Stage 2 Sisters Club
Comments
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headeast - i gained 25lbs since all this started. I believe tamoxifen is part to blame but getting set back with repeat surgery doesn't help. Just started serious calorie count and back to the gym but i'm 10 days from my full hysto.... Set back again. Hoping I won't be out if the gym for more than a week - down 5lbs and want more gone before we go on our cruise.
Anyone also add a hysto on post bmx? Just curious how recovery was??? Hugs to all!!
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Mjsgumbas - noticed you had your BMX the day after I had mine. Wishing we had met at hospital, lol! Reading about your upcoming surgery made me wonder what percentage of the estrogen women produce comes from that source? I am managing Arimidex well but my skin, which wasn't great skin to begin with, has taken a hit. Soooo dry! New wrinkles seem to be coming in at fast speed. Is this happening to you and others? Or maybe chemo and the whole C-thing accelerated my aging process? I miss my prettier self.
Love, Nisa
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NisaVilla - I think chemo ages us. I was quite surprised by the difference nine months after finishing and spoke to my oncologist about it. She told me a bit regretfully that in her experience women who looked younger than their ages, as I had, looked their ages after chemo. Sigh.
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Nisa - We could've been bunk mates - lol! Not sure what percentages are of estrogen from the ovaries, but I have an existing cyst, that was diagnosed right at the time my of BC. Back at the end of March it was 9cm and we scheduled surgery and then surprise - mamo came back, need more pix, more pix turned into ultrasound & biopsy same day... and we all know the rest of the story... so the cyst went on the back burner. This isn't my 1st cyst. I've had surgery on that same ovary when I was 17 for a cyst that ruptured.
Since having both my kids and then 5 yrs ago pre-cervical cancer cells, I've been begging for a hysto but insurance wouldn't ok it and Dr really didn't want to do it because I was too young.!!!!
Now - get it all out!!!!! I don't want to worry or think about it any more!!!!
Have a family history of "some kind of female cancer" so I really don't want to think about it anymore!Tamoxifen has made my skin noticably more dry also - but it's hard to tell if it's the pills or the extreme winter weather we are having in Chicago!!!
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mjsgumbas - i really want my ovaries out too, but my insurance won't pay for it. My brac test was negative. I just want to be in menopause so I can take arimidex; I've read it's better for ILC. I will have to be on tamoxifen for a year then if no period, arimidex.
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How can I post a new thread?
Thanks
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Srh242 - i think (not 100% certain) you first choose a forum (this thread is under Stage II cancer) and then follow the link to start a new one. Or contact the mods who are so nice and helpful!
I am sorry, but not surprised, to hear that insurance keeps women from having what would help and let you sleep at night. Have you considered a teaching hospital? Wondering if they would offer another option?
Yes, dryness is a big deal for us in CA. I'm feeling it in my skin and even in my growing hair. Need to research moisturizers that won't activate estrogen production.
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mjsgumbas,I had an oopherectomy via laparoscopic surgery. I didn't have a full hysterectomy but I think they can do that laparoscopic as well but I'm not sure if they can with your cyst. It definitely wasn't as bad as bmx but it still took time to heal. I was not allowed to work for 2 weeks. I only have 2 very small visible scars on my hips. I know what you mean about the setback. It seems like as soon as you start feeling better and starting to improve another surgery or procedure comes that forces you to stop and then you have to restart again. The longest stretch I had was 4 months when I was letting the TE "sit". I'm 2 months post xchange and am starting again to excercise. Oh- watch out for those hormone changes. The imbalance is immediate. The hot flashes were tolerable but it was the dryness that returned with a vengeance for me.
Nisa- have you heard of lindi skin? They make skin products for people who have gone or is going thru chemo. I think the cure diva site on breastcancer.org sells them. They have a great face serum and eye gel that I use. I use other moisturizers (origins, neutrogena, loreal) depending on how dry it is or if I need sunscreen and my skin has recovered nicely. I even get compliments on my skin from people who didn't know I went thru chemo. Now if only I could get my hair to recover like that...
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Good morning all!
Just checking in. Its now been 1 month since last Rad treatment and Alice is back to work again full time and doing very well. She is on Arimidex and no side effects thank God! She has me going all over making up for the lost time this past summer! I am very happy and hopeful that she will be well. On the other hand my cousin who is more like a brother to me was diagnosed with Colon cancer with mets to his liver. He started chemo yesterday at the same place my wife did hers. I will go with him for his next round. It has brought back those feelings again for me. I hate this disease! I do know we are on the verge of some very good treatments coming soon. My neighbor is a PHD for Merck and she tells me they have a "game changer" for cancer treatment they are working on and will be announced soon. So we continue to be positive!
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So sorry about your cousin. Colon cancer is tough. According to my doctor, BC survivors should have a colonoscopy every 5 years, so if that hasn't been mentioned to you, be sure to ask about it.
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Mely19 - thanks for the info. Tamoxifen started the hot flashes, which have been tolerable. MO said to expect for them to be worse after hysto... it is what it is, just want this all behind me and get back to feeling like myself
whatever that was lol. Quickly approaching the 1 year mark too!!!!JDB53 - sorry to hear about your cousin, especially when your wife is bouncing back - not good timing. But maybe he can see there is light at the end of the tunnel with how your wife is doing
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For those with dry skin - I have been enjoying using "Say Yes to Carrots" skin products as they do not have paragons or sulphates in them - chemicals I have been advised to avoid. The products are widely available at chain drugstores and at Target. I love the rich body butter for massaging into my radiated breast skin each evening. If I don't creme the skin regularly I can see a distinct change in the appearance of it and after a few days in the texture of it. At one point before I began this regimen, my skin was looking and feeling like cardboard. A radiation doctor got alarmed and told me to be vigilant about moisturizing.
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JDB, I am happy to hear your wife is doing so well. So sorry about your cousin.
I have also heard from friends in the pharmaceutical industry that there have been trials on a new way of treating cancer. I think they are doing one of these trials at Dana Farber. It has to do with increasing a persons immune system to fight cancer itself. This means each persons chemical makeup must be analyzed to make treatment as specific as possible. So a patient will not be infused with chemo type drugs, they will be infused with an alternate immune system. Very $$$$$$$ and interesting.
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Hello all!
smrlvr, interesting news on the new drugs. I have heard that new treatments will be much more targeted than the old ones...and hopefully even more effective.
Hortense, thanks for the moisturizer heads-up. Will look for it.
mjsgumbas, time is marching on! hang in there with those SEs. You are tough, you can do it.
JDB53, so happy to hear your wife is doing so well! Did she have any long term effects at all after rads? when/how will she reconstruct?
As for me...11th Taxol on the books! Hooray! One to go!
Have a great day everybody!
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Hello warrior70,
I am happy to say that she had no major reaction to the rads during and after other than some itching and some red coloring of the radiated area which was resolved with cremes recommended by folks here and her doctors. Her skin now looks normal and her hair is growing, almost 1 inch in length. She has an expander in and the radiation folks were great and working with her plastic surgeon insofar as making sure they did not damage the scar line. She will have the expander removed for the permanent implant but we don't have a date for that yet. One more Taxol to go, that's great! I remember saying that your diagnosis was very similar to my wife's. Are you doing rads, was that recommended to you?
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JDB53: so glad you and your wife are moving along and hopefully getting back to done normalcy. It is such a ride that we all go on during active treatment. So good that her skin held up do well;) if able, please pass along the name of the lotions she used.
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Thanks Girlstrong!
She used Lubriderm Unscented after each treatment. But she said dont use anything before treatment as it will cause some issues. Just use it after treatment. She also used Cortizone for itching.
Michigan eh??? My sister in law lives in East Lansing and works at Michigan State!
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JDB53: what a small world!! My brother in law works at Michigan State and I used to live in East Lansing. Go State!!! Thanks for the skin info
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Hi Stage II Girls
I am stage II a .finished 4 rounds of CT. i'll have my reconstruction Feb 9 2014. QUESTION, How many of you chose nipple sparing mastectomy?I did and I am a bit worried?any advice?or idea or anything??? the chances are higher when we do nipple sparing.my tumor was really deep at 12 o'clock and 2 .2 cm .
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Ask your oncologist. I would hope they would have told you that it wasn't an option if there were any higher risk in it for you.
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Hi everyone! Had an awesome day today - finally went for a bra fitting and bought a few real bras! So awesome to feel like a woman again - and i went up 2 cup sizes!!! Great day!
Hugs to all!!!
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Setizand, I had a uni-lateral mastectomy with no reconstruction. All I know is that my surgeon told me that the risk with nipple-sparing is that the nipple is breast tissue, so you are leaving breast tissue on the cancer- afftected breast. But lots of women are doing it, so there must be a way to minimize risk. Good luck with your tough decision.
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Hi JDB53, I will be doing rads starting February; I will need to get another fill in my TEs before I start. It looks like I will 'only' need 25 sessions/no boosts, so I should be done by the end of March...woohoo! I am hoping for good results so I can get exchanged fairly quickly. We are very similar in terms of DX, except I am Grade 3 *shudder*. Oh well, I will make the best of it...try to turn chicken shit into chicken salad, as the saying goes.
mjsgumbas, when I am done with the recon, I am SO gonna have a little lingerie shopping spree...enjoy your new bras.
girlstrong, I like your avatar
Have a great weekend everybody!
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warrior70 hope your remainder of treatments go smoothly. The people at Soma were the best - if there is one in your area. Very sympathetic & knowledgeable to our special circumstances
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Thanks mjsgumbas...I'll look for Soma online.
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Hi everyone. I'm new to the site. I was stage IIa grade 3 had bmx dec. 3rd and will be starting chemo early feb. Thought I would be able to skip the chemo, but because of my age, the grade and negative hormone rec I'll be joining the chemo club.
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Hi JDB53, Thrilled that your wife is doing well.
Something I want to share with you re: your cousin. I was at a dinner co-hosted by the nonprofit I work for (brain cancer advocacy and support) and Foundation Medicine. So got to hear the state of the science from the horse's mouth. The reason this is important is that the Foundation One test is available for anyone who requests it. Really slick, as it searches one's genomic profile (genomic sequencing) for mutations that are known to cause cancer. The back end is even slicker. It will identify therapies known to target these specific mutations and has links to all the supporting literature. This includes clinical trials and off-label uses.
I think it would be an excellent idea for your cousin to request this. Because with liver mets, you want to explore all options from the getgo.
Cost is comparable to Oncotype.
This is a major breakthrough as now you don't have to go to a major cancer center to have this profiling done. Your surgeon can request it, and the pathology lab forwards the tissue on to these folks.
More on their website, including one of the slickest videos I have ever seen. Good luck. So glad your wife is doing just fine. I knew she would. A major relief once the hammering is over. - Claire
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Good morning Jujubee. I am sorry about your recent diagnosis. I hope you are recovering well from BMX and the shock of it all. Chemo is never fun but it often cures cancer. I couldn't finish my chemo because of side effects but most people do, and most people handle SEs very well. You will find lots of support and good information here. There is a Triple Negative forum as well. Sending you a hug!
Nisa
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Happy Sunday and thanks everyone for suggestions on moisturizers. Will be looking into that today. Warrior, yes, shopping for pretty bras has been therapy, even for a non-shopper like myself. Joe: wonderful to read about your wife but so sorry about your cousin. Just when you thought dealing with cancer was behind you. You must be feeling at risk of becoming the next victim. I agree that it will be helpful to him to see how your wife navigated the whole thing. Although we all know that stage IV is an even more challenging ball game. Colon cancer killed my mom when she was 44, so I hate that cancer more than any other. Mjsgumbas, 2 sizes up girl?! You are now a celebrity
. Setizand, they don't save your nipples unless they are certain they are cancer free. Read again the final biopsy report from the surgery, there should be info about it. Good luck!0 -
jujubee83 - Welcome. I love your User Name because that is my nickname for my niece, Juliana. Anyway, sorry you had to join the club. =(
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