Calling all TNs

MBJ:  Take a break... we'll look for your return and will be thinking of you!  Go out to the beach if it's a pretty day for me!!  I don't spend a lot of time on the forum because I want to make sure to live the wonderful life I have, even with the not so wonderful things that happen sometimes!  But I come here daily just in case someone posts something I feel particularly drawn to responding... I come to help if I can... give support when needed... and ask for help or guidance when it's "my" turn.

Michelle:  So hoping for negative results!  Just keep in mind if you turn out positive, it's NOT the end of the world!!

Kelben:  Remember the waiting is the worst.  A friend of mine had that dx a few years ago, she must have been in her mid to upper 30's, and she's doing well.  Praying for you.

MBJ - so nice to hear from you. 

Kelben:  Thinking of you and hoping for the best.

Lovelyface:  OMG - you made me tear up.  I am so sorry.  Please have a good cry, get it all out.  I am sure you will see your mother again you will just have to make it happen.

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.

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!

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.

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?

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!

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!!!!

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

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.

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.

hanami,

Your post is like a breath of fresh air.   Thank You!

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.

Michelle67- I am so sorry about your bad news.............Big hugs..............

Isabelle XX

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.