Calling all TNs
Comments
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Wanted to make everyone smile today with a funny story...I am very paranoid about my wig and feel like people are starring. Went to get coffee and pastries with my 10yoa daughter. I was moving things around in the car before I got back in and set things on the car. I went to drive away and some guy was pointing at me and I said to my daughter look at that guy pointing at my wig, how rude! She witnessed this too and thought it was very rude. We pulled out of the parking lot and I reached for my coffee.....I had left it on the roof of the car! Obviously the guy was pointing at the coffee and never noticied the wig which I need to realize most people dont either. My daughter and I laughed for like 10 minutes....Kelley
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Too funny. I had one wig that fooled even my drs., but I felt very self conscious in my other one which was longer and thicker. I felt better in my one wig than in bandanas or hats though. But it still felt like people "knew".
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Perhaps I should have added that if my surgeon had not gotten clear margins a mx would have definitely been a possibility. But, with my surgical outcome a lump was perfectly adequate.
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I remember being in large groups (like a basketball game or college orientation)..and looking around at all the women..wondering if I was the ONLY one that had a wig on. I think that there was only one time that it was obvious that this lady had a wig on...(and that was at the chemo place)....Unless people knew me b-4 there was no way to tell it was a wig..My DH would say.."when we were away and no none knew us)....see you are just like everyone else in this room..no one knows you have a wig on...it was kinda of comforting...
I think there are alot of issues on lump or mx...several are brought up here and they all make sense...size of tumor...if you are small breasted and have a larger tumor..it would make sense to have an mx.... I'm 36b with a 1.8 tumor...you can't even tell anything was taken out....
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I've been second guessing my Lumpectomy from day one. But I always remembered that if it didn't work they could go in again and take our more tissue and I could also go ahead and have the MX. I didn't really comprehend all the triple neg. stuff until after my surgery. It was my oncologist that laid it all out for me. Would I do it different now? Hmmmm.......No I don't believe so. Everything is going along so well (knocking on wood) and I am happy with the way things turned out.
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A funny wig story...
I was separated from ExDH (No he's still a DH, just not a Dear Husband), I had kept my BC private and had seen him on occasion. He came to the door once, and I quickly slipped on the wig, and answered it. He complimented me on how he liked my new hair cut. He couldn't even tell it was a wig, and we'd been married 22 years!
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So funny we're having this conversation today. I was at a client meeting this afternoon, my client suspects something is up because I can't attend an annual out-of-town meeting that I usually do (I cited some medical appointments, and "yes, I'm doing fine"); also my wig was noticed awhile ago as a "great new look." Well, today, my client was standing really close to me, and her eyes kept flitting to my hair and eyebrows (not!) and skin, like she was checking me out ... honest, I wasn't imagining this, it really felt uncomfortable.
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People can be so rude without meaning to be. Went to Red Lobster last night after work for dinner with DH. He didn't notice one person staring at me, but I noticed every one of them. I wear scarves. Wig when I was 17, but now, who cares, the damn thing itches me to death. Anyhoo, it isnt so much the staring that bugs me, it's the "pitiful" looks LOL I am not to be pitied. That makes me feel very very weak and angry. I'm going through a rough patch right now. That's it. Nothing else.
So, as I prepared to go to my youngest childs high school graduation tonight, nice dress, high heels and scarf on my wee bald noggin, I reeeeeally hope I don't get those looks. I think chemo has eaten the lining off my last nerve LOL and I may bite.
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My hair is growing out now and is curly short, almost looks intentional. I never wore a wig and after I had enough regrowth to cover my head I stopped wearing scarves. I had an elderly customer I hadn't seen in years........... come in he looked at me as he walked by then leaned over to my co-worker that he was talking to and "whispered" WHAAAAT HAPPENED TO HERRRRRRRR. This happened right after I was called sir by the guy at the deli. It was the only time I ever cried about my hair. Looking back I do see the humor.
Pameljo - I had lost my hair in August and was bald for the ring ceremony/mass that the school had for the seniors. I was a little worried about the look, but I put on my "dress" scarf, knotted the back, put on a nice/comfortable outfit and big sunglasses and pulled it off beautifully. You will too. Enjoy!!!!! My daughter just graduated a few weeks ago - what a wonderful time!
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At the risk of sounding boastful I had more people say how fantastic I looked during chemo than ever before. It was like "cancer becomes you". They were shocked. I guess they expected to see this gaunt, hollow-eyed former person they knew and were surprised to see how well I was weathering the storm (at least on the outside, anyway).
Truthfully, the very chic scarves I wore brought out a side of me I hadn't bothered to project or develop pre-cancer and, I *really* learned how to apply eye make-up. Now, with short hair my eyes just POP, and everyone is telling me to keep it short. I intend to... man, is it easy care!
I think the sicker I was the more determined I became to look "healthy". The positive feedback I received went a long way towards making me feel better, even if I remained frightened on the inside.
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I also had a lot of people tell me how much better I was looking. Hmmmmmm Cancer, surgery, chemo, rads...I looked better than I did when I was healthy living with ExDH!
I had one older gentleman (70ish), who came to visit my boss regularly, stop by my office when I finally decided to go without any head topping at all, and he said "You cut it kinda short this time, didn't you?" I thought that was pretty funny. Although it made me self conscious about just how short it still was.
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I kept my head covered quite awhile cause it got COLD! I made the decision to uncover when I could no longer see scalp through the "seedlings".
Now I really like the new look and am hoping the color remains...it's a Jamie Lee Curtis look that I like... much to my surprise and amazement.
Even got a second ear piercing since my ears show now!
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You guys crack me up..dick heads and screw cancer...man..I think we all may have an attitude!
Love it!
Last time I had an appt. at the onc...they asked me if I had a co pay and I said yes.but just bill me..the receptionist said..but you have to pay NOW and I said NO..JUST BILL ME..OK?...She just looked at me and scurried off and checked me in...I almost felt bad but where I go they are so f'up sometime with the billing...I just want to see it in an invoice so I can keep records.
I'm thinking..I have just been through hell..don't mess with me about this trivial stuff...
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Yea Titan.... I totally understand. I've been billed to death, paying as I can, and I'm not really sure where I am with it anymore. Some guy called the other day to ask if I was going to send a payment on a chemo treatment. I said "could you send me a copy of a bill so I can see where I am please." He goes, "no, you owe it, you know you owe it, why not pay it." I go, "You are an ass, you know you are an ass, so why not admit it." And I hung up.
I got a copy of the bill a couple days later.
Graduation went well. No one really stared. My Dad told me that although I felt like Hell I sure did look good.
Made me feel special. My new husband had my ex husband come over for a picture with our girl, and his new wife was cut off mid step to join in. I love ruining her day without tryin.....LOL I think I've lost my give a damn. It's busted. Chemo ate my give a damn!!!!
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hhfheidi,
You are now officially connected to both me (as a fellow trip neg gal) and my 16 year old daughter (who is a HUGE horse fan---she does chores at a nearby stable daily for the opportunity to "half-lease" a horse, and she LOVES it there). When I read your description, I could totally picture both of you in your "barn clothes"! . . . .but sure hope and pray she won't have to share the trip neg with either of us!
And who could not be frightened on the inside---this whole sh**** deal is incredibly scary--even when one is working hard to stay postive and hopeful and fight the beast like crazy. I had my first treatment today and am doing fairly well so far . . .think it went as well as could be expected----heading to bed now, and we'll see what tomorrow brings.
Laura
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Happy Memorial Day weekend everyone!
Just got caught up reading everyone's post - wow there is a lot of us.
Question is how do I know that I am getting the right treatment even after all of the people I have talked to? Anyone in the same boat as me with treatments -
4 AC every 3 wks then weekly Taxols for 12 wks
No radation? Why do some get this? Is rads the same as radiation? Sorry to be asking some dumb questions but someone once said there are no dumb questions just smart ones to keep you going!
Thanks and ((( Hugs ))) to all!
Kelli
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kad - did you have a mastectomy? If so, perhaps that's why you're not getting radiation. I had Taxotere and Cytoxan for four rounds and then radiation but I had a lumpectomy.
Sherri
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I'm not sure how they distinguish who get Taxotere and Cytoxan and who gets Adriamycin and Cytoxan then Taxol. I had two rounds of T/C back in Sept. 09, and was taken off due to toxicity. My tumors were very small in both breasts and I had bi lateral mastectomy, so no radiation. But, my breast surgeon didn't get all my breast tissue out and I had a recurrence this year. Now I'm on A/C (because I can't take Taxotere) for 4 rounds, bi weekly....then 12 rounds of Taxol, if I can handle it. Taxol is a taxane, and so is Taxotere. Onc is quite confident that even if I cannot tolerate the Taxol, I'll be fine. I'm taking radiation this time after I finish chemo. He's being very agressive with me since my initial bc was er positive and now I am triple negative.
Rads are the same as radiation.
There are studies that show that dose dense chemo (bi weekly) seems to treat our type of cancer better, however, I'm a firm believer that if you truly do not trust that your cocktail will work, there is a test you can have ran to see if it will indeed kill your cancer. It's a screening where they take YOUR cells and see how it reacts to YOUR chemo. Ask your onc. They don't do it much in the states however it is widely used in other countries.
Radiation is like a failsafe of sorts. When I was 17, I had Hodgkins lymphoma, and there were huge tumors behind my heart. Chemo shrank them, however, when it was time to have radiation, they were still very visable. Radiation bombarded them and they disappeared. 30 rounds, full mantle. So, what chemo can't eradicate, radiation will. Believe that.
Positive attitude is everything. Laughter is awesome medicine. We are going through so much with our bodies and emotions. It's ok to cry, but sometimes you just have to laugh at the ludicrousy of it all.
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HI, don't fear chemo...I was lucky and flew through it to my Dr's surprise, so can you. Keep a strong mental attitude and put the rest in God's hands. My hair started coming back in right after the last chemo.
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Hi,
I found dent in my breast and a lump 1 Aug 09 while getting ready to take a shower, Diagnosed 25 Aug 09 after biopsy. Said to be Stage 1 1 cm, TN Grade 2. Live in FL but decided to go to UCLA Jonnsson Comph. Cancer Cnrt in Santa Monica CA to Dr Hurvitz whose special interest was TN. At that time I asked God to take care of me, I was putting this all in his hands. I had done what I could, finding what I thought was the best hospital and Dr's for my kind of cancer. I was planning to have a bi-lateral, but both my Oncologist and my Surgeon talked me out of it... Had lumpectomy October 7, two days after my 69th birthday. Bad news, it was 5+ cm, 5 of 6 nodes positive.now stage III, now need mastectomy. On Oct 27 09, I started a 6 cycle, 4 1/2 months of Taxotere/Cytoxin chemo. According to my Dr's I flew through it. No nausea, some joint aches the first week of each of the first 4 treatments. Was tired however after the 3rd cycle. Shaved my head into the 3rd week when it started to fall out. Biggest chore was driving 350 miles round trip to Santa Monica from my sons fror treatment, thank God for my husband. Had mastectomy 5 March 10, found another small 1 cm cancer. Hated the drains, they were more uncomfortable than the chemo. On a pre-radiation visit with my radiologist, I pointed out to her that I noticed a small indention on my Right breast, similar to what I hade found on the left!!! Went for a mamo and ultra sound. While doing the mamo, a clear yellow fluid came out of right breast, all came back negative. My surgeon still wanted to do a ductogram and sure enough, they found papilloma, and these can turn cancerous. Started Radiation Therapy 29 April 10. Am lucky to have found a great Radiologist closer to where I am living, only 22 miles one way. Everything was going great, but last week a couple times I noticded I was light headed after sitting up from the table. Friday, almost fell walking back to the dressing area, and then got naucious.. Had to sit and let things pass, found out this morning, this is normal, but had me worried....thinking, oh no, my brain!. Will run this past my Radiologist on Tuesday. In the mean time, I have decided to go back to FL and have the mastectomy on my right breast. I have an appt to see a surgeon at Moffitt Cancer Cntr, University of S. Florida, Tampa on 9 July 10. There is a Dr there also whose special interest is TN. For my husbands, sons and grandchildrens sake, I hope after the right mastectomy, I will have many years left.....
My regret is that I did not stick to my guns, I let my Dr's talk me out of having a bi-lateral mastectomy. Now instead of 1 operation, I will have to indure 3.
I pray to God for my recovery. God bless all you ladies and men who are battleling this disease!
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Hi Kad22,
My surgeon in FL said if I had a mastectomy there would be no Rads. However, I think it depends on how big your cancer is, if nodes involved and etc. Good luck
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Pamelajo,
I think the addition of Adriamycin is often dependant on nodal status... not always, but often. Many onc feel that the cardio-toxicity of this drug outweighs the benefits for early stage BC.
Your onc is right to be aggressive with a BC that has switched ER/PR status.
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Hi Paulding Mom,
What an absolutely wonderful quote from Erma Brombeck! I will remember that...
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Hi Jenn3
Are you aware that you can get one FREE wig from your local Cancer Society! I did not know that until after I bought mine..
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This is how my onc (very learned in TNBC with excellent credentials) explained the three choices she gave me for treatment. I had 1.2 IDC 5 cms below nipple - no nodes, no vascular.
1. T&C
2. ACT
3. TAC
Although the percentages between all three were minimal - she said the first treatment would be considered the lightest, but extremely good, out of the three. The second would have a bit more punch to it, but of course would depend on my heart echo tests, etc. The third, since I work everyday and raise my 15 yr. old grand-daughter, also a widow, she felt that might put me on my butt more so than the other two. All of them were fine for my age (62) and because I was totally healthy other than the breast cancer (healthy, ha! with breast cancer) - the choice would be mine. I chose middle of the road. It did kick my butt with every dang side effect known to man, but I only missed work on the day of my chemo for each round. It was hard, but I did. Now I just have to hope I made the right choice!
edited to add - went on to 6 weeks of rads and 5 booster - which, even with no nodes, she insisted on.
Linda
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Silverlady, I tried to contact you PM just before you headed out west here. Was it Dr. H who talked you out ot the BMx?
I really feel like she is giving me great care. I drive 280 miles round trip to see her.
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Meece
Yes, she, my surgeon, and a radiologist at UCLA westwood. I feel Dr H is great and did just fine with my treatment so far...just wish I would have had a B-laterial is all. Would have had one surgery instead of 3. But, everyone thought the cancer was smaller than it was and didn't think any nodes were involved. It grew fast in a month. I'm only going back to FL cause that is home and I have been out here since last Sep 10th, and Moffitt is a great cancer hospital also. By the way, what does PM mean. This is the first time I have been back to this sight since leaving FL.
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Private message.
Look in the dark blue line near the top of the page.
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I sent it to you on September 9th, 2009.
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