Stage 2 Sisters Club
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Jaymeb--
Sorry it took me so long to get back to you. Been sooo busy this week w drs appts and work..
I did meet with my oncologist. He's with Jefferson Hospital at Abingdon. I like him very much. He's very knowledgeable..I can tell, because he was citing recent studies about certain things. His nurse navigator also seems great..really nice.
So--as far as chemo goes--here's the thing. He said that if there's no lymph node involvement, I can escape chemo. I made it clear I wasn't excited about doing chemo and that I tend to get drug reactions/allergies to practically everything.
He said that from looking at my MRI, he thinks my nodes will be clear. He said MRIs are usu good about showing lymph node involvement--I had no idea about this.
He said that if my breast surgeon doesn't order an Oncotype test on my tumor, he will. He says if it's under 25, I won't need chemo. He said with tamoxifen, I'm cutting my risk of recurrence 50 pct and chemo would knock it down another 20, if there's lymph node involvement.
I also met with my new plastic surgeon--
He seems a bit old school. He was really kind of pushing tissue expanders instead of an immediate implant reconstruction. My oncologist also thinks I can probably escape radiation but if I DO radiation, it would be targeted at the lymph nodes (if there's lymph involvement) so he doesn't think it would be a problem to get an immediate implant.
I think the oncologist sold me on getting an immediate implant, and that's what my BS wants to do as well.
I think the PS is just being somewhat conservative, wanting to do a tissue expander...he wants to make sure the reconstructed breast will match my good one.
My BS said she didn't think that would be a problem with immediate recon. (I have smallish breasts, and actually my 'cancer boob', as I call it, is smaller than my normal one. So maybe it'll end up looking even better!)
Almost forgot to mention--
My oncologist also brought up the possibility of me getting my ovaries out, so I can take one of the post-menopausal drugs, which he says are actually better and better tolerated than Tamoxifen.
He said removing ovaries is a simple outpatient procedure.
OR
he said I could try Tamoxifen, see how I do on it..and if I have crazy side effects, do the ovarian removal then go on one of the other drugs.
I told him, I'm 50..maybe I'll end up going into menopause anyway.
How are you doing?
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JaymeB--as far as risk factors go..from what I read, I think it's the fact that we have hormones pumping out for most of our lives..back in the day when women had a lot of kids, really young, their bodies got a long long break from estrogen and progesterone production. Apparently it's the nonstop menstrual production of these hormones that can put us at risk for BC..which made sense to me since my tumors are both ER+/PR+.
I wish I had known all that a long time ago.
This one book I've been reading is meant for doctors, and suggests that doctors put women on Tamoxifen to PREVENT BC even happening in the first place, if they have our risk factors (1 or no child..early menstruation and late menopause, etc)
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Hi Stronghope! So sorry you're in this club that none of us wanted to join.
I can say, you will go through a lot of ups and downs initially. We all do. I was diagnosed in September and am getting a unilateral mastectomy, end of this month. I'm glad I didn't panic and feel like I needed to rush to do bilateral mastectomy but took my time, and got all the diagnostic tests I needed. I feel I am making the right decisions for my treatment, and it's very comforting. Esp since I took the time to find the right doctors. I feel a lot better now than I did when I first joined the forum.
We're all here for you!!
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Sounds like you have a good plan and are happy with your BS and MO doctors swg. That is great. I was really happy going direct to implant. If that is what you want and your PS does not do those maybe you need to at least talk with a second surgeon. They have to have availability on your surgery day though so that might be hard to do two weeks out.
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For me the bolus was a damp towel when I had my expander, then I lost the expander because of infection and then when I resumed rads after it was removed it was a thick piece of gel like material.
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hi Jaymeb!
Thanks for the info not sure how it will affect me but good to get some feedback
Thanks! :
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Is anyone having issues with low blood counts? I finished preadjuvent chemo at the beginning of June. My counts were rising and in the low normal range during most of the summer. I went to my primary doctor this week for a sore throat that just won’t go away and he did routine blood work. The office called in a panic because my WBC count was 2.1 and my neutrophils were only 1.2. I know they don’t see that too often but it was weird that I was trying to reassure the med asst. that’s I was not going to immediately keel over. I’ve been on an antibiotic for a week. Just curious if anyone else has issues with low counts 5 months after chemo
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My GP told me that it can take 5 YEARS for blood counts to rebound after chemo. My platelets still just crawl along the bottom of the normal range....sigh!
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Here's a picture of Nisa, me and the girls at the beach!
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I had bolus too. It was my favorite part of rads. Hello new stage 2ers! It got busy here! I saw my BS on Tuesday for a follow up. She still follows me. I found a lump on Monday so she felt it, thinks it's probably nothing but is referring me for ultrasound.
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Great picture ladies!
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Legomaster225, my counts are still in the low range. Finished chemo mid June. I've got a cold now that just won't clear up, haven't had one in years. Might have tocall my MO Monday.
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Thanks Twills. It dies seem that everything takes longer to heal now a days. Minor cuts or bruises last longer, colds, sore throats etc. I’m hoping that improves with time but in the mean time I guess we take extra precaution and treat stuff early. Hope your cold goes away soon.
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TWills, did the expander become infected because of rads? I'm so worried about radiation affecting my expander or causing lymphadema!
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OCDAmy, not sure what caused it but rads definetly impeded healing so the antibiotics couldn't heal the infection. It's pretty common unfortunately. That's why some PS's won't put them in if rads are needed. My first PS wouldn't but I found one that would, no regrets though. It's a crap shoot, and it was worth the risk to possibly be able to do implants I'll have to do DIEP now.
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Thanks TWills. My PS surgeon told me there are risks with rads and expanders but says my skin and incisions look good. You are right, it's all a crap shoot! I just want to get through this next step with no complications, things have gone well so far.
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Thank you beautiful ladies for your warn message! I will be starting my chemo next Mobday. Im so hopeful! I watched a wonderful documentary calked “the secret” from Netflix. I strongly recommend you watch it! It gives a new view of your mind and how powerful we are!! Xoxoxo
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Swg
Goodness, I've missed so much in a few days. My daughter asked to borrow my IPad last night. I relunctaly let her. As we all know, teens have their phones glued to them. Reece's phone, and IPad are in bed with her!!!!! God forbid these teens miss a snapchat🙄🙄🙄. I've been worried about you, so thanks for getting back to me, and letting us know what is going on. It seems you feel a little more at ease since you have a game plan. I do have some questions, if that's ok. I was surprised that your onco said no lymph node involvement to not get chemo. In my case, my onco told me if I had 3, or less lymph nodes, I qualify for the onco dx test. We already new I had one positive lymph node due to an MRI on my breast. If my score was under 18, I did not have to do it. The intermediate score which is 18-30 would be up for discussion. Over 30, definitely chemo. He explained that after my mascectomy, the info from my pathology report would be sent for geonomic testing. My pathology report only had one lymph node positive, which we knew, out of 13 taken. So, I was eligible, and my test came back at 14. Low risk. He said absolutely no chemo. It would only have given me a one, or two percent benefit. Tamoxifen came my new best friend. I never did get a second opinion. Like you, I really like my team of doctors. My nurse navigator was the liaison between my medical team. I only got a second opinion on radiation, and both were yes. Well, my plastic surgeon put in an expander at mascectomy. I would have loved to do an immediate implant, but could not. Once I healed from surgery, my PS had to fill me every week with extra saline until I got to my size. I got a kick about what you said that your "cancer boob" is smaller than your healthy boob. Mine are exactly the same way. I was always self conscious. When radiation ended, I had to wait six months to do my exchange. Uhhhh. So, in February, the expander in my left breast will be replaced with silicone, and the PS will lift my right boob, and work to make it match my left. I hope they look better as well. Then two months later, nipple tatto. This expander will have been in my breast for almost a year!!!! I wonder if anyone has had an expander for that long. Luckily, my PS is pleased with how the breast looks after radiation. On a different note, that makes sense about women who had many kids young as a less risk factor for breast cancer. I'm highly er and pr positive like you. How old were you when you started your period? That also has a factor toward breast cancer. It sounds like your cancer team is very thorough. I wish my onco would have suggested to remove my ovaries. Not sure why he didn't? I see him in December. I'll mention it. When are you having your mascectomy? Are you having lymph nodes taking out? Will you have someone helping you at home after surgery? I'm hoping you get to skip chemo, but if you have to have it, as you know, it does save lives. I would have done it if my onco suggested it. I know I'm saying a lot, sorry to go on so long. I'm so glad you feel more at ease, and each day gets better. I could not wait to get my breast off. It looked diseased. You seem independent. Please accept help. I feel certain you will have drain tubes. I'll tell you some stories about my experience with those soon. I think I've bombarded you with too much. Sorry about that, I get carried away. Thank you for responding. Please keep me updated.0 -
stronghope
I admire your positive attitude getting ready to start chemo. I'll be praying for you. I know we have all had, and are having a long road to cure our disease. How lucky we are that it's early, and stage 2 is curable, and a positive outlook
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ruthbru
Thanks for sharing that picture of you and Nisa. I love pics.❤️❤️ You both look great. Now, who is on the right, and who on the left? Was that in Florida
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OCDAmy
So, that's what those wet towels were for radiation, bolis? Never heard of it. When those towels were put on me, the techs, and I referred to it as the "spa treatment". I found it soothing. If I didn't have to breathe in and out so much, I could have had a short nap. lol. Anyone who is starting radiation, you'll do fine. The fatigue hit me at the last week, had some skin irritation, but all fine. I just hated the sharpie marks, and those sticky things they put on you. My treatments were in the summer, so, my marks were very visible. I didn't care. Hope everyone is having a good weekend.
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jaymeb, that's how I felt about the warm towels during bolus, Spa like. I had my left expander in for 1.5 years. My skin and tissue were well healed after radiation by then. Radiation ended December 2015 and exchange was in March 2017.
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Hi ladies, how’s your weekend so far?
Hope, what kind of chemo are you going to have? Possible you can put that on your profile? I just finished my chemo only a week ago, it was a tough path but all of us did it. You will get your supports from here, many ladies have good advice and you just need to pay attention to your body.
I haven’t done my lab test after last chemo, I’m hoping my blood counts aren’t too low. Based on my past chemo only knocked down some wbc, my red blood count was a little below normal. I’m still stay away from crowds maybe a week or two I will try to test out my wbc.
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My counts are actually lower than when I ended chemo in June. Primary care dr was very alarmed. Called me several times but I was shopping yesterday and didn't hear it. He called my husband who was at a football game. Freaked us both out. He did get a hold of me and wanted me call my MO. My conversation with the MO on call yesterday was not quite as alarming. He said the numbers are low (WBC 2.1 neutrophils 1.2) but I just need to use common sense in crowds and follow up in a couple weeks unless I have other issues. He said the chemo will suppress the bone marrow for up to a couple years and that swings in counts are notabnormal. Especially when your body might be trying to fight even a common cold. He said the bone marrow kind of sputters as it tries to kick into gear. I did appreciated my PC doc being so cautious and tracking me down and the MO for the explanation and calming words on a Saturday.
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Molly50
If it's ok to ask, how come your expander was in for that long? Was that uncomfortable? Mine has been in since March, and it still has a dull ache sometimes. Usually, in the mornings. It might be the way I sleep. I turn side to side. My exchange surgery is in February 2018 for my silicone implant. Then two months later, nipple tattoo. I just realized you had a prophylactic mascectomy on the other breast. I would like to do the same thing, however my onco is against it, since the right breast is healthy(so far). Did you have your other breast removed by your choice, or was it recommended? I've met women who were assertive about having both breasts removed.0 -
Hi JaymeB,
I will actually have my surgery Nov 28..that's almost a week away! So nervous ,ugh. I will actually have help... a niece is coming out from California to take care of me for a week. Then a friend is supposed to stay with me from out of town..I've already asked people to bring me food.
I think plastic surgeons like TE's because you have to keep going back to them for fills..so they make more money--that's something I read.
My surgeon is doing sentinel node biopsy. I'm keeping my fingers crossed my oncologist is right and, no positive nodes!
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Jaymeb, I had prophylactic MX as well. My breast surgeon told me it wasn't necessary but when I said I wanted it he said he understood. I did it for peace of mind but also so both breasts would look similar. I wasn't sure they would match as well. I've had my expanders since July. I've had chemo now starting rads and then my PS says we have to wait a minimum of 3 months after rads for exchange but she prefers longer. I'll probably have my expanders close to one year.
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swag - my fills were “free” in that I was never billed for these appointments. They were included in the cost of surgery I guess. I think it would have been extremely uncomfortable for my PS to just put implants in at the time of my MX, although I know some women who go direct to implant if it’s prophylactic and there isn’t an issue with thin skin.
Best wishes on your surgery!
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jaymeb,
The day of my left mx I found out I have a genetic mutation that increases my risk of a new breast cancer to 29%. later when I discussed the results with my BS she recommended I get a prophylactic right side mx. So off to radiation after my umx. Then waited until I had time off to take for the prophy umx. Then waited until I had time for the exchange surgery. To answer your question about the TE, it hurt like hell at first. I was out of my mind with muscle spams. Then things settle down after radiation. It never really was more than an annoyance after that. My second TE never, ever hurt. Not ever. It was weird. I have not gotten nipple tats because I am unhappy with my right implant. I will probably get a revision but for now I am fine as long as I wear a bra. Isn't breast cancer fun?
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My PS is very conservative and will not do direct to implant. He said you need time to stretch the skin and create a pocket. My sister had direct to implant because she already had implants prior to her pbmx.
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