Stage II w/Lymph Node Involvement
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Day...this is your place to vent as much as the next sister!! You are so newly diagnosed and it gets so overwhelming. And I am sure its hard , too, having Mom back home in Romania. Do you have a good support system with you? ie BF? You are the one true advocate for your health and body! Keep us posted on what the appts bring...Just look at this one day at a time.
Lauren..make sure you listen to your body. Rest and drink lots of fluids. You can do this!
Cagio- You do have a rough road and on the days where I felt so overwhelmed...I would look behind me and see how far I have come already. Remember the day of diagnosis? Look at you now...you are forging ahead and this too shall pass!!! Hang in there, my friend!
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I'm late to this new forum. My BC hx: dx 4/2006 age 49, premenopause. I had taken OC pills late in life which I think was a contibuting factor, besides exposure to DDT as a youngster. I had a large fibroadenoma removed at age 19, then exactly 30 years later BC in the same breast. I have no family hx of any female cancers.
I had just been to the OB/Gyn and had clear exam. I have small breasts but my BC was so deep and against the chest wall - it could not be felt on PE. So when I went for mammogram, BC was not mentally on my radar until afterwards they told me I had BC. I do wonder at times when I had my first mammogram done age 40 if something was seen and then ignored. They made me wait afterwards because they saw something unusual, but then the nurse dismissed me. I asked to speak to the radiologist and was refused - - so to this day, I think she spotted something and decided to wait until next exam to see if something changed. Back then my OB/Gyn only gave mammogram scripts every 2 years and not every year - - and I was on OC pills at the time!!
Anyway, my final pathology was IDC 1.8 cm where the center was a bulls eye 0.5cm DCIS surrounded by 1.3 IDC. (This is why I think the radiologist spotted the DCIS 8 years prior before it spread into IDC.) As a result, I had one positive sentinode out of 18 nodes total removed. ER+ 100%, PR+ 100%, HER2 negative. Lumpectomy, DD AC, DD Taxol, 6 weeks radation treatments, then started Tamoxifen for 4 months. I had an oophorectomy and was able to switch to Femara shortly afterwards.
I have permanent neuropathy in my feet and some in hands. All the body joint pains others describe from Femara. After 20 months on Femara, I was dx with osteopenia and started Zometa infusions now. This is a miserable journey but I don't want to whine --because other patients have it much worse.
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Welcome CP! Wow...you have had a long journey BUT look at you NOW!! Living in hindsight, as you know, will get us no where. I , too, wish I didn't wait the 6 months and come back routine either....Are all the AI's known for their joint pain? How long will you have to be on that?
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Warrior, yes, I have a great moral support. My BF is extremely supportive in everything, I have good friends who come to help around the house when he's not home. Yes, my family being far is hard sometimes.
I guess the visit today was just for the radiologist to meet me and for him to make sure I will follow-up with the radiation. He explained that due to the fact that I had four different types of cancer, of which two invasive and both these invasive quite aggressive ones (ILC and infiltrating cribriform), without chemo and radiation the rate of re-occurence would be 30% in 5 years, and the re-occurence being in the chest wall - from his 40+ years experience. I'm not looking to get the radiation before at least 3 months - need to heal first from reconstruction, then chemo, then radiation. The Radiation oncologist said he will also talk to the oncologist I'm supposed to see next week about the fact that his personal opinion is that I don't need more nodes taken out once I go through chemo, as his opinion is that I need radiation no matter what.I feela little better, he seemed very competent.
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18 months from treatment (the 'full monty chemo etc') and I feel good (not great). The chemo days are like labour pains (soon forgotten) and I'm feeling carefree. Yes the worries are in a box in the back of my mind but I'm feeling good (but different).
Take care
Mal
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I hope to be able to say that too next summer, Mal.
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I agree hind sight doesn't do much for the present, except to maybe learn from it.
Regarding the AI issues, reading these forums will tell you how some ladies are doing very well on AIs while others have more issues. IMO, I think daily exercise (walking) and healthy eating helps maintain weight and joint health. Many supplements ladies list are ciritcal as well IMO to rebuild our immune systems - especially for those of us who had chemo and / or radiation treatments. Post-treatments focus on healing and trying to be as helathy as possible with our immune systems, minimize stress, bad eating habits, exposure to toxins, etc. At least this gives me a minimal measure of control - hoping I can reduce my risks for future recurrence.
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so glad to have found this thread, its so encouraging.I worry about my mum so much, ever since she found out she had breast cancer ive worried that its spread.
She`s had 2 ops mx in september and then all her nodes removed end of oct, still waiting for the results to see how many lymph nodes were involved. I agree with many of you that say its horrible when other people say " thank god my nodes weren`t involved". i hoped she would have neg nodes but she`s got 1 out of 2 so far and will find out friday if there was any more. i dread it, its all the waiting around for the next lot of results that drives me mad. i suppose if there are move nodes involved there will be more tests to be done?
Its really encouraging to read posts with people going strong years after dx with possitve nodes x
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Stephanie1,
I had 25 rads, Why did you get 33 rounds.............7
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Hi Jodie, I agree, the waiting is the worst part! I'm not sure how they do things in the UK, but I would think that if she's had a bilateral MX and they've gone back in to remove more nodes it's because they want to be sure about the staging. That will tell them if your mom will need chemo and/or rads. Waiting two weeks for the pathology report seems awfully long. I hope you find they were being overly cautious. Good luck. I know how hard it must be for a daughter.
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Another milestone for me - had my port out yesterday!!! Even got a bit weepy about it. Discovered that I'm still quite jumpy about things - there was a long delay at the hospital between them taking blood and actually taking the port out (really long - hours) and I started to panic thinking that maybe 'something' had shown up in my blood!!! Silly I know but I am just so uneasy about all this still. Took it easy today as I was a bit achy and sore, more than I expected. Next milestone will be my first PFC mammo and onc visit in Jan (exactly one year to the day of my mastectomy).
Hope everyone keeps sharing their experiences.
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Is the port mandatory? I do not want a port. Can''t they just use regular IV to give you the drugs?
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hi, she had mastectomy on one side only. after both ops she had to wait 2 weeks for the pathology. it does seem a long time,but seems to be the average wait in the uk.
They have said she will be having chemo,so i suppose that will start soon. It`s such a long jurney isn`t it? x
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Day - You don't have to have a port. I got one because I had an infection after surgery and I was on strong IV antibiotics for 10 days, by the time I was finished with them my veins were in bad condition and there was no time to let them recover before chemo, hence the port. As it so happens I got an infection in the incision wound adjacent to the port so it was never actually used for my chemo except for the very last one. They use to have a hell of a time trying to get a vein for IV chemo for me and I was DD chemo so the veins had little or no time to recover between doses and as I had node clearance on the side of my mastectomy they had only one arm to work with. I really think there was a big frowny face on my file because they just hated trying to get an IV site for me - I think they used to have a competition to see who would do me - the loser got me!!!
And things haven't changed much - it took them ages to get a vein for a blood test yesterday - even tried my feet - ouch!!
If you don't want a port and your veins are normal you will do fine - best of luck, we have similar dx except I was dx in January - you will get through this.
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Day,
I am really happy to hear you probably won't get further dissection! The sooner you can start chemo the better.
I had a port and was glad I did, the chemo drugs can be really hard on your veins and I liked not having something stuck in my arm for hours while getting chemo.
I was really annoyed that my regular blood work draws did not use the port tho. I think it was bc you have to be a RN to access one- and the person they have doing blood draws is just a tech. So if your veins were still usable you still got stuck. that varies from place to place though. I got deported a month after chemo ended and the scar left has been really itchy and red-not infected- had it looked at- but three months later it still bugs the crap out of me.
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To all you ladies on AI's with joint pain. THERE IS HELP!! My onco gave me an anti-inflammatory called diclofenac and it is just WONDERFUL!! I didn't know I could live so pain free after being on aromasin. PLEASE, PLEASE ask your drs about this drug. I can now see myself on an AI for five years. You don't have to be miserable. Please let me know how you do.
Kathy
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Hi, Jodie, prayers are coming your way for your mom, what a great support you are to her. She will do fine. Day: I was able to avoid a port for my 8 treatments, I just kept telling them I really did not want to have one. At my last bloodwork draw, my veins were a little worn out, but they got the draw and everything was fine. Kathy: Thanks for your info on this drug for joint pain, I will mention it to my onc. I have been on it for almost 5 years now, and I guess I am just used to the joint discomfort. I have been lucky that my SE are not too bad. I wish you all the best as you are going through this challenging journey. You will all be in my prayers. Remember you are all survivors. God bless you all, Kathy P.
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You all are such a great bunch! Thanks for keeping me in your prayers on Nov 10 during my double mastectomy. I am doing okay. I will check out the link about wigs that was posted. Hope you all are well.
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Yes, I am from Michigan. Grand Blanc. I went to Susan's Special Needs today and am now all set with my wig! They were so professional, kind and helpful. So glad I went there...
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Michlady...I am so happy to hear you had a positive experience through such a difficult time. Isnt the shop so cute??
Leslie..So glad to see you back on the boards, even for a moment! I know those drains are a pain but soon they will all be released and you will be able to forge ahead! Hang in there!
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I hate the drains. They don't seem to want to go under 40 cc/day, and the surgeon doesn't want to take them out before they start giving only 30 cc/day. This coming Wednesday will be 4 weeks of having them. I am so tired and sick of them. Right now they only have a clear yellowish liquid with strands of white tissue-looking like stuff. The surgeon says those are old blood clots that have discolored and are now coming out. I don't know what to do to get them give less output.
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Hi Day= I know the drains are a pain and awful but if they take them out too soon and the fluis builds up iy is no fun having the fluid cause pressure and just have to be removed anyway. It won't be forever! Valerie0
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Day,
Drains suck. I had 1 of my 3 in for three weeks. 4 weeks is a long time. I'm not sure there is anything you can do to reduce the amt of drainage. I had a few really weird sqiggly looking things come out in the fluid- looked like a worm as well as some of the whitish stuff. Hang in there.
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Hi Ladies,
My journey began on my 32nd birthday, when I had an ultrasound and biospy done, which was in July. Tumor turned out to be 7.6 cm. During my mastectomy 3 weeks ago, they checked for lymph node involvement, and it had spread there. So right now they are saying that I will have to have 6 to 8 cycles of chemo, but still have to wait for the final pathology report, to know for sure what they are going to do with me.
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Fitness Diva I was dx at 32 also, back in May. I'm 33 now and recently finished 6 rounds of TAC. Doing rads now. You can do it!!!!!!!!
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The nagging question in the back of my mind is "is it worth living like this?" From surgery to surgery, your life never to be what it once was, YOU, yourself, never to be once you what were, A life spent in pain and suffering from the surgeries, from the complications, from the side effects, I don't want the rest of my life to be screaming in the cage of my body "I do not want to do this anymore! Let me out of here! I feel already that this is not me. I already had started to have thoughts that maybe I made a mistake to even go ahead with the surgery. Maybe I shouldn't have pursued the "standard treatment" for my case, treatment that in a few months will make me look like a shadow of myself, a mutilation of myself, and that for what? For gaining a few more months of pain and suffering. I wish that I had gone with my heart who said "do nothing. There's nothing much left anyway - just use what is left and really live it to the fullest".
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Thank you Lauren
Glad to hear that you are all done with the chemo. Glad luck ith the rest of your treatment...Yes I can.0 -
Hi Ladies, I have been reading your posts. I am 9 year out from diagnosis - almost 10 and I want to tell you that none of you are "toast". Over the course of my journey with BC I have met women with every possible pathology, node positive, node negative. . . ER +, ER-, etc, etc. I can tell you that every single women I have met since my jouney began is alive, well and thriving. Amazing isn't it. I couldn't say that 20 years ago. Like momma2kids I decided to hit it full on. There was no oncotype back then (another amazing tool). There will be challenges throughout your jouney - reach out, get help when you need it. Try to divert youself from the dark thoughts, you are alive, you are well.
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You are right Ozzi but Maybe I should get some help for this depression.All I want to do is sleep and I can't seem to do that either.
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It is a great idea to get some help from depression. Just remember that if you are on Tamoxifen, it tends to interact with numerous anti-depressants. You can see the interactions by reserching it on drugs.com You may want your oncologist to treat you vs Family Practice Dr. if you are on Tamoxifen since they are educated on these changes!
Remember one thing, my sisters...if we worry about tomorrow, then we worry away TODAY!!
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