 27 positive nodes from final path report? I read you had MRI, US, Mammo all showing gone and don't know why path reports shows sth......? that's strange, having MRI, US, Mammo all being wrong.
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Newalex: I thought it was strange too. I even saw the mri pics as compared to the ones I had before treatment and they were clear. I was really in shock. Yes, this is from the final path report. I've met a couple of other ladies here who had the same thing happent to them. ILC is tricky and sneaky. That's the only reason I can come up with why all the tests were wrong.
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Can anyone tell me if headaches are common w/Taxotere (& hot flashes symptoms)? I've been experiencing them on and off since TX. (My last TX was 2/20). As a result I've been spazzing...
Hope you're feeling better Melissa. I just finished my 8th round and did well. Taxotere was worse than A/C for me.
Jeannine
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Hi Melissa
Interesting thread, helps me work out a few things, I am actually the luckiest woman in the world , well I feel that way. My DCIS was multifocal so I needed a right mast , I choose bilat , not the wait and see kind of girl. I found out after surgery that I had micorinvasion with clear nodes, my BS told me I would be fine and really didn't need to see an oncologist. I made an appointment with an oncologist on my own just curious and he explained to me the seriousness of being triple neg. He told me that if the invasion were 1 cm I would have needed chemo. I really had no idea how lucky I was until I met with this oncologist. What I did learn is that size does matter ! the sooner it is found the better your future will be, and your nodes are negative !! That is the gate way into the rest of your body, did you have a mastectomy or do you still have breast tissue ? I hope you are a bit more relaxed these days and that the chemo is more managable. You will be back into your routine again I promise, this is a blip, it is so unsettling to be taken from your daily routine, the things that are so familiar. I am sending you peace and strength and big hugs.
Anna
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Anna62
How big was your microinvasion exactly? Was it close to 1 cm? Did you have rads ?
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Hey TNS!
Almost 8 year survivor here Checking in!
Hang in there - you will get through this!
I agree, the earlier you find it the better- but also the Earlier you TREAT It the better- remember, TN responds better to chemo.
SO no matter what your stage is, hit it hard, early - and you have a really good chance of knocking the cells to oblivion.
Alex, how are you doing?
Yes, Taxotere can cause headaches!
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Thanks Ladies,
I just had my second round of chemo (AC) yesterday. I got an awesome massage today and that always makes me feel better. I was able to go for a long walk today and managed to eat. My first chemo I was only takung meds after symptoms hit, but this time I am being more proactive and it seems to be making a difference.
Anna, to answer your question, I had a lumpectomy because I wanted the tumor out ASAP,and was able to schedule one within 10 days of dx w/a top surgeon in town...I started chemo within 4 weeks after that. I will get the results from my BRC A test on Monday, and if positive will opt for a dble masectomy/ovary removal....the fun never ends! Thanks for all if your support!
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Melissa,
I was dx in Jan. and after the initial shock, crying, depression, etc... I gave it over to God. I read the posts, follow-up on information regarding TNBC and try to keep my husband informed. I've accepted what's going on and I'm doing what the doctor's tell me to do. We should all live life to the fullest anyway and now more than ever you need to express your feelings, wishes and desires. Hug more, laugh more, tell those who mean so much to you how much they mean to you, realize that there are some things we just can't control, but control what we can and never ever take anyone or anything for granted.
I have been encouraged everytime I come on this board and read the stories, especially the funny ones. You will get thru this and you won't be alone.
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newalex
My microinvasion was < 1 cm hence no need for rads or chemo, according to my oncologist if the microinvasion had measured 1 cm he would have recommended chemo. I had bilateral mastectomies so there was no breast tissue left to radiate. I had chosen to have my right breast removed because I never wanted to go through this again, the biopsy was horried took four hours to do, the clusters of calcification were so close to my chest wall. I guess my question is are most woman hanging on to every last bit of breast they can and is that why we are having recurrances ? My understanding speaking with all my docs including my husband who is a Dr. is that if the breast tissue is gone and the nodes are clear recurrance is minimal.
Melissa one half centimeter of tumor cells seperate us, but for the grace of god go I. You have been on my mind these past few days, I am so glad to hear things went well , a massage is so good for the soul. I had a neg BRCA and I pray to the powers that move the heavens yours is neg too. I tell you I have the strangest guilt, I read the posts from all the angels recieving chemo and I feel so guiltly that I do not have to. My email is posted if you would like someone to write to while you recieve tx. please feel free to send me a message. God Bless, and I am sending hugs and warm thoughts.
Anna
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No, Anna, we are not having recurrences because most women are hanging on to every last bit of breast they can. I am sure you did not intend to be insensitive, but wow, what a slap in the face to those who have thrown everything they could at this yet still had it return. We are having these recurrences because this disease is a sneaky b%ich... we are having these recurrences because we still have no idea what causes it in the first place... we are having these recurrences because we do not yet know how to stop it. Please do not suggest that it's our own fault. Wow.
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Another one....eh VickiG,,,,
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Anna-
Tell your husband I was stage 0 (8 mm dcis 0 nodes) like you and was advised to have a bilaterial masect. with no chem. 10 months later I was stage 4. It's really not about holding on to breast tissue. These can't removed all the breast tissue from any woman; it's impossible. Recurrences can happen to any of us. All we can do is take every measure available to us to fight. God is able, stephanie
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Lexislove.... I know, it's like dejavu all over again lol! I have been sitting on my hands a lot lately, believe me!
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Anna, you raise a question that is sensitive, that being, which treatment options does one select. I know that you did not intentionally mean to make implications.
I'd like to suggest that before we continue with this particular discussion, and more hurtful comments are exchanged, that those who are interested in this, please read this section on our site:
Thanks Everyone for moving forward in a constructive, caring manner.
Best,
Melissa
http://www.breastcancer.org/treatment/surgery/mast_vs_lump.jsp
Under certain circumstances, people with breast cancer have the opportunity to choose between total removal of a breast (mastectomy) and breast-conserving surgery (lumpectomy) followed by radiation.Lumpectomy followed by radiation is likely to be equally as effective as mastectomy for people with only one site of cancer in the breast and a tumor under 4 centimeters. Clear margins are also a requirement (no cancer cells in the tissue surrounding the tumor).Deciding factorsAlthough most women who have a choice prefer the less invasive lumpectomy, deciding between lumpectomy and mastectomy depends on a how you feel about the following:Do you want to keep your breast? If it’s important to you to keep your breast, you may decide to have lumpectomy with radiation instead of mastectomy.Do you want your breasts to match as much as possible in size?For most women, lumpectomy has a good cosmetic result. In rare cases when a larger area of tissue needs to be removed, lumpectomy can cause the breast to look smaller or distorted. There are reconstruction options available for both lumpectomy (if there is significant distortion) and mastectomy. If you need to have a large area of tissue removed and two breasts of matching size are very important to you, you and your doctor will need to decide which surgery is best for your situation.How anxious will you be about breast cancer coming back? If removing the entire breast would help you worry less about the possibility of the breast cancer coming back (recurrence), you might consider mastectomy.There are also other, less personal factors that can affect which type of surgery you have:Where you live: Research has shown that women who live in the United States are more likely to have mastectomies than women in other countries. In the Midwestern and southern parts of the U.S., mastectomies are very common. We don't know why this is, but it probably has something to do with the attitudes of women and their doctors.Where you go for treatment: Lumpectomies are more commonly performed in university-based hospitals than in community hospitals.When the surgeon was trained: Older surgeons in some parts of the United States may be more old-fashioned and less likely to offer lumpectomy with radiation as an option for their patients, particularly their older patients. Until the mid-1980s, mastectomy was the standard of care for any stage of breast cancer, and research has shown that surgeons trained before 1981 recommend mastectomy more often than lumpectomy. If you feel strongly about one option over the other, ask your surgeon how many mastectomies and lumpectomies he or she performs and why. Seek a second opinion to get a more complete and balanced understanding of your options. Don't let hidden biases or unchanging attitudes keep you from getting the best care.Lumpectomy: Advantages and disadvantagesThe main advantage of lumpectomy is that it can preserve much of the appearance and sensation of your breast. It is a less invasive surgery, so your recovery time is shorter and easier than with mastectomy.Lumpectomy has a few potential disadvantages:You are likely to have 5 to 7 weeks of radiation therapy, 5 days per week, after lumpectomy surgery to make sure the cancer is gone.There is a somewhat higher risk of developing a local recurrence of the cancer after lumpectomy than after mastectomy. However, local recurrence can be treated successfully with mastectomy.The breast cannot safely tolerate additional radiation if there is a recurrence in the same breast after lumpectomy. This is true for either a recurrence of the same cancer, or for a new cancer. If you have a second cancer in the same breast, your doctor will usually recommend that you have a mastectomy.Mastectomy: Advantages and disadvantagesFor some women, removing the entire breast provides greater peace of mind ("just get the whole thing out of there!"). Radiation therapy may still be needed, depending on the results of the pathology.Mastectomy has some possible disadvantages:Mastectomy takes longer and is more extensive than lumpectomy, with more post-surgery side effects and a longer recuperation time.Mastectomy means a permanent loss of your breast.You are likely to have additional surgeries to reconstruct your breast after mastectomy.Making your own decisionYour breasts may be such an important part of your identity — your sense of who you are — that you'll go to great lengths to preserve them. That's a completely acceptable approach to take, no matter what your age or figure — AS LONG AS it doesn't endanger your overall health and chances for a full recovery.
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Melissa ~ not sure where to ask this, but can somebody please let me know why my reply was removed? It's great that you provided the info you did about the difference between different tx choices ~ that's a very useful summary! It doesn't actually answer the question that was asked, though: if we are having recurrences because most women are hanging onto every last bit of breast they can. I can only assume my post was pulled because it was insensitve; perhaps that is true. It is infinitely more insensitive to leave the question hanging out there, unanswered. No, that is NOT why we are having recurrences.
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Melissa,
I don't come here very often, but I saw your post and had to let you know you're not alone! Our diagnoses are similar, and I'm 39 with 3 kids (14, 7, and 5). I had a bilateral mastectomy Dec 30, and did 4 cycles of AC. I start 4 cycles of Taxol tomorrow, and I'm terrified too!
Thanks for sharing, and best of luck with your treatment!!!
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Melissa,
I'm older for a triple neg. Was diagnosed at age 60, and my docs all were surprised. I just wanted to tell you that now I am just about to turn 64, and I am doing well. Had 4ac txs, followed by twelve weekly taxols. My onc gave me 2 extra strength Tylenols before each taxol as taxanes can cause headaches.
Hang in there, you can do it!
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Technically I'm a triple negative "success" story, so far. I was diagnosed just over 9 years ago with a 2.1 cm, extremely aggressive tumor. I was 41 at the time. I chose lumpectomy with radiation and had 4 cycles of chemo (AC). So far there is no sign of that cancer. Knock on wood.
I've just been diagnosed with a second primary though, same breast. ER and PR positive this time, low grade and smaller. Lumpectomy was still the proper choice for me at the time 9 years ago. But this time I will have to have a mastectomy as I can't do radiation again. My reconstruction options which I'm not planning to pursue at the moment are somewhat limited due to the previous radiation. But again, I still made a well informed decision and have no regrets. It's a very personal decision that each woman has to come to terms with and decide what she can "tolerate" both physically and mentally.
I did chose to pursue genetic testing this time and will consider a bilateral if the results indicate that's an issue. I have limited family history.
Good thoughts to all of you who are working through these decisions. I got through it the first time and I fully expect to get through it again.
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Marmsie
Good to hear your 9 yr TN sucess story,,,,,what kind of family history did you have? Did you get gene test result yet? Hope the TN long time suvivors come to this board more often as this gives so much encouragment to us th newbies....
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Evening ladies
After 2 weeks of waiting post lumpectomy - today I was told that I am TN with zero nodes active, also the "mass" was contained and not "in-situ", surrounding breast tissue all clear. The surgeon said this was a good result - but reading here I am confused. I was guessing possibly radiation - but most of you seem to have chemo. I am waiting to hear from Cross Cancer hospital for apt and to meet with an oncologist - I am now very worried about the next step forward. I too am looking forward to reading more positive and encouraging stories from TN. I know that I will be here for awhile and pray that I will be adding to the stories.
Regards Deb
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Melissa - I've been thinking about your original question/desire for success stories. I know when I read on bc sites - even here - that the scary bad-news stories seem to dominant. But then it occurred to me that most women diagnosed with bc go through their treatment, do well, recover, and then go on with their lives. Most never found this site to begin with - and if they did, most of those won't be posting regularly after their treatment is done. So I think by definition the ratio of women dealing with recurrences, mets, etc after an initial dx is going to be higher here than in "the world," if that makes sense. Not putting down this site!!!! Just saying that most of us who are here are currently dealing with cancer, one way or the other. Not everyone, but most. And most who've completed treatment and moved on are not here (again, not everyone! But most.)
Hope that helps a little. Btw, I am also the mom to a young (2 and a half year old) son. I very much plan to be here for a LOOOOOONG time yet!!
Linda
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Hi Ladies,
It's been a while since my last post. I finished w/ chemo one month ago, had my port removed about a week ago, which was so satisfying, and will start w/ rads on Monday. It's been quite the journey, but I am feeling better. I don't go back to my onc until Sept. for blood work and she does not routinly suggest scans unless there is a problem w/ the blood work.Part of me is relieved that she has this laid back approach, but then another part of me would like every scan possible to rule out any evidence of disease. What have your post treatment plans been?
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Melissa Welcome back!... I am not tri neg but my post treatment is the same...Just periodic bloodwork and scans as needed..I rather like that approach myself......
Have a safe and Happy 4th of July!.......
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