Calling all TNs
Comments
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Heidi..sailing sounds good! You are at an emotional time right now..the one year thing is very emotional because everything brings back the memories of how your life changed one year ago...I dunno..I guess just be glad that you are one year away from it..it sucks that we have to one day or one year or whatever away from it but we are stuck with it...
Your breast pain is probably from surgery or rads....I still have pain there now and then...yesterday my onc gave me a breast exam that I thought for sure would leave me bruised....if there was anything in there stupid he would have found it!
I don't have any suggestions for you Monika because I had a lumpectomy...so far I have had no regrets....
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same here Monika I also had a lumpectomy. There have been times when I thought to myself, perhaps I would be less worried if they took the whole breast but I've been assured that my decision was right. No regrets.
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Pauldingmom: How long ago were you diagnosed?
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Titan: Congrats on your clean exam. I'm feeling kinda jealous on your frequency... my onc does check-ups every 4 months first year, but she postponed my August date until September, so it'll be 5 months since my last clinical breast exam. Not really happy with that....0
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MonikaV: This is such a personal decision. I was so relieved after my MX and I would do it again today. If you are unsure of your dr's then get 3 opinions, but personally I wouldn't want to have the constant worry. Yes, it can come back, but those percentages are low after an MX. Good luck with chemo tomorrow.
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MBJ...I thought about that constant worry that you speak of...but honestly..I get felt up so much that I don't worry about it much anymore...yes..it is a personal decision..my SIL had a double masectomy plus reconstruction also...she thought I probably should have done the same thing..but I decided against it...I'm happy with my choice..as you are...and that is the thing..you have to be content with your choice..I know that possibly a masectomy is in my future..hope not...for right now..the lumpectomy was what I chose...it's a tough choice...I had my lump 2 days after my diagnosis...with a mx I would have had to wait much longer..I was glad to get it out of there..I did have a couple of calcs in my "good" breast 6 months after diagnosis and if they would have been cancerous..well...they both would have been removed...however, the calcs. were B9.
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Titan: I'm with you. I'm good with the decision, and it all (dx & lump) happened pretty quickly. If I have a new primary and a mx in the future, so be it. I had extra calcs in the affected breast that they took out when they did the lump, so I wouldn't be worrying about them. My onc feels the surgeon & I made the right decision in keeping with my dx, and expresses optimism about my future.
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Great sail today. Floated around for hours alonside the boat after lunch and saw lots of dolphins. Went for All-You-Can-Eat snow crab afterwards along with a kick-ass cocktail.
I'm bushed and headed to bed.
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MacFry out sailing. Aargh!
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Titan: I didn't have the option of a lumpectomy, I had too much cancer and not enough breast left. If circumstances were different...that;s why it's such a personal thing. Some feel better having both breasts gone and I couldn't bring myself to that place. There are so many things to consider. I feel lucky for not needing radiation and onl y the chemo and mx. At least I could get my breast rebuilt. When I was first diagnosed I didn't want chemo, radiation or an MX, but that isn't what was handed to me.
Heidi: Looks like a great day for a sail--and what a great mascot!
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Just to add another POV~ I had a uni-mx 1/09 and was pretty uncomfortable (physically) and couldn't get the worry out of my mind that the other breast would get a new primary. However, my BS wouldn't agree to a prophy on the other side. Months went on and I went through chemo. After chemo I had a mammogram on the right and was told that there was an area "to watch". I was having none of the wait-and-see approach and went to my BS with an ultimatum: either he would remove the breast or I would find another BS who would. So, I got the prophy. In the meantime, my aunt died of OC so I had an oorph too. I can't say enough how having these procedures has helped me. Of course, I still worry about mets but I no longer worry about a new primary in breast or ovaries. FWIW~ I tried to go without recon... I *was* very comfortable (physically) but my body image was terrible. So now, I'm going through recon, and as MBJ can attest, I'm hating it.
So there ya go: my "pro-bilatMx" opinion.
edited to add: I never had a choice for a lumpectomy because there was DCIS in my IDC breast that was distal to the primary tumor. So, my choices were 1. one, 2. both, 3. w/ recon, 4. w/out recon. I didn't need radiation because the lump was far from the chest wall.
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Heidi - Happy cancerversary! Sounds like your "celebration" was perfect.
Titan - glad your check-up was clear. Good luck to the rest of you getting checked in the near future!
I also did not have a choice between Lumpectomy or MX - I had 4 separate tumors, DCIS and LCIS, everything was too spread out so I had to have a MX. My BS also recommended that I remove the other breast because of my age and TN status - it was my plan to do this anyway. It is a very personal decision...good luck with it!
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Hi all. Hope you are all doning well. I had a lump then a left MX. Glad for the decision I made and will cross that bridge when I come to it if need be about the other breast. (hopefully not though:) Does anyone know how soon you are supposed to have another mamogram or any other testing? I had my MX in May and have had no other testing since then. Not sure if they wait until after the chemo and stuff is done or if an exam determines rads or not. Thanks for any input. Hope you all have a great day.
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Jenn - I had the mammogram that started this whole bc mess last August. I haven't had one since but am scheduled to have it done in September. I finished rads at the end of April and the doctors wanted to wait 5-6 months before doing it.
Sherri
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I had a bilateral mastectomy because of my age basically and not wanting to worry about the other one. I decided on this before I knew that I had triple negative breast cancer and before I knew I was brca 2 positive. My surgeon said I could go with a lumpectomy if I wanted but also told me if I was his wife because of my age he would recommend the mastectomy.
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I just saw my surgeon yesterday and she basically said the same thing your surgeon said, jenweg. She would do a lumpectomy but she more highly recommended a mastectomy. I am doing chemo first so I have to decide by October. I will probably have a mastectomy.
Heidi: Loved the picture. Congrats on your anniversary!
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Monika - it really is a personal decision and I know it can be a hard decision. I had to remove one breast and made the decision to have both removed at the same time. However, not everyone can make that kind of decision as easily as I did. There are so many choices and options thrown our way that we become overwhelmed. With the lumpectomy vs masectomy - I think it's a crap shoot. I have one co-worker that had a lumpectomy and is 6 years NED, another that choose the lumpectomy and has had 3 recurrances. Both are healthy and exercise. If it were me and I was on the fence, I would research as much as I could, then talk to my doctor and point blank ask him/her "if it was your wife/sister/mother/aunt/friend" what would you do? If all else fails, go with your gut. What does that voice deep inside tell you, not the voices of people around - the one deep down inside.
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Whatever you decide Monika..will be the best thing for YOU! Good luck with your decision! Your onc. should help you out..even though I understand that they really aren't supposed to persuade you one way or another.
Sometimes I think I took the easy way out but I'm still happy with it..I was in the hospital at 9:30 and home by 3:00..no drains, virtually no recuperation time..I had it done on Friday, back to work on Monday...I am being followed very carefully....I'm felt up all the time....but honestly the anxiety has lessened over time...I also freak about surgeries..the lump was the first time I had ever been knocked out..I was scared! I was glad to be able to go in and come home the same day.
I dunno..at this point if I had to do it over again I would still go with the lump...BUT...I went with the lump because my BS said I could....the stupid tumor was in my upper out right breast..it was very simple to get in there and get it out with very wide margins...there are alot of factors that come in to play here....
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Titan: It's good to hear your surgery went so well. Home by 3:00 and back at work on Monday? That's great! I am a little nervous about the whole surgery thing, I've never spent much time in the hospital. It sounds like lump. was the best for you. I like your suggestion about checking with the onc. also.
MonikaV: I know it is a hard decision to make, but you will do fine. There is a lot of good advice on this thread.
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I also had a lumpectomy and was in and out by mid-afternoon. I had a separate surgery later to check my lymph nodes and, again, I was in and out in one day. Both of my surgeries were on a Friday and went back to work on the Tuesday after each...giving myself Monday as an extra day to recoup.
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Boy, you gals who were able to jump right back on the saddle after surgery are absolutely amazing!!! I'm 3 weeks out from surgery (lumpectomy and axillary dissection) and I'm still having problems. For some crazy reason, I continue to bleed inside the breast, so my Surgeon (who I adore) has to continually asspirate. That was absolutely no problem till yesterday ... the numbness is starting to wear off and I can feel him asspirating now (LOL). Anyway, I had a low grade fever for 2-1/2 weeks cuz of the whole mess. I thought I'd be back to work way b/f now, but I'm still sooooooooo tired. I am obbviously not near as strong as most of you
I had multiple tumors (6 of 'em), but the Doc felt a lumpectomy was doable b/c they were clustered together fairly well and b/c of the size of my tata (can you say BIGGGGG!!!). Anyway, he said he believes in "first saving the life" and "2nd saving the breast," which is why I chose the lumpectomy. Since then, I have had 2 ONC tell me I need a mastectomy
I have decided to go foward w/the treatment (chemo and radiation) and cross that bridge at another point and time. I may live to regret it, but I can't imagine more surgery at this moment. Also, all the reconstruction scares me!!! Have I mentioned that I'm a big medical whimp!!! (LOL) My best wishes to you all 0 -
Me again cuz I forgot to ask you gals if any of you have ever heard of or had "Ixempra???" It's a clinical trial my Doc is doing for Triple Negative gals. She uses the AC first as normal followed by 12 treatments of the Ixempra instead of the Taxol. It's such a hard decision!!!!!!!
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Hey fellows TNS's. Wow, a land of those like me, whoo hoo. I can relate to all stories regarding to making decisions, lump/mx, etc, I have been through them all. 20 years ago (at age 31) had Medullary Rt, breast, lump/radiation, 7 years ago had Medullary Lt breast Lump/Radiation. Was SO HAPPY that I could keep my breasts and did so well through treatment that I almost felt guilty about what others had to go through.
Then the whammies started coming, 1 1/2 years ago DCIS rt breast, Had to make the choice to do one or both. As much as it pained me and I still miss my breasts, I just couldn't see having CA for a 4th time, so had Bi-Lat in Jan 09. May 09 got the positive results on BRCA1 testing but was already dealing with the fact that my skin was being stretched too thin by the TE's due to prior RADS, so I had IGAP surgery in July 09/Oct 09. Was ok except for the crooked nipples and hole that took months to heal but that is for another time. Anyhow, had prophylatic ooph and salpingo in March of this year and guess what CA for 4th time - fallopian tube cancer, (I really need to change my screen name). Are ya kidding me I thought? I just finished chemo last week, then am having a prophylactic complete hysterectomy on 9/2. Which I hope to hell is negative. So, as you can see I no longer feel like I got off easy and understand so much of what many of you have gone through.
Hope you like my avatar, it is my "are you effing kidding me face", lol. My cat and I have similar personalities!!! But the incredibly remarkable thing is that I am still here 20 years later and hope to be for another 20. I was too young and too naive the first time, I didn't know a soul my age who had cancer, the 2nd time was just a repeat of the first so I knew what I was dealing with, but the 3rd and 4th times........it just gets harder and harder to deal with. Thanks for starting this thread, let's hope that researchers can figure out what to do w/us TN and BRAC1 folks.
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Janny..I believe that there is thread about lxempra around here somewhere....let us know which one you decide to do...
Lynne3 (or 4)...I do love your avatar! We have 2 cats who look at us like that alot! You know, with cats (and kids) that we are stupid and we are lucky that they even look at us at all!
So...you went 13 years without any reocurrence?? Was your first cancer TN?
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Penny - I had a bilateral mastectomy last year (a year ago yesterday) for DCIS. I was ER/PR negative, so no Tamoxifen. Well, 8 months later I found 3 small lumps in my right breast, very close to where I had the DCIS the 1st time. Even with a BMX, it can come back. I'm on chemo and will have radiation. Onco's tend to be very aggressive with triple negatives!!
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Kitty - I feel like I learn something new everyday. You had 3 lumps come back in the area where the breast were removed? Did I read that right? You may have said that in prior post and I missed it.
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I think we do learn something every day....I never thought about feeling up my scar..never ever thought about it...duh....the last few times I have been felt up though the drs. always check out the scar...so many things to watch for and think about...it can be overwhelming sometimes..
Most of the time I'm very good and can forget about cancer for a long period of time..then it just hits me...and I think..did that really happen to ME??? And still happening....for the most part though..it does get easier every day..I feel better every day..it has been one year from chemo and my energy level is very high...I still have problems focusing on certain things...like projects at work..I just can't concentrate..hoping that comes back
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Everyone: Did I mention that my Onc is having me take Alpha Lipoic Acid 600 mg 2 x per day for chemo brain? It really, really helps my ability to think clearly and my energy levels. It doesn't help completley with the short term memory loss, though, but in time he says it should help alot!
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Titan,
Once again we are on the same page (literally & figuratively). I do check my scar area though. Trouble is, the"topography" has changed so much I hardly recognize it!
Plus, I get the willies when I probe too deeply. That's why I get a little nervous when it seems sorer than usual. I'm beginning to think that my physical activity has resulted in some pectoral soreness in the affected boob. Maybe rads has left it a bit more susceptible to a pulled muscle?
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I would just like to say how I respect you all......but there is something wrong in our world when so many people are getting cancer and so many big drug companies are making millions, of your pain and anguish....they dont want a cure ...no money in a cure...sorry but thats how I feel ,my daughter has TNBC and it has come back just under 2 years she has been doing chemmo for the past 3 months you see and hear of so many young and older people with this terrible disease.....It makes me mad very mad and we shouldn't have to take this.Wake up drug companies you know what's it all about!
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