Calling all TNs
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Stitch, it's possible that differences between our situations may mean a lumpectomy and rads is better for you. My 2nd opinion surgeon was strongly suggesting lumpectomy until he reviewed my MRI and everything else. He then changed his mind and called to tell me he recommended Mx and soon, which really scared me as my surgery had just been scheduled for 4.5 weeks out. I then became a complete nervous wreck while I waited for surgery. Fortunately they only found DCIS after final pathology, but the MRI had suggested possible additional cancer in the same breast, and spread to lymph nodes. My BS told me the MRI was not looking at the very large hematoma from my biopsy that she could see and feel, and turns out she was right. That possible spread may have been part of the recommendation for mx.
All that said, I know myself and my anxiety level, and I have never for one minute regretted my decision. I am in my 50s, and otherwise healthy. No breast cancer in my family. I hope to have many years ahead and want to try to put this behind me. Please keep us posted on your decision.
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Thanks for the welcome, rockymountaingirl and Mncteach. I'm still in early stages, of course. No chemo recommendation yet from my MO, but radiation for sure. I don't think my hospital does cold cap. My hair is fine and straight, used to be thicker, but age and perhaps thyroid slowing has taken a bit of the heft out of it. I'd rather not lose what I have! But it's a small thing in the scope of it all, I think.
Thanks again. The encouragement and information here is amazing.
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SuQu31 - Thanks for the explanation. My MRI was done after biopsy too. I will find out those results on the 9th. This is so confusing. I hear of women who are so glad they did BMX as the pathology showed things that the MRI didn't. I also have a friend who did lumpectomy with rads and chemo for her stage II TN, and 6 years out is fine. I know where the DCIS is was reported as being dense and sclerotic. I don't want to over treat, but I guess you just have to either go with the gut or go with what the Dr recommends. Sigh.
MountainMia - welcome! I'm a newbie as well, as you can tell. My hair is fine and straight as well. Great husband, healthcare and insurance is so important. Happy to hear you have all 3! I do too, I think! My only problem is work. I'm eligible for FMLA as is my hubby to help me. Also lucky to have 3 weeks of vacation left to use for recovery. After that, hubby's SSI payments will compensate for my lost pay. I have no disability at all. But, we are very blessed he made the decision to start getting his SSI while still working. He did that to pay down on some bills till he retires in 2 years. A little of that may need to go toward me with no check. But it's all good - we will make it through this!!
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I am new to this post. Diagnosed with DCIS High grade in right breast, then after an MRI biopsy they found I have a 0.2 cm DCIS diagnosis in the left breast, high grade also. My surgeon wants to do a bilateral mastectomy. The area in my right breast is 3.5cm. I know the high grade means a better chance of it becoming invasive but the area in the left breast at 0.2 cm seem a so small. I am in the process of getting a second opinion but this is all so scary and confusing. Anyone else's have DCIS in both breasts?Thinking that is th reason the surgeon is pushing the mastectomy.
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EMD13, so sorry you had to find us here. I’m assuming ER/PR negative since you’re posting in this forum. Yes, that DX could be why he’s recommending BMX, but it’s great to be getting a second opinion. Very smar. I have high grade DCIS, but as of now, awaiting MRI results, only in one breast. Yes, it is scary. We are here for you.
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I think most TN’s have high grade tumors.
I had BRCA testing because I have three sisters, it was negative. Originally, my surgeon recommended a mastectomy for me, because of the IDC tumor size. After I expressed my wishes for a lumpectomy, and after further testing (MRI guided biopsies), they agreed to try a lumpectomy, but that meant I needed radiation. I was really afraid of radiation, but I wanted a lumpectomy, so that’s what we did. It all worked out, but I needed a re-excision, and wound up with breast/truncal lymphedema. It’s manageable.
Welcome to the newbies, you will get through this.
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Welcome to the Newbies. We will support you
Don't forget to list your treatments etc in your profile. That helps others when chiming in assistance.
Val
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Welcome to those who are new; I’m sorry you had to come looking, but so glad you have found such an excellent source of support.
It’s a scary and confusing time. Ask tons of questions and ensure whatever is happening feels right for you and your family.
Sending love and light
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Thank you. The right breast is TN and the left is positive, strange. Good luck with your MRI results
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Thank you for your input! I am anxious to get another opinion and get some questions answered before I can feel comfortable with the treatment I choose
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So the MRI found “something appearing to possibly be benign” in the right breast. So another sonogram before I see the dr on Tuesday. I’ll report back then.
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ufcknights: I was tested for a number of genetic mutations, and found to be negative for the two BRCA mutations. Apparently, some insurance companies will pay for the testing if you meet any of several criteria. In my case, it was my triple negative status combined with a diagnosis at age 60 or under (I was 51). My TNBC status alone would not have qualified me for genetic testing under my insurance policy.
And I don't think that "most" women with TNBC have the BRCA mutation. But if you have a BRCA 1 mutation, your chances of having TNBC are higher according to the article I've linked to below.
Prior to testing, my BS had said the likelihood of having the mutation was still really quite low, like considerably less than 10% if I remember correctly. But there are ethnicities for which the likelihood is greater than others. African-Americans, Hispanic-Americans, and Ashkenazi Jews, for example, are more likely to have the mutation than Caucasians or Asian-Americans. https://ww5.komen.org/BreastCancer/BRCA1andBRCA2.html And there is a difference between the BRCA 1 and BRCA 2 mutations and their association with TNBC. Before I start making inaccurate statements, here's the study I read about this. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6111442/
Hope this helps!
Anne
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Hi there,
This is my first post. I had my first surgery on the first of March, and a few days before that my BRCA test came back negative from Kaiser who had sent it out to whoever does these things. It was the first good news I'd had in the whole journey up to that point, so I was happy!
I think with Kaiser it's the TNBC and under 50 (I'm 47) but it could have been 60. The plastic might have done it too. Not sure..
Now when I say first good news that sounds pretty bad, because I had a lot of good news. It's just that as far as my cancer diagnosis 2 weeks earlier was going it seemed everything that could go wrong was going wrong. Well I had cancer, so bad news number one, when everyone one said it's probably nothing. But it was so big the lump and came out of nowhere, it had to be an infection or a fluid filled cyst. And I mammo-grammed on a friday afternoon and then ultrasound and biopsied on Monday am. So I had that whole weekend. Then well I could just see on everyone's faces at biopsy that this was something.
So I'm like, well wow I have breast cancer. But hey it's the lovely cancer with the marathons and the color pink. So of course I'm like, at least I got the cancer they somehow gave a sexy image, and the 95% survival rates, etc etc. I'm glad it's not brain cancer or butt cancer, ya know, silver linings.
Then the receptor reports came back, and ok negative all around. Well that's not great news but at least I don't have that MetaPlastic cancer, and then I had that too.
So when the Brca came back, with look I passed with flying colors, and that's the first thing my cancer and I had passed, I was happy for sure! I did NOT postpone surgery to wait for the results though. It was something I could have done, but that didn't seem the best move instinctually. I thought, hey they seem to think a lumpectomy is my best option and surgery schedules are tight, let's get on someones schedule and get under the knife. If it's BRCA then we go back and take both breasts and the ovaries, all the lady parts etc.
But it was negative for BRCA.
I'm a KAISER patient. But I did get two second opinions within Kaiser, with one at a different Kaiser location. And I got one outside from UCSF's tumor 2nd opinion board. As well I've already changed my oncologist within Kaiser. I hate to say it, but I do prefer female doctors and especially when dealing with largely female organs like breasts etc.
I remember crying to my friend as I googled my lesser good TNBC prognosis, and then the added MPBC subtype number hit. "Those breast cancer b***s...
... with their marathons and their positive receptors and their 95% survival rates... "
I will never forget that coming out of my mouth. It's so unlike me. But I will be embracing it. Because in the end breast cancer is breast cancer, we all get the color pink and the marathons.
...with their positive receptors, and their new therapies, while I'm taking a treatment developed largely in the 1940's.
I know the 3rd generation drugs are newer obviously. It's in the name right? But that just makes them stronger and more toxic it seems. I do not like being toxified to almost death like a spider's prey. But I will get through it.
Lots of good news since then though. I joined a Relay for Life for example. Oh and now I have a wig that is maybe hot and scratchy at times, but it looks a whole lot better than my regular hair!
So, my name is Fracking I guess for short, I have TNBC of the MPBC subtype,(so it's like a triple negative tumor went out and got knocked up by a cirque de soleil contortionist passing through town and they had a mischievous baby.) In early February my health problems consisted of a cast on my left wrist (which is actually how I found the tumor) and now some circus freak of a tumor type was found squatting in my boob and he's chemo resistant. I'm a recent CHEMO drop out, and thank you for having this forum! My ONCO showed me this cool site today you guys probably all know about right? University of Cambridge prediction tool. She's the best my Doc. On to radiation!
OK I can't post the link so you can google it it's fun. I mean as fun as getting your own survival numbers generated online can be. Really not fun I guess, but informative.
I do not know how you all do it. I'll never know. CHEMO is like nothing I've ever experienced. It felt like being dryer lint. And it smelled that way too. I flunked/dropped out so we'll never know if it would have gotten more bearable for me. But I hear that no in fact if it's bad enough already it builds and gets worse. I'm guessing short of developing a serious heroin habit in CHEMO or something, that's just how it feels. And still better than a heroin habit. That's got like 100% mortality rate, a heroin habit. So there are worse things to have.
I'm just not sure that they feel so bad, are quite so common and also deadly and also not considered to be against the law.
I'm going to close by saying ONE in EIGHT is a really big number. So much money should be going into making these treatments more bearable and successful. Hard to believe that this is all they have for TNBC. I never want to hear the word side effect again. So long this first post. Did my hippo show?
I hate the robot test. That's awful. Captcha should be sued for wasting our time and our lives. Which of course has become more precious. So silver lining.
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Fracking— what a first post! What a sense of humor and irony! I wish I could just reach out and give you a hug! Good luck with radiation. So sorry you're a chemo dropout! I love the hippo and the mischievous baby analogy!
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Fracking - I know exactly what you mean about the positive vs negative thing. Many positive cancers worse than my own since I'm I too am braca negative. Stage 0 DCIS homone negative , comedo, high grade, but as of now still contained in the milk duct. Even with all those "bad" things associated with my DX, they still recommend only lumpectomy and rads. So I'm sure my surgeon is going to look at me today like I've lost my mind to be considering BMX. I don't want rads and I don't want chemo down the road. They've found something, probably benign in the right one, too. Probably another biopsy based on the other DX. I want this over. Otherwise, I'll live in fear that this will return when hubby has retired and we have less funds to take care of things like me being out of work.
Yet..... I know that so many have it worse than me, so who am I to be complaining???
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Fracking: It's not often, maybe never, I get a chuckle on this site.
Update on my wife: She once had 3 BC's at once, one of witch was metaplastic under her right arm. Lifetime AC and radiation got rid of that mess. She burned through the AL's and temoxifin, none of which helped. Next was Xeloda witch worked for a time for about one year then it gradually stopped. Also the cancer then turned to regular old fashioned aggressive TNBC with extensive mets to spine and hips. Next came Halaven (eribulin). It wiped out the cancer after just 3 infusions. She's still clear after 2 PET scans and she's been off all chemo's for the last 21/2 months.
Lately she's been a powerhouse of work, cleaning out all sorts of places. She's even re-learning French via CD. Nail biting time as a PET scan is due next week.
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mike3121 how fantastic and encouraging is this??? So happy for both of you!!
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Mike, Great news on the Halaven! I know that you and your wife must be on pins and needles awaiting the upcoming test and I hope the results will be favorable.
Stitch, I can certainly understand why you are considering BMX surgery;, even with such an early stage scenario; however, I also understand the recommendation for a lumpectomy and radiation. You may have already discussed all this with your medical team so apologies if this information is redundant, but it's important to know that the mastectomy surgery doesn't provide any benefit in terms of a future recurrence over a lumpectomy and rads. The cancer can recur in, for example, the chest wall, even if your breasts are gone. Assuming your lymph nodes are negative, the BMX would allow you to skip radiation . The trade-off is that BMX surgery is generally a more challenging surgery and recovery than a lumpectomy. Further, if you choose reconstruction vs. going flat, there will be an additional surgery and possibly issues with tissue expanders or abdominal pain if tissue from that area is used vs. implants.
Choosing one surgery over the other will not likely have any significant impact on whether you would face chemo in the future. The breast surgeries and rads are considered a local treatment; that is, they only affect the breast area. In contrast, chemo is considered a systemic treatment that impacts the entire body. Although any tumors obviously need to be removed, it's not the tumors in our breasts that really present a threat to life. It's when the cancer escapes the breasts and metastasize to crucial organs that we're in jeopardy (liver, lungs, brain).
These are general, sweeping statements and I have no medical background. I just know that it can be confusing when we are first diagnosed and it's easy to think ridding ourselves of our problematic breasts neutralizes the threat. I would suggest you instead ask questions like: Are you happy with the size and shape of your breasts? If so, the lumpectomy / rads option probably makes more sense. Will the periodic mammograms cause you great anxiety if you keep your breasts? What support do you have in place if you go with the more difficult surgery? What reconstruction options would be available? Because I'd lost 100 pounds, the quality of my skin meant it couldn't be used to craft a new breast with my own tissue. Implants typically mean an extended period of tolerating having tissue expanders gradually filled.
There's a lot to consider and it can be overwhelming and scary. I hope others will correct me if I accidentally made any misstatements. Whatever you choose, I wish you peace of mind and favorable results.
Lyn
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Lyn, I appreciate the input, andyou are actually spot on! I saw my doctor today. I felt a very huge relief when she addressed all of my questions and concerns in such a way that I have chosen lumpectomy with rads. It was like this huge weight lifted from my shoulders. Now I’m not looking forward to rads. I have “cheap Irish skin”, so I’m not expecting an easy time of it, but I’m also confident and happy with the decision.
I have a biopsy on the pea size and shaped growth in the right breast on Friday. Once that’s done and comes back benign the surgery is May 25th.
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Happy Wednesday morning everyone.
It's the tenth of April here in California. Amazing red low crescent moon at midnight last night. Anyone see it?
I see Stitch is more newly diagnosed than me. OK, my DX was 2/2019. I'll say, I like the idea of offering insights. And Info. I think they are insights and we are here for a reason in this space typing to each other, and we have the opportunity to channel the best of ourselves and the best of the doctors we've encountered. So I'm letting my voice sail.
But right now I have to go do early morning LABS.
Then run off to work, because I'm still in treatment. I'd love to hear more about RADS and BOOSTS etc.
MIKE: As well all of what Mike said. It's slightly in need of decryption for me. I get his wife had MPBC (one tumor but not all of her tumors) but I was lost in some acronyms. AL (is that Andriamyacin red devil stuff they call A? and something else? I can google it later.) LIFETIME does that means the maximum lifetime dose?
SO was the original 4 cm IDC the one that was metaplastic? Then it changed to TNBC? And was the Plastic PR+?
Oh and tell your wife I'm at my desk job goofing off all day so I'll check in (I work at a University) and I speak French!!! If she wants to practice. She could join my French Club on DuoLingo. DuoLingo is the best. It'll just be the two of us until we get others to join. I lived in France near the Swiss border for 7 years. It was long after CHERNOBYL but I've decided to name my tumor the chernobyl shark or something. It's a work in progress. Can you name things after they're out? But of course the only thing that kills a shark is another shark or a giant squid. I should name it chernobyl's mouse or something.
Anyway everyone there blamed their minor and major cancers on Chernobyl, and my husband's French and Swiss friends had an inordinate amount of cancers for 30 year olds. No breast though. Anyway, I digress. Definitely needs a weaker name. Like a chernobyl minnow or something if it's going to be a fish. Any way.
I'm seriously thinking about throwing in some red herrings at this point so I'm less identifiable online. um ...I also speak Arabic and I lived in Canada for five years. These are red herrings so not true.
STITCH: The way I think about lumpectomy is it gives you the most options. Which you want. I wanted an BMX (not a dirt bike of course although that would be fun, are we really calling it an BMX?) as well at first STITCH. So happy with my LUMPECTOMY! So happy I'm having it fixed/filled whatever and that's up next before radiation. You can always get a Mastectomy later if you want one. My two cents! ALso if you are offered even briefly a plastic surgery consult, jump on it. That means insurance will pay and just let the plastics guy do his thing. They live in another plane those guys. You'll thank yourself later. If they don't then maybe ask? Also if it's so small then maybe not even a thing. Mine was 4 cm. So bigger. In 16 days it went from 35mm to 40mm. The plastics grow like well tumors I guess but the SUPER fast growing kind.
Late for work and labs...
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Hi Fracking. I named my tumor Boris, for no other reasons other than 1) Boris seemed like someone who would barge in uninvited and take over and 2) I've never actually met anyone named Boris so it seemed "safe".
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Sorry Fracking for the confusion but her real story is complex and long.
My dear wife doesn't use the computer much with the exception of Amazon and eBay.
Her case is very complex and it all started in November of 2012. She was diagnosed right off with 3 different breast cancers at once. In her right breast was a large ER/PR+, 100% estrogen, Grade 1 tumor. Inside that was an ER/PR+ 30% estrogen grade 3 tumor. In 9 of her 19 lymph nodes removed was triple negative metaplastic breast cancer with spillover of metaplastic into surrounding tissue. Lifetime AC (maximum allowed without causing heart damage) and radiation got rid of that mess. No taxol as she was highly allergic to it and went into allergic shock and passed out in the infusion room.
Months of various estrogen blockers such as arimidex, aromasin and tamoxifen failed to stop the cancers return. A biopsy was done on a metastasis to her hip which showed it 2% ER/PR+ and the rest TNBC. I'm leaving out some other things like an operations for a huge ovarian cyst and a large benign tumor on her kidney.
She was then put on capecitabine (Xeloda) for about 18 months and that kept her extensive spinal and hip metastasis (from small to medium size) in check. Eventually, it stopped altogether and progression ensued. The Dr. said her spine lit up solid red from top to bottom.
Next, her oncologist tried eribulin (Halaven). He related that it seemed to work well on TNBC and especially when capecitabine failed. Wow, did it work! Her last two PET scans showed her clear of all cancer. She was taken off all chemo 2 ½ months ago and is scheduled for a PET scan one in two weeks.
I recently ordered her some Pimsleur French language CD's. My daughter and her boyfriend are also studying French. Her boyfriend is French Canadian but hasn't spoken it in years. Surprising my wife can read French quit well but has problems with pronunciations.
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Hi guys,
Well today's the day my hair gave up the root. Can you imagine? I was suppose to have two more days! It's on my calendar. April 12th: 2nd chemo treatment: you will lose your hair on this day! So I had the party planned. I bought the clippers, invited my daughter and the cats. Considered doing it last weekend the buzz, but in the end a head of hair is convenient. So I thought, ok, that Friday night we buzz it or on Saturday am. Over milkshakes.
Well, today was the day my hair had in mind. Brushed it out, it'll pull out. But it will also stay put if I don't annoy it. So, whatever. Now I'm walking around with extra deader hair on my head wrapped up in a wig cap. I feel like a bride wearing her wedding dress after the wedding still. I'm going to keep it in that creepy way until the appointed time and I'll shave it Friday pm or Saturday am. I threw the wig in the car this am planning to wear it at work but forgot the wig brush. etc etc etc etc etc
So trial run failed sort of day. Maybe it's on Friday that it falls out just without pulling I don't know. I do have a strange urge to shampoo with elmers glue or something.
Anyway. Today was the day and I can say I shared it with all of you! Mike's wife, Mike, Kber, Stitch, whoever started this thread, VLH, Titan, the moderators, everyone here was there the day my hair called it a day!
My hairs like F*** Chemo, we'll see you on the flip side! And today was the day...
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Fracking, there is a link to abbreviations under the forum jump up on the left. Welcome. I actually found it so much easier to not have to worry about my hair. I liked my wig, it was better than my real hair. No need to style it, just throw it on and go.
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Nice to see the thread keeps moving! I’ve been sucked into a Game of Thrones marathon while i’m stuck home recovering from reconstruction.
Hope everyone is doing ok today. Good luck with your wig, Fracking. A baseball cap was my favorite head covering but probably not suitable for work!
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This doesn't seem to have been picked up much in the press, but it would be a big step forward, if it came to fruition. 10 years seems awfully long, tho
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Fracking— I am at Taxol #2 today and just reading your posts. Thank you! Your humor really helps brighten my day. I must say, your hair is being very inconsiderate, you had the day marked and the invitations out and it decided to jump ship early!! I have a wig, but don’t wear it. I just didn’t feel like me!
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Flynn, it sounds like they wouldn’t give the women with NUP98 AC, but taxanes. But most of us are getting taxanes (paclitexel, docetaxel) anyway. *shrug
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I hear you but I think AC can bring some pretty serious side effects so I would have been happy to know it was working before completing 4 nasty cycles. Some people do have progression during ac. I think the ability to check for chemo response, via simple blood test, may end up being a good thing for those who would respond better to Taxol & carboplatin.
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Flynn, I agree about wanting to be able to judge effectiveness. I had my chemo prior to surgery and one positive effect was we could feel the timer shrinking. It helped me cope with the negative side effects to be able to see and feel the positive effects.
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