Lumpectomy Lounge....let's talk!

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  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    Molly, it never occurred to me there would be collateral issues. Yuck. That can make things quite miserable for you. Damn.

    HUGS!

  • Katzpjays
    Katzpjays Member Posts: 237
    edited April 2016

    Peggy - the price I quoted on Amazon was for the "thinning hair" version. With any luck the product you got will do the trick

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    Thanks, Sue! I'll keep it in mind if my purchase doesn't pan out.

    HUGS!

  • Peachy2
    Peachy2 Member Posts: 350
    edited April 2016

    Molly, that's just what the therapist recommended last night: coconut oil. She said that it's good, but would alternate it with a specific moisturizer product. She said that her preferred non-estrogen product is hyalogen. (You didn't type it out either and just used v. I like that abbreviation. ;-) )

  • Moondust
    Moondust Member Posts: 510
    edited April 2016

    Melancholy, it's great that you got a low Onco score! Hooray!!!

    Sue (Katzpjays), I wish yours would hurry up and get to your doctor!

    Peachy, thanks for the info on moisturizers. I will ask my MO about Estrace, which is a vaginal moisturizer that I had been using before Dx. I would be very leary of using it now, and don't know if I believe that none of the estrogen gets into the bloodstream. But I'll ask, because I'd like to use it. Did they give you a free purple vibrator? :)

    Sandy, I'm glad to hear your friend made it through without any difficulties.

    Peggy, my hair is already a little thin on top. Arimidex will probably make it worse, so let me know if you find something that actually works!

    Update on second opinion. Grrrr, it's the same old story when it comes to medical offices. My MO's office sent all the paperwork and my records to UCSF on the 20th. Today, after 2 days worth of phone calls and leaving messages, I learned that UCSF shows no record of my MO's second opinion request. The person I spoke with today at UCSF (whose name was Miracle) did a complete intake for me, which meant I had to give all my information over the phone when it was supposed to already be there on the paperwork. Then I left a msg with my MO's office saying that UCSF needed everything faxed again because they did not have it. I will be out of cell phone range all day tomorrow, so I hope my MO's office leaves me a message.

    Sherri, I think of you every time I make another phone call.

    My Dexascan showed osteopenia. I don't know what the actual score is because the nurse who called me did not say. Hopefully it is just below the normal limit. So I have to assume that either I am Vit D deficient despite spending time in the sun and taking a 2000 IU Vit D pill, or that I am calcium deficient despite consuming at least 150% of the daily calcium requirement in my yogurt, almond milk and numerous green veggies that I eat every day. I also get 100% of the daily potassium and magnesium requirement from my food. So I will start taking extra calcium citrate and I will get my Vit D levels tested. Oh, I also take a K2 pill which is supposed to help the calcium get into the bone. And I get a huge amount of weight bearing and resistance exercise. In fact the only time I ever sit down is to check posts and email, and driving in the car. Needless to say, I am bummed by these results but will work on the problem and try to reverse it.

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    Moondust, bummer on the Dexascan. With all that you are doing right for your bones, don't you wonder if genetics plays a big role? I also recall reading that it is important what you did in your teens and 20s, maybe more so than what you do now. I do know that I'm not doing a lot of the things you are and haven't been other than weightbearing exercises (lifting 200 lb DH for 4 years). I don't take calcium but I do take 3000 units Vit D3. And I'm also a definite sun person. I also am taking Fosamax (with no issues from it or Arimidex other than the thinning hair which I can't totally blame on it). I will let you know if my new shampoo helps.

    And that is crap about the lost everything between your MO and UCSF. I'd have been as happy as I know you are. NOT! Hopefully it can all get straightened out ASAP and get you in. Fingers crossed!

    HUGS!

  • iammags
    iammags Member Posts: 216
    edited April 2016

    Peggy, my friend with thinning hair sent me this email:

    "The hair think is call Hair Max but I don't know if it helps with hair loss from chemo. It's a low laser light therapy comb. I'm not sure that it is even helping for hair loss that is not related to chemo but she can look it up and see. There also is a thing called iGrow I think which is more like a helmet with lasers in it. It is more expensive. Again not sure if it helps with hair loss due to chemo."

    I know that you didn't have chemo but I left the paragraph exactly like she sent it. I have a feeling that this comb is more than pricey..but thought that I'd pass the info along.


  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    IamMags, Thanks for passing that along. From what little I understand, chemo hair loss is vastly different from that we get as we age (lack of estrogen? genetics?) and from our AIs (lack of estrogen? genetics?). I'm not usually into things like that comb. I just googled the Hair Max and my lower jaw hit the floor and bounced. Probably not going to happen. I would guess I'm not desperate. But interesting suggestions and it is nice to know there are a lot of options out there.

    HUGS!

  • Molly50
    Molly50 Member Posts: 3,773
    edited April 2016

    Moondust, sorry about the mix up with your second opinion and the osteopenia. It sounds like you are doing everything right. Maybe they will prescribe Prolia for you. It's supposed to help prevent recurrence in addition to strengthen bones. Melancholy, I have the same oncotype Dx score. No chemo for me. Katzpjs, I hope you get your score soon.

  • MJS1266
    MJS1266 Member Posts: 222
    edited April 2016

    Peggy,

    Go to Sally Beauty Supply, they have their own version Nutri-Ox which is much more reasonable.  I used it for a few months after chemo.  It made my scalp feel tingly and my hair did grow  back quite nicely.  Good Luck, MJS

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    MJS, good thought. I have the Vitamins Hair Loss Shampoo & Conditioner on order from Amazon. My only concern with it is the fragrance. Hopefully it isn't something I'm allergic to. I will make a note on the Sally Beauty version since you've actually used it. Thanks!

    HUGS!

  • Lovinggrouches
    Lovinggrouches Member Posts: 530
    edited April 2016

    melancholy, CONGRATS on your onco score!!!!!! Katz, hope yours is good!!!! I got great news today!!!! I'm HALF way through my rads!!!! I only have to do 20 with 5 of them boosts!!!!!!!!!! Yay!!!!!!!

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    YES! LovingGrouches, That's great news!!!

    HUGS!

  • Moondust
    Moondust Member Posts: 510
    edited April 2016

    Thanks, Molly and Peggy. First I will try to get a better Dexascan score by changing my supplements. If that doesn't work I will look into something like Prolia, although I'm not 100% sold on the benefits vs side effects. I don't even know what my blood Vitamin D level is, so I need to start by finding that out.

    LG, hooray for reaching the halfway point with rads!! You can see the light at the end of the tunnel now!


  • Brutersmom
    Brutersmom Member Posts: 563
    edited April 2016

    I used the Scalp Treatment and shampoo. After about a month I noticed that I had all these little short hairs sticking up. I have baby fine stick straight hair and lots of it. It is a blend of gray, brown and blond. I love the smell of the product.

  • molliefish
    molliefish Member Posts: 723
    edited April 2016

    6 months pfc check up today ladies. All is well. I have a mammogram in three weeks to get a baseline, otherwise, he says it appears normal, the swelling is normal for post radiation and back to regular physical exercise. Got me a new script for Tamoxifen too.


  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    BrutersMom, that certainly worked for you! Which one is that? I find the information on their website and Amazon very confusing. Their website is a POS for someone wanting information.

    HUGS!

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited April 2016

    Alice, my PCP explained to me that one reason I'm osteopenic (and that was pre-AI) was the meds I must take. Triamcinolone-nystatin (the ointment I was prescribed to relieve a yeast inflammation in the fold of my left breast even pre-bc) and the triamcinolone in Nasacort (which I must snort BID to keep my postnasal drip away and "ease the wheeze") leaches calcium from the bones. And proton pump inhibitors, aka PPIs (Prilosec, Nexium, Protonix, Prevacid & Dexilant), which I must take for GERD (and to prevent Barrett's esophagitis, which is pre-cancerous) inhibit the secretion of sufficient stomach acid to enable one to absorb the elemental calcium in food and calcium carbonate (TUMS, Os-Cal, Caltrate) and to a lesser extent calcium phosphate--so it doesn't get to the bones. Hence the need for Calcium citrate instead. You might ask your MO, GYN, endocrinologist or PCP whether any of your meds are keeping your bones from absorbing enough calcium.

    Interesting how different surgeons & cancer centers differ in their approach to bc treatments. Was leafing through the bc patient handbook my friend was given today (I was only given a cardboard folder, handouts and a link to download more stuff from my cancer center's site), and its advice was that "very large pendulous breasts" are a contraindication for lumpectomy because of adverse effects of radiation. (I suspect, though, that it was published before any results--even pre-release "bootleg" ones such as what my RO told me--of external APBI trials in older women with small Stage IA Luminal A tumors--were known. I think it assumes whole-breast radiation, which could be problematic for a supersize breast, especially in women with lung problems and/or the left breast, with the area over the heart in the irradiation field. I am now wondering if the next surgery I should consider is neither cataract nor total hip replacement but rather bilateral reduction. (I would, of course, wait to see what size my R breast finally is once the radiation swelling and seroma totally subside--the fibrosis is just about gone, and the bulge over the incision is also barely discernible).

    Also, apparently my surgeon is an outlier in that she doesn't think I need to follow up with a mammo and office visit (with her NP) until Aug., the one-year anniversary of that telltale screening mammo that started my bc ball rolling. 3-6 months is the norm. And my RO has released me permanently. Only my MO wants to see me every 6 mo.

    One thing is for sure: if I do get either a local recurrence or new primary in my right breast--precluding lx because there's bound to be some overlap of radiation field with the part already irradiated--along with a mx & immediate flap recon (or prosthesis) on the right I will opt for a reduction on the left--to a DD or even a D so that I would be able to buy mx camis, bras and/or prostheses, which don't come any larger than that. Bob says he will stand by whatever decision I make--but I should work first on shedding some of my spare tire for balance and metabolic health. (Right now, it's only my rack that keeps me from seeing my toes--I'd like to make sure that my gut doesn't do the same).

    My friend is going to be released tomorrow--and it looks like with only the L drain in place. The R one has stopped draining and will be pulled. Social Services. is having trouble trying to find Meals on Wheels which can deliver way out in Minooka--but she's considering trying Blue Apron or another pre-measured DIY meal delivery service. She's willing to try cooking--back when she was on Seattle Sutton, the meals were so bland she found herself jazzing them up with extra herbs, spices and veggies. Medicare will provide daily nurse visits for wound care, but she isn't sure she can get--or even wants--in-home care. She's handling her arm mobility exercises like a champ!

  • FitMom3
    FitMom3 Member Posts: 1
    edited April 2016

    I had my lumpectomy last week. I am trying to see where to post, but Im having hard time. I recieved my OncoDx results today. Im wanting to reach out to other women as I am so new to being diagnosed and to understand everything a bit better. I have been reading "Breast Book" by Susan Love the last few weeks. I don't meet again with both medical and radiation oncologist till May 11th to discuss my treatment plan. My OncoDx score was 27, I am a stage 1, grade 3. Im trying to learn more about chemo since it sounds like it will be my own decision. I am 36 years old. Anyone out there with their own recommendations or thoughts I would greatly appreciate.

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited April 2016

    Peachy- thanks for sharing what you learned and thanks to Molly for the "v" abbreviation.

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited April 2016

    Molliefish- so glad for you that your report was a good one!!

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    MollieFish good news!

    Sandy, glad to hear the news on your friend.

    HUGS!

  • PontiacPeggy
    PontiacPeggy Member Posts: 6,778
    edited April 2016

    FitMom3, Welcome. I think you've found the right place. We are a broad group all starting out with lumpectomies, some going on to mastectomies, some having chemo, some not. So stay here for awhile and we'll try answer your questions. If nothing else we'll provide comfort and support. Dr Love's book is the best (hopefully you have the edition that came out last fall with the latest information). You will find that there is no one way to treat BC. Everyone is different and every MO and RO is different. So even with an identical dx and Oncotype, two people could have different treatment paths. You'll want to write down all your questions (key word: write) for your appointment with your MO. I'm sure the gals will have suggestions for questions you will want answered. Take care.

    HUGS!

  • Katzpjays
    Katzpjays Member Posts: 237
    edited April 2016

    Lovinggrouches - that is great news

  • LovesToFly
    LovesToFly Member Posts: 1,133
    edited April 2016

    Tara I just finished chemo last week. I am 42 years old, and it looks like we had a similar diagnosis. I did not do oncotype testing, but I had a small er+ (and pr+ in my case) tumour, one positive lymph node.

    It is not a given that you will do chemo, however given that you had a positive lymph node and your oncotype is not "low", and your tumour was grade 3, I think that it is good to be preparing for it.

    I was obviously very upset to discover that I would need chemo, but I have to say it was not as horrible as I'd anticipated. That's not to say it was easy because it wasn't, but it wasn't horrible either. I actually worked throughout, taking off one week out of every three week cycle. I had about 2-3 really bad days every cycle, and three or four kind of yukky days. I usually had almost 2 full weeks where I felt pretty good. Oncologists want people to tolerate it well, there are a lot of great medications to manage side effects, and it's important to stay on top of side effects and let your oncologist or Chemo Clinic know if what you're taking is not working, because there are usually other things to try.

    I assume by your screenname and you are quite active, I am as well, unfortunately my fitness did take a hit…however I kept up my fit bit steps almost every day, and being able to put in a bit of strength training and yoga here and there, moreso at the beginning then at the end. As a fit and active young woman, I was very worried about waking, as I had heard that a lot of women gain 20 to 30 pounds during chemo. I gained 3 pounds (and they are already gone).

    Obviously losing my hair was very hard, I'm starting to grow it back now, and cannot wait to have it all back. Some people do use cold caps these days to keep their hair, I chose not to but it might be something to explore

    I don't know exactly what you want to know, I'm just trying to give some of the information that I would've liked to have heard. Feel free to ask any specific questions. Your experience may not be as good as mine, but I hope it is, and if you look on the chemo boards you will see a lot of people have similar experiences to mine. Some bad days, but lots of good days! Few of us found it as awful as we had thought it would be.

    I have 2 kids (7 and 13) and have been able to keep up with them well enough.

    This is a great group. My lumpectomy was in November and complication free (so I barely talk about it here...but this group is still my true home here.

    Things of been crazy at work and home so I haven't caught many posts, but I'm glad for any good news, I'm sorry for anyone that's going through tough times right now. Healing vibes and hugs to all.

  • HappyHammer
    HappyHammer Member Posts: 1,247
    edited April 2016

    Hey, Moondust- my doc said go with 5000iu of vit D, daily- and, sometimes, I take more....sort of depends on how much comes out of the bottle. :)

  • Brutersmom
    Brutersmom Member Posts: 563
    edited April 2016

    Peggy ##2 is for fine hair.

  • Moondust
    Moondust Member Posts: 510
    edited April 2016

    Fitmom, if your MO says you have to make the decision, then I would ask for a second opinion at a big university. We are not qualified to make medical decisions that will affect the entire rest of our lives! And it is not fair for a doctor to tell you that you must decide. The doctor needs to give an opinion one way or the other! If your doctor will not give you a firm opinion, then you definitely need a second opinion.

    I am in a similar situation with an Onco score of 26. (Anyone who already knows my story and its details, please skip this!). At the meeting with my MO, she wanted me to decide and I said I would skip chemo. But as I moved on to radiation I changed my mind and strongly felt I needed to have chemo. It was because of all the researching I continued to do, which led me to see that PR- cancer is a much greater recurrence risk than strongly PR+ cancer. My ER% is 80, which is also lower ER than many tumors. Both of those factors influence how well the drugs like tamoxifen or arimidex will work to keep cancer from growing. I am Grade 1 with 0 nodes positive, and I still want to have chemo. After I finished radiation I met with my MO and she told me she did not want to give me chemo. She is sending me out for a second opinion before she will agree to it. When I was first diagnosed I really really did not want chemo. It was too scary. But now I know I'll make it through and it will reduce my recurrence risk. If I have a recurrence, at least I will know I did everything possible to prevent it.

    Please keep us posted about what your MO says. My guess is that considering your age, grade, one positive node and PR-, your MO will recommend chemo.

  • Moondust
    Moondust Member Posts: 510
    edited April 2016

    HH, thanks for the Vit D info! My pills are 2000 so I'll start taking two until I can get some 5000. I'll go gobble an extra right now!

  • Katzpjays
    Katzpjays Member Posts: 237
    edited April 2016

    Fitmom3 - Welcome to the site. This particular thread has answered so many of my questions and offered great suggestions. Certainly waiting for all the pieces of your pathology required to determine a finaltreatment plan can be hard. You have friends here who have been down the same path.

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