Starting Chemo September 2015; join us!
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shopgal
I see you are from Pa. Which teaching hospital are you going to?
Rosieo
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Thomas Jefferson university hospital. Luv my team. Are you in pa?
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shopgal
Yes and I was thinking about Thomas Jefferson. It is in Philadelphia, right?
I am about 2 hours away and really didn't know how getting the chemo treatments would effect my driving back and forth. All but for that I would love to be there. I know it is a great hospital. Thanks for your reply
Rosieo
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Hopefully I'm not too late to join the poop jokes?
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is is in philly. That and Penn are the top hospitals. I live about an hour away. A lot of patients there travel in from jersey or in pa for treatment.
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Anyone ever had a guinea pig?? Missy in my avatar is a great poopologist! I mean you vacuum her mansion and it just comes out like an automated machine gun soon after! When I was in the hospital for 5 days with infection, my friend helped with her. She was like omg. How on earth can something so small put out so much??? Yeah. That's a big side effect of having Mooshy my guinea pig..
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Southern - I really wish I could do lumpectomy. The idea of such a big surgery is making me nervous.
ShopGal - Yes. I'll be deciding between 1x and 2x. I'm feeling very fortunate that they are presenting my case too. It makes me feel better to have more information and opinions rather than just the one from my initial breast surgeon. I'm at a major teaching hospital and cancer center too!
Skittle - Now that the double mastectomy was recommended, I'm starting to lean that way for the same reasons you said. The surgeon said that if I do the double the likelihood that I will have an occurrence on the other side is reduced down to 5%.
I have DDD's and I was hoping that even if I did a lx I wanted a reduction on the other side. The surgeon recommended doing a "wise pattern" surgery, then at the end of the day I'd have a 2x and can make the reconstruction any size I want.
I'm finding it scary to start thinking about surgery. It's really been on my mind even though it's unlikely to happen until late January/early February.
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So much going on here, can't keep up with it all, but I will pipe in to say cute wigs to both SoC and Grey! However, Southern, I am with you on itching, haven't gotten a wig but can't even deal with the itching from the halos. I've relied on scarves and hats...I will say that yes, I have hair, about the same amount as you showed in your pic, maybe a little tiny bit more at the base of the scalp (which is nice, because it peaks out below the hats, and I can pretend that I don't look 'cancer-patient like.' Yeah right. It isn't that much hair. And the disappearing eyebrows give me away.) I was also thinking of breaking down and getting an eyebrow pencil.
and I am saying 'relied' on hats and caps because hopefully it will start growing again before too long, because YESTERDAY WAS MY LAST CHEMO!!! WOOHOO!!!!
It was not without drama: I had decided I wanted to do something to celebrate, and since I knew I'd be tired and steroid buzzed (a bad combination) after, hubby and I decided to hit our favorite restaurant in chemo city (not in PA, but I am also doing hour long drives each way for chemo....not a big deal with infusion every three weeks, but would be if I had weekly chemo. So to answer the question on that issue: distance is a factor. For the same reason, i am getting neupogen shots at home-hubby gives them to me- but I totally get where Artista and others are coming from about the advantages of going in for the shot; I'd have preferred that if I lived close by.
But I digress. Lunch: We went to a Hunan Chinese restaurant, known for spicy food, really close to MOs office and too far from home for us to go regularly, that we both love. To celebrate, I ordered my very, very favorite Dan Dan Noodles. Addictive, lovely bowl of perfect noodles in a heavy broth with chiles, and garlic and all kinds of good stuff, and because it is hot and heavy and yet a bit sweet I can actually taste it! It was great, especially since winter is finally coming here and it was a cold, breezy, on-and-off rain showers type of day.
And chemo was fine, non eventful. almost anti-climatic. Until about an hour after I got home. Now I know what you ladies mean by the 'BIG D'. I barely (one seconds to spare) made it to the bathroom and got my pants down the first time. On top of everything else it burned, because, you know, chilis...I guess I can join the scatalogical club now...
Restless night up and down, but feeling better this am. Not eating much, and it will be bland foods, all day.
I'll be hanging out, hopefully reporting back that it gets better. Sending a big salute and HUGS to all!
xoxox
Octogirl
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Bilateral mastectomy when BC is only in one breast: Just my 2 cents: In Finland in the public center I was not given the choice to have both breasts off like I wanted, because the other breast was clean by mammogram, ultrasound, and MRI --- surgeons said no medical indication.Having it off after chemo as I had planned is pretty much impossible now --- I'm already struggling with painful lymphedema in my chest wall and dominant arm and hand. The very real possibility that further surgery on my chest might worsen or spread the lymphedema is a risk I'm not willing to take. I feel like I'm stuck with a ticking time bomb.
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WOW OCTOGIRL! Super congrats on making it throughyour LAST CHEMO!!!
Even though you did celebrate with The Big D
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Wow Octo, congrats on your last chemo! And do keep in touch in here. Hope it's all uphill now for you! xo
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I had a double mastectomy. I was neg for the BRACA 1/2 gene but had some other mutation they will list on their "noted" files for the future. Insurance covered my double. I did have a suspicious spot in my non-cancerous breast (right) and did not get a biopsy, I wanted both of them off. My guess the reason why ins covered my double is because of my diagnosis age @ 36.
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Insurance should cover what you want. There was nothing really noted in my right breast but I had that removed as well. I could not take the always wondering if this thing I feel in it is cancer back again, no matter how low the odds were given to me. My left breast tumor was 7 cm. Until sx it went from biopsy showing 2 cm to MRI 4 cm to sx 7 cm. So a lot of it was hidden from the tests. I highly recommend double mxs for those women with large and dense breasts as it seems from what I've been reading here, larger amounts are found on the table than previously thought.
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Artista - agreed I had dense breasts (smaller but dense) and mine was a multi-folical tumor. so they were right next to each other 1.9 cm & 2.1 cm or something like that. Scares the hell out of me that there were 2 and a possible 3rd.
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tessu Good one. As long as we can laugh at our trials I think it makes the trail a little easier.
edwsmom I had a large chest and wanted to go down in size as well. As you can see from my stats I actually had Bilateral BC and the Palb2 mutation of and 42 . They could only really do a lumpectomy on one breast as the other was full of DCIS and a HR+ tumor. That is how I ended up with a BMX. In the US you are allowed to have both sides off if you want regardless and insurance is required to cover it. I met with a few Plastic surgeons until I found one that would do what I wanted nipples aereola etc. Its ok to get a lot of communication. If you keep the other breast you will still have feeling in that one side which might appeal to you. Its harder to make a matching pair but a good PS can do it. For me I just had them take extra skin out of the skin sparing mastectomy and so my breasts went from DDD to probably a D. My PS is more conservative about what implants he will use I know women who have far bigger than he will go up to. I think mine might be 650cc but I will have to ask next time I am in. Also I didn't want any boobage under my arms. I was very specific about that. I want it all up front. I don't care if they look like porno. That said my plastic surgeon just keeps telling me which implant he can put in that he thinks will look nice. We go back and forth about it. I suspect I don't get as much say in that as I would like because I will be out on the table and have to trust him. Which I do.
A friend gave me advice. If a doctor is telling you its not possible what they are really telling you is it is not their specialty. Keep looking.
Grey I love your wig. It is sassy and youthful. I might get one like this for when I finish Chemo. I need a little pep for winter as my hair grows slowly.
southern. Really you thought that had too much hair? I like it. Is it heavy on your head?
FWIW My avatar picture is with my Wig. It looks just like my hair for good or bad. Highlights and all. I wear it about one hour each day and that is about all I can handle. Its usually when I am in crowds or need to be around people that don't know about my diagnosis. My wig itched terribly for a long time. I couldn't stand to put a cap on underneath it because of the hotflashes. Now I am very bald so It slips a tiny bit and I have to use that roll on glue if I am going to be out for a long time.
It sounds like some of you gals live close enough that when Chemo ends you could meet for a lunch between your homes. I think that would be awesome to put a face to the typing. I am clear out in potato Idaho But I think of you gals and hope that you get your treatments in before the bad snow in the winter.
OH and Eyebrows. I purchased this powder brush Eyebrow applicator that fills in nicely. Search for "Eyebrow powder" Far less sever than the pencil. My eyelashes are about gone but still a few there. Not enough for Mascara.
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I had a SX in August, and the tumor size increased to 5.5 cm, buying me a ticket to stage III. It was basically my entire breast before they found it, and even doctors looking at my ultrasounds and MRIs couldn't detect it by feel.Because it was a Grade 1 ILC, they think it's been growing for years. Undetected by several mammograms. Adding very dense tissue, an unknown BRCA2 mutation, and a couple of suspicious spots on the good side (biopsies OK, but my mom had a ovary biopsy that totally missed a sizable tumor, so I have trust issues there), I'm leaning hard towards removing the remaining breast at reconstruction. Which I'm told won't be until six months after radiation finishes mid-March. I also don't want to lose any more lymph nodes.
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In fact, I just remembered. Insurance will cover anything you do to your breasts in the future. The dx is cancer so if you decide later on you want implant or remove the other, etc, they should cover it because it goes back to the cancer dx. I asked my ps let's say I decide I don't like the size of my breasts anymore and want it changed if they'd cover it and they said yes, ties it to the cancer dx.
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Isn't it always the way? I finally get myself mentally ready for chemo and it may be cancelled because I had blood in my urine this weekend? Not that I would enjoy all the heck that goes on with chemo but I am just trying to be positive and get it over with!0 -
El_Tigre I getcha on the finding of two right next to eachother. They actually found the tumors in my right breast at surgery. The imaging missed it. How are things going with keeping busy? I started doing some Mandela art and I may sew something for Christmas to keep my mind of things. Did I report back that the dietician said COQ10 yes after Chemo but not during. She says the studies of what interferes with Chemo are weak and not reliable. I have high cholesterol and am going on Arimidex so she is going to print some stuff for me once I am done.
Grey: wanted to mention something if its ok. One of the hardest things I have experienced in this Cancer journey is allowing compassion and help to come into my life from my others. Its obvious that you are very independent. I am too. My counselor talked to me about this a lot. she explained that we are really depriving the people in our life by shutting them out during our treatments. For your dear friend who helped you with the Wig I am sure you gave her a hug and thanks. Its hard on the pride but I am sure she felt so good inside that she could help in a small way.
" Taking care of your treatments and practicing self care is being useful!"
My counselor talks to me about this whenever I go in and see her. I am a very independent, motivated, person. My contract for work ended right before I was diagnosed. I didn't want to seek out something new in the middle of this so I took a break. That has been a mixed situation. I feel like I am in this time void where I just want to be normal and useful. This treatment just seems to go on and on. I feel like so many of my coping mechanisms are not working right. I am not exercising much because I am dog tired. My friends are a bit worn out with this Cancer deal so I try to see them and I am positive as I can be when I do see them. My son is struggling at school and he has wonderful teachers but his behavior is not helping the situation. I keep a brave face on for my kids and my husband.
I try to remind myself each day that I am useful, I am worth this fight and I have something to offer this world that merits the measure of this challenge ahead of me.
Yahoo for the ladies finishing up Chemo. Keep posting It will be good to hear how it feels to be on the other side of this. The surgery decisions and Rads, Having food taste good again! Pooping again! Growing Hair! All the little things we are all going to relish when we get to the other side of this.
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Grey- Hang in there. I've been delayed so many times that I really belong in the Nov start thread. Best to take care of things as they come up before doing chemo or it'll be that much worse to deal with on top. xo
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exercise - Scary stuff. They found a long laundry list of stuff in my right breast after surgery, non cancerous but the stuff they read off sounded just as scary. Figures on the imaging missing it. I know the MRI caught a glimpse of something going on my my right breast that the mammo (ouch) did not.
I'm good, keeping busy at work. My Mondays after treatment (every other Friday) working at home are nice and quiet. I've been doing that mindful mediation, I like it. I think it's helping a great deal. I feel more relaxed more so than my hubby. i started with 5 min twice a day and now I'm 10 min twice a day. Thank you for recommending that
Tonight they have a survivor's meeting that I plan to attend. It's my first and I'm very nervous but I may also be very tired since it's not until tonight.
High Cholesterol, yup just got tested for work for a medical discount program, it's lower than my last year's numbers but the bad LDL is still high. But get this, after filling out our medical assessment online to get a health score, I scored 98/100 even after answering the Cancer question with a yes. How messed up it that?
yeah that's the consensus with C0Q10. I'm definitely going to go on a rampage with supplements after chemo/rads!
I think it was smart to take a break. My downfall is not taking very good care of myself. I understand the feeling of wanting to be normal, but then you need to be selfish in this too.
Contract or not I think we all feel like we've stepped in a void. I feel that when I see people's vacation postings on FB or how their life is so great etc....
You're strong Exercise! Energy will return, friends will come around, and you will beat this $hit!
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Octogrl - Congrats!!! hahah you're brave, I love spicy foods but it doesn't love me.
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El_Tigre - Good luck at your meeting tonight. I have mine tomorrow night. I love my warrior sisters. Most of them are past treatment, but there are some getting ready for reconstruction and everyone is great about answering questions and being supportive. My group is mostly women diagnosed before 40, so a lot of them know the difficulties of having young kids and going through treatment. This month we have a hockey night (also a fundraiser) and a painting party. So I get a couple extra opportunities to hang out with them. Usually we just meet once a month.
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Hi everyone! I been lurking around your group and you all seem like fun. I joined the October group but they aren't very chatty. I feel invisible when I post something there. So I hope you don't mind me tagging along. Thanks in advance lol.
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Skittlegirl - Thanks!
Yours sounds like a cool group!
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Southern and Exercise - Great wig looks on you both!
Southern - I am neoadjuvant. My surgeon says my 7mm tumor earned me an express ticket to mastectomy. The tumor is smaller now post-A/C, but I do not expect surgeon's opinion to change re: lumpectomy vs mastectomy. Despite having a whackin'-big IIB tumor, MRI detected nothing in the other breast or lymph nodes. I would be willing to go double-mastectomy if there is even a slight argument for that.
On that topic, edwsmom: assuming my 12-weekly Taxol treatments don't get cut short, my mastectomy will be no sooner than late March. I'm putting it mostly out of my mind until January since earlier surgery discussions wouldn't be based on the impact of the Taxol treatment (for better or for worse).
Grey - ACK!! Big bummer that you are delayed. I literally danced into the waiting room after being cleared for Round 4 A/C last week. Although I was dreading the red dragon, once I'd gotten to the day I just wanted it OVER. Hang in there. Our roads are long.
Tessu - I'm so sorry your insurance won't pay for double. That stinks. Shibe for-the-win, though. Poop jokes are ever-green here ; )
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Welcome jclc83! I started A/C chemo two weeks before you, so we're close. This is an awesome group of brave and supportive ladies.
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Hey y'all! I finally got out of the house today. Woohoo! Now I'm beat dog tired. So much to do before my DIL and new grandson get here Monday.
I caught up on the posts. The ladies in this group are some of the strongest I've seen in my life. Survivors every single one! I wish we all had group together in the real world.
It's cold and rainy. I was thinking how fast winter came while I was wandering through the Christmas stuff at Target. Time flies.
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octo congrats on being done! Good luck with rads. Some of us will be close to joining you soon enough.
Edwsmom I am planning to do a reduction after rads I did want a reduction with the reexcision after surgeon told me I had positive margins after 1st lumpectomy due to sneaky triple neg cells in the margins. But my surgeon told me they wanted to get clean margins. If I hadn't gotten clean margins I would have gone straight to bmx.
I wish tomorrow was my last. I don't want to go for taxol #2. I know I will be done in a month on dec 9th but it still sucks. My 3rd is the day before thanksgiving.
I've kept myself super busy today trying to not think about tomorrow. Talk about chemoanxiety. That's gotta be a real thing right? It's a rainy cold day near me and I just wanted a nap but felt I needed to clean out my closets to donate to goodwill. I did feel better doing it but now am exhausted. Lazy boy soft sofa here I come.
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