Calling all TNs
Comments
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lovelyface- boy, do I hear you. I've been there before and, if what MBJ had is contagious, I had my worst meltdown since diagnosis today (well, last night actually, in the middle of it). Who'd a thunk it?
I am 56 and feel like my life is over (for more reasons than cancer). Thanks for all of your concern in advance, but this is something I am going to have to work out by myself.
I know this post will surprise many, coming from the self-appointed humorist on this thread. Just another example of life's ups and downs, I guess.
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Heidi I really relate to you, I liked you from the first time I read your posts. Actually I think we are alot alike. Our diagnosis is almost identical, and your sense of humour is really infectious. If there is anything I can do for you, you just have to say the word. But sometimes you just have to ride it out. Spring isn't far off and with it comes better days.
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Heidi:
We are all right here for you, any time, in any way. Just remember, no matter how dark it may seem and feel - the light is shining on the other side - you will be in it again. Stay strong, dear sister, you have already gone through the worst of things and have come out to the other side. You can do this, just have faith in yourself Heidi. There is strength in numbers and you have many in your army.
love,
Linda
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Heidi, you make us laugh all the time, but yes, we all have these sad feelings inside of us, how can we not? We are being faced with our own mortality. When they say to you "be positive, it is your attitude that counts", I feel like screaming. So let it all out, girl, scream, cry as loud as you can, and then you will stop, because after that, life goes on. Hugs and Love!
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Wow, what is going on?! Heidi and MBJ are usually two of the most upbeat posters. I hope things get better for you both very soon!
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Lovelyface... I am new to this thread and can't read ALL of the posts... but I have read enough to know that you are concerned about your pathology report... and wondered what you have decided to do?? I am in the same boat... I am at the beginning of chemo and expected to have rads this summer, but my path report shows SOO much stuff, enhancements, hyperplasia, metaplasia, microcalcifications, pappillomas etc. and my onc says it probably gives me a 30% chance of recurrance even with chemo and rads, but doesn't advise BMX, at least in his opinion... he said that if I were a smoker and had a 50% risk of lung cancer I wouldn't cut out a lung... very true... but he agreed that lungs are necessary and boobs aren't.
So... First, I am having genetic testing... if its positive, my mind is made up... Second, if its negative, I will insist on a followup MRI in May before rads, which was recommended on my path report anyway.
Just curious where you are with all this.
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Sometimes life in general can get to the best of us, and that's without the added stress of this dx. Each of us have our highs and lows, no matter how strong we appear, we all have those times. We have had a lot of sad times on here very recently, and I think perhaps that may be the underlying cause of some of the down's our posters are having. We become attached to the people here, and people in our communities with this dx, and when something happens to them it brings home our own worst fears as well as making us extremely lost without them. That's why sometimes it may be good to take a break from the forum if that's what you feel may be happening to you. Some of our posters may feel a sense of responsibility to be here, but I for one truly hope that if someone feels they need to take a break, they know there will be others who will be here until they return. We miss those who aren't posting, but it's good to take a vacation at times. Those who are down right now... you're in my thoughts. Spring IS coming... the trees will bud... the flowers will poke their heads up... and the ice cream trucks will begin making their rounds again. For some who are on the west coast, it often feels like spring already, so I hope you're going out and enjoying it! Hang in there guys...
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cc4npg - I totally agree with all you said.
bdavis - You and I seem to be in the same boat. Yes, I am worried about my pathology report. But I have to remind myself that I have 3 cm clear margins after the lumpectomy in the left. I am done with Chemo and am supposed to start rads as soon as I get the results of my genetic test for which I just did the blood test yesterday. My Oncologist, who is supposedly very brilliant has suggested not having a bilat. mx or any mx. I am triple negative though, which I believe has a higher chance of distant recurrence. I am not 100% sure whether this means that the cancer could start again in the breast, or can start in a distant place, without first occuring in the breast which then makes sense not cutting them off, since it can start anywhere anyway.
My dx was in July, 2010, when I had my first MRI, after the surgery. Within 6 mos, I just had my second MRI, the results show some enhancements in both, but the radiologist thinks it is just post-surgical (benign). Now I have to go through the nightmare of having a diagnostic mammo and ultrasound. They keep reminding me that catching it early means a cure and that's what I hope I could continue to do, although I am not sure I can handle the emotions, high and low, freaking out.
I can't imagine having a mx, I am not prepared for that right now, maybe later. I just freeze at the thought. My problem is that my left with the cancer is not my worry. Enough chunk was taken out with clear margins, but the right one without the cancer, has all that hyperplasia stuff. The path report, after a biopsy of the right indicated that I had residual columnar cell hyperplasia with atypical ductal hyperplasia extending to the surgical margin. My Oncologist thinks that this is all over the breast (not necessarily in my case, but in general), but my Surgeon has agreed to do a minor surgery and try to clear the margin. I am happy about this, so when rads is over, I will have her do it. If the margin comes out clear in the Right one, I will probably feel safer although I will never be totally at peace, knowing that it could be all over, just as the Onc. said.
My prognosis and thoughts will completely change if my genetic test comes out positive. Then I guess it will have to be a 100% bilat mx.
bdavis - Since you are ER and PR+, you are going to be given anti-hormone therapy after a lumpectomy. Would that make you feel safer? Since I am TN, I am not that safe, although my Onc. wants to put me on Aridimex anyway, since I am 5% PR+.
This last path report also advises on another MRI in 6 months. I guess I am really lucky for my radiologists who give me MRI's every 6 months. I hope there aren't many negative SE from MRI's. Is it possible for you to remove some of those findings via more surgery?
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I could have more surgery, but my understanding from 12 years ago when they removed the ADH, they were actually removing a lump (fibroid) that was surrounded by tissue with ADH and clear margins were not even mentioned in the path report... so I am sure some was left behind... The MRI report said that I should have the papilloma removed, but BS doesn't agree, says its benign. But there's also something going on on the right, in my good breast where they say 6 month MRI follow up needed. So I too am lucky its all covered.
ADH should be removed, so what to do when its all over the breast... I think mine is too, and that's prob how I ended up with cancer.
I am very inclined to have the PBMX and skip rads and tamox... I have great breasts, but I can always have great freasts too... that will also hold up to aging ...
Bottom line is, I would be super irked if it comes back and has progressed to distant places... no boob is worth that.
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beccad - I had surgery (twice) and then chemo. They didn't know for sure if I had cancer again, so they removed the little lumps and the tissue around it (which was part of my scar capsule from my reconstructive surgery). I didn't have clean margins, so they removed more tissue and 10 lymph nodes, which all came back clean. About 6 weeks later I started chemo (because I got 3 opinons, a PETscan and brain MRI.
MBJ - YIPEEE!!! I'm so glad you popped back in! I've been having a rough spot, too. PM me anytime!
Kelben - I hope they can figure out WTH you have and get it OUT of you!!! Cancer, the gift that keeps on giving.. ugh!
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I looked up "hyperplasia" which means layers which is probably why they say it is all over. Absolutely no breasts are worth it, if it comes back and has progressed. I am just so confused, as my Onc. says your life does not depend on removing them. What the hell does this mean? And the Onc. nurse says, take the seeds out altogether, why keep the seeds? Contradicting each other. The Surgeon seems to be very mx happy, many seem to have noticed that about her. Having ADH is dangerous, some literature says that it doesn't necessarily become cancer. I want to talk to someone, but not sure who would best answer me, surgeon, onc. or who. My question is on an MRI, when they see enhancement, and take care of it by biopsy or lumpectomy - then are we safe? Are enhancements the only thing in an MRI which shows something? I was told that lumpectomy plus radiation = mastectomy, same thing, which of course does not answer our problem of hyperplasia. I honestly am so confused, pray each day that someone would make my decision for me. I am seeing this lady who recently had a mx. I trust her judgment and would love to hear what she says. I would be using the same surgeon and PS as her if I was to do it. If her experience is great, I might go for bilat. mx........I have never ruled out that option. Just right now, I can't deal with the thought. I have always had such a hard time making decisions and this one is the most difficult ever.
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bdavis - have you considered getting an opinion from another breast surgeon? I am the queen of 2nd opinions. You need to do what YOU feel is right!!!
So, I went to my obgyn today. My ovarian cyst has gotten a little bit bigger. It's 5 cm now. She said it's a simple cyst. I told her I was TIRED of all the doctor visits and medical crap. So I want to wait a couple months. Plus DH has used up all his vacation until March.
So get this... my blood pressure was 87 over 56! WTH??? I didn't eat much or drink a lot of water. Last time it dipped down, I fainted!!!!
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lovelyface - when I met my plastic surgeon, I knew I wanted a BMX, even before finding out I was BRCA1+. I had a breast augmentation a few years previously, so I figured I'd already had some kind of breast surgery. The surgery wasn't fun, but it was doable! I really love my PS and felt he did a great job.
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Hi Lovelyface,
I have been agonizing over bilateral mastectomy since day 1 (Oct. 12, 2010). I feel as though I was railroaded into lumpectomy plus rads = mastectomy. I had the left breast lumpectomy on October 20, 2010 and I will have my 4th and final TC infusion on February 4th. This was supposed to be followed with the 33 days of radiation, but today, I finally felt I had enough data to demand an in-depth discussion with my onc over why I shouldn't have bmx. It took over 90 minutes, and I won't recount everything here, but I've concluded 'they' misstate and discount important information that those of us who are not so in love with our breasts we'd die to keep them really need to make informed decisions for life. The most concise statement, from one of the most profound sources (Johns Hopkins) is below. Please note their use of the words 'DRASTICALLY REDUCES'. She said the lump+rads=mx only applies to a breast in which there is already cancer. It says nothing about the all-encompassing future and risks. I for one, as a queen-wimp, cannot face a future of biopsies at every little finding of calcification, or unknown/suspicious imaging ghosts. (IMO the biopsy I did have prior to diagnosis was savage. I felt everything.) The onc said bmx was not 'medically necessary' but that she'd support it. I find it difficult to believe that the insurer wouldn't prefer it, just given the quips I've included below. I believe for many reasons some BC patients have been sold the proverbially bill. So, I'm going for a second opinion on February 9th (for everything - pathology, surgery, oncology for post-TC treatment), but I'm 90% certain I'll have bmx and skip rads and perhaps have a shot at a healthy recurrence-free future. Google some of the text from these sources for the full story:
(1) from WOMENSHEALTH.GOV:
You can undergo precautionary surgery to decrease the chances of a recurrence. Undergoing bilateral mastectomy can reduce the chances of breast cancer recurrence by as much as 90%.
(2) from HOPKINSMEDICINE.ORG: 10 Myths About Breast Cancer Survivorship
MYTH: If I've had a mastectomy, I cannot have a breast cancer recurrence.
FACT: Undergoing a bilateral mastectomy drastically reduces your chances of breast cancer recurrence since almost all of your breast tissue has been removed. There is a very small chance that residual breast tissue or cancer cells could recur on the chest wall. That is why it is important to continue with self-breast exams; see your doctor on a regular basis for examinations; and report any breast changes to your doctor.
If you have undergone a lateral (one-sided) mastectomy, you are still at risk for developing breast cancer on the other side. A yearly mammogram of the remaining breast is important to detect any potential breast changes. In general, no form of breast imaging will be recommended after a bilateral mastectomy-with or without reconstruction.
Note: Having a mastectomy or bilateral mastectomy does not reduce your risk of developing a cancer recurrence elsewhere in your body
Chrissy
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I feel like Lovelyface and CHrissy are struggling with my exact dilemma... It is true that stats say that lump+rads=mact, but its also true that they have NO effect on hyperplasia or any other benign condition... Most of my hyperplasia is florid, non-atypia, so my docs are saying not a big deal, but I have had and probably still do have the atypical variety, and that's the problematic type, that increases ones odds 4-5x.
I agree that the idea of mammo's (that are worthless to me) and MRIs, and ultrasounds consuming my future, does not appeal to me... My onc says that with reducing estrogen (via Tamoxifen and oofrectomy (sp)) will resolve the hyperplasia issue... But as it stands today, I have a 30% chance of getting cancer again, and that is not a recurrance per se, I guess I have a percentage of recurrance and a percentage of a new cancer due to my annoying breasts.
And so, if I have a PBMX, I don't have radiation, but do I also then not need tamoxifen??
Oh and KittyCat , I have thought about a second BS opinion and even have a name...
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bdavis - hi, my first baseline mammogram found a small cluster of microcalcifications so I had to have a biopsy. The biopsy found only atypical ductal hyperplasia (ADH) but my surgeon wanted to remove the tissue in case there was any DCIS lurking by. He explained if only ADH was found after partial mastectomy then I was done; if any DCIS was discovered, I would need rads. He referred to DCIS as "pre cancer" and described the surgery as "non cancer" surgery because my biopsy results were benign. Anyway, when the path report came back, there was ADH, DCIS and an invasive (high grade) triple negative tumour. I'm glad my surgeon acted on the finding of ADH in my initial biopsy. I'm also very fortunate that my GP likes a baseline mammogram for her patients when they turn 45 because the breast screening program is not available until 50 here where I live in Ontario, Canada.
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Sugar.. My first mammo was at age 35 when I had a lump and also ADH... its from then that I assume some ADH was left behind because they were only going after the lump and stumbled on the ADH... All my other biopsies or lumectomies since then have only shown non-atypia hyperplasia, but they were not from the same location as the original... But since I have now had IDC, and remain to have other benign conditions, I am concerned the non-cancerous stuff will morph into cancer... I feel the lumpectomy, chemo and scheduled rads would indeed resolve my cancer recurrance from my IDC... but it does nothing for my other findings.
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bdavis and Sugar77 - I pained over this situation for months, driving my doctor's crazy. No one helped. Tried to find articles on both sides, which is once you take them out, your options, implants, reconstruction problems etc. The grass is not always greener on the other side. I read about women who have problems for years with their implants, and finally remove them after an average of 4 years. Some feel heavy with them in there. I have also head of women who have removed them (mx) but yet had a recurrence in their chest wall.
There is an aricle here on breastcancer.org which talks about how doctors are relating a new kind of cancer on patients who have implants, although a very small percentage. I just don't like the idea of a foreign thing in my body. I am still in the process, have an appointment to see a surgeon to use my own body material to make breasts. For me living without any breasts at all and wearing prothesis everyday is not an option because I want some quality to my life after this. I think once you learn everything there is to learn (which is very difficult as Sugar mentions, there could be DCIS lurking inside the ADH), then you can really feel whether you can live like this with ongoing MRI's and biopsies, or can you live with "freasts". By the way I am totally depending on my MRI to show me cancerous enhancements every 6 months, as I do not believe in Mammo's. I think they are completely useless, except for the fact that doctors correlate the findings between the Mammo, ultrasound and MRI.
bdavis - in answer to your question regarding if you have a PBMX and don't have radiation, would you still need tamox. In my opinion yes, you would because tamox. reduces the extra estrogen in your body for at least 5 years. These extra estrogen can make new cancers or recur the old ones.I agree with your doc on this one. Atypical cells plus extra hormones = cancer.
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I was diagnosed with bilateral triple-neg. BC in 2008 at 32 years old. Since my mom is two-time survivor and her mother had BC also (still lived to age 93 though) I did the gen test and tested positive for BRCA1. The moment I was diagnosed I was sure about having a double mastectomy without reconstruction. I had 4AC and 4 T neo-adjuvant with a cPR after I was done, so my Onc. was surprised that I still wanted to go ahead with the Mastectomy. But because I had a cancer already in each breast, and also because my mom had contralateral breastcancer 10 years after her first trip.neg. cancer I just could not leave the "girls" in place. I did not want to have repeat Mammos etc. constantly. My husbands full support was a great decision helper. Now 2 years after my surgery I can say that I have not regretted it once. Sure, in the summer I sometimes miss being able to show some cleavage :-), but 99 out of 100 days I am very comfortable with my new "flat me". I normally only wear my prosthesis in my bathing suit and go "au natural" on all the other days. After years of partially defining myself through my big breast, I have now found a new self-confidence and view on my womanhood that does not depend on a cup-size or breast at all..... Just some food for thought and a slightly different perspective for those of you how are still unsure about pro/contra mastectomy.
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Thank you Teka. I just felt there had to be a "different perspective", you know. I am only 35 now, breastless, but I am still a woman, still beautiful, still happy. I have scars, my body is not perfect anymore, but so what. My husband still loves me, my kids don't mind the new me (my DS 5 wanted to know though, if my breast will grow again :-) and I have accepted myself and my battle scars, as my DH calls them. The feeling in my chest skin is almost back to normal and the radiation burns healed. My Onc/Surgeon said that I could come back to see him anytime if I was ready to get reconstruction, but honestly...after 4 surgeries (port in, mastectomy, port out, oopharectomy) I have nicer things to do with my life than go under for an elective procedure with all the risks attached to it. Right now I am trying to lose the last of my chemo/ooph weight to tighten the buttocks and the tummy and give myself a more athletic look. And as the tummy shrinks I can even see a nice curvy waistline again....all without the "girls on tops"
And another interesting think I learned: Most people don't look at your boobs. I moved to a different country after my cancer treatment, and most of my new friends were shocked to find out I had no breast, even though I was sure that everyone must know, because I often wear quite tight tunic tops etc. without prosthesis....but apparently no one really cares 
They all just looked at my face, I guess 
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Hey all.
I got good news yesterday about my BRCA tests, they were negative. My DH & I went out for lunch to celebrate - mostly because we have two little girls and this is good news for them.
Then I got home, feeling good, and got a call from my onc. Seems the MRI showed an "incidental" mass in the area of my pituitary gland. A tumor. she says she's 99% sure its not breast cancer. But this isn't good.
I see a neurologist Tuesday and the onc right after, the same day. I am trying to maintain composure around my kids but inside I'm a mess. Numb. Hopeless. F*ck.
Could be brain mets. Could be another cancer. Could be another kind of tumor. Benign, I hope. I don't know what's gonna happen. I had psyched myself up for chemo and rads and fighting. Now I think I can't fight this, I feel like my expiration date has come due.
Sorry for being such a downer but I'm terrified more than ever and know this is rare, so probably no one on here has any info, but just in case. I'll take any info or advice anyone has.
Thanks.
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I remember when I was called to come in after something suspious on my MRI... total mess and then had an opportunity to talk directly with radiologist, who I love by the way... She said that the suspicious stuff on a healthy person would have been brushed off... but because it was MY MRI, a breast cancer patient, they want to investigate more.. She really put me at a better place, and in the end, it was benign... so I guess we want them to investigate, we want them to ask questions... and it sometimes turns out bad, but more than likely, you will be fine... Don't put the cart before the horse.
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Michelle67- I am so sorry about your bad news.............Big hugs..............
Isabelle XX
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figured I'd share my mastectomy decisions, if it helps anyone...
I originally had a lumpectomy and then did the standard chemo, 4 AC, 12 weekly taxol. A week after I started rads I went back to the BS for a follow up mammo and they found 2 calcifications, highly suspicious, in the bad breast. I was stunned and horrified - after all that I'd been through, how could this be? They did a biopsy and it was DCIS.
The biopsy was so emotionally wrenching, indeed, the whole experience so horrifying, that I wanted both breasts gone. Immediately. There was no way I could see myself going through mammos and biopsies every 6 months without being a mental wreck. But that's me. I don't seem to handle severe stress very well and have always been prone to worry and anxiety.
I had a BMX with reconstruction. The reconstruction has been very painful, I cannot lie, and one and a half years out I still have a lot of pain. But - I never regret the mastectomy decision. I don't miss my old breasts at all - they were trying to kill me. I just wish there were better reconstruction options out there. I still worry about tests and recurrance, but at least I don't have to deal with twice a year mammos and the worry they cause me.
Michele - they found a node on my thyroid recently. I guess this is very common in women my age. But because of the cancer, they had me get a biopsy... luckily it was nothing. I know how worrisome it is, but once you have cancer I think that they want to check out every little thing.
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Michelle - I'm so sorry to hear you have more on your plate, but please don't give up hope! This could very well be benign. That is easier said than done, I know, so I'm sending you as many positive, healing vibes as I can.
My position on BMX - I tend to follow my gut, and my first instinct (after MUST start chemo NOW) was to remove both breasts. I have never really felt "attached" to them or seen them as integral to my identity as a woman or sexually. For my husband's sake, I am going to have delayed reconstruction, but will only do a DIEP - no implants. This means I will likely be a large A, small B at the most (size C/D now). Knowing I am TN only solidified my decision. However, it is a very personal choice, and I believe that just because it works for me, it doesn't suit everyone.0 -
Michelle: I'm so happy about you being negative for BRCA! Congrats! That is so relieving for you to know your daughters are ok. Very sorry to hear about the incidental finding, but try to keep a couple thngs in mind. First, MRI's show up all kinds of things and some of those things are nothing at all. Second, 80% of tumors are benign. The odds are in your favor.
Short story... Two months before I was dx with bc, I had been very ill. My mammo that showed the cancer was done early August, but from March to June, I had been very sick with fevers and cough... even coughed up blood one time. In June, I had an abnormal chest x-ray which led to ct scan. Long story short, I have what they believe is Histoplasmosis... we're watching it currently. My lungs look like someone who's had TB and pneumonia and there are very tiny nodules as well as a couple of very small ones. When I was dx with bc in September, my mind went racing to think that the stuff in my lungs was also cancer. I had myself thinking I was going to die. In fact, I am alive and my BS has Histo too. The point to this is when we have this kind of dx, we automatically associate every other abnormality to cancer until it's proven otherwise. Prior to our dx's, I'm sure most of us didn't do that. It really sucks that cancer makes us so fearful of every little ache and pain. I'm trying my best to get back to the "prior dx" me, who was healthy. The mind is a powerful thing and I believe the way we think can help to make us ill.
I sure hope you find out this is something completely unrelated to your dx and that it is a very minor abnormality or nothing at all. I'd be a mess too, no doubt. Will keep you in my prayers.
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Cure for the Blues...0
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Where is this Heidi?
I miss the beach so much!
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Claire82 (PMed you)-Same place (different horses)
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One Georgeous Pic!!! such Peace...
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