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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited March 2017

    thanks Chrissythat is my whole issue with the process, she should have started chemo and 3 mos after SX no chemo with 12 nodes positive. That is my second opinion reason.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Goincrzy I do know that some docs wait a little while for surgery to heal and if rads are given for the skin to heal and then chemo is given. You mentioned that a port was put in in preparation for chemo.........is it possible that your MO is still planning chemo for you? Either way, a second opinion is always a good idea.

    Love n hugs. Chrissy

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited March 2017

    When the BS called to talk to RO about radiation because as I said he knew he didnt get clean margins she said no Rads till after chemo. He spoke to the second opinion Dr which is his collegue and he spoke to current MO.I have appt Monday with his colleague for my second opinion. They are all in agreement I should have had chemo, and my gut says she (current MO ) messed up.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Yes, I would agree particularly if rads were to be given after.......it does indeed sound like she dropped the ball.

    At least your second opinion is just a day away so things can be picked up and put back on track. Goodluck with it and do let me know the outcome.

    Love n hugs. Chrissy

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2017

    Goincrazy8, maybe your onc suspected that you were stage 4, and that was why no chemo was offered? Because if you were, then in most cases, it seems chemo is not offered because at that point, it is all about quality of life, because chemo can and in many cases, does cause many other problems. I always wondered too if I really WAS stage four from the get go, because my pet scan was showing a few weird things before chemo, that my after chemo pet scan never showed or even mentioned. Because when I was having problems in my very first year after dx, I tearfully told my BS that I wished I had been stage 4 from day one, SHE thought I was wishing my self dead! No. I was just wishing(I had been so rushed into everything, and didn't even have time to KNOW which questions to ask, or to just insist on only hormonal therapy) I would have went straight to hormonal therapy: NO surgery, NO chemo. She is no longer my BS, even tho she was a gifted surgeon, just because she got tired of my questions and let me know it, too. But here I am supposedly still stage lllc, alive.

    jackboo, big hugs

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited March 2017

    tomboy so with 25 positive nodes you would have just done Horomone therapy?

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  • maryland
    maryland Member Posts: 1,298
    edited March 2017

    Goincrzy8, for what it's worth, I was initially dx, stage 2 after biopsy of breast and sentinel lymph node tested positive for ER+, PR+ ILC. BS sent me right to MO for neoadjuvant chemo. I had 6 rounds, 1 every 3 weeks and then they waited 6 weeks to do my bilateral MX. Turned out I had 10 positive nodes all with extracapsular extension, lots of active BC in breast and LCIS in left breast for a final dx of 3C. The chemo had absolutely zero effect on the cancer, it was quite a blow knowing that I could have skipped it and gone right to the BMX and rads but who knew? I take my little Arimidex everyday and tell myself that it is keeping the cancer away. Everybody is different, seems each cancer behaves differently and second guessing and coulda, shouda, woulda will make you crazy. It is what it is and we have to move on from there, knowing what I know now I would not have had chemo but there was no way that me or my doctors could have known. That said, if there is anything I've learned it's that I have to be informed and do what makes me most comfortable but there are no crystal balls. Good luck with your second opinion, I hope you find the best treatment for you and peace of mind moving forward.

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  • jean1945
    jean1945 Member Posts: 5
    edited March 2017

    Primary recently ordered CT of head and neck to explore cause for some neuro symptoms. Found a "lytic lesion" in C3 spine. Neurologist said not responsible for symptoms, but my onc should see report. I was kind of stunned. I came home and started researching and got a little scared. What I read sounded like ca. Called onc. She looked over CT and ordered a skeletal survey (I cannot have a MRI as I have a pacemaker). Now I find out I have multiple "lucencies" on my skull. Onc says blood work clears multiple myeloma; but we (she) don't know just what these things are on your skull. They could have been there all your life and cannot be biopsied. Just have to wait and xray again in July. My primary says I am imagining pain and headaches because of the xray that she never considered that I may have bone mets. Am I gun shy? Or should I be concerned (anxious, desperate, fearful, etc)? I know I'm with the experts here on this site (the been there, done that crew) On a professional site I read that the shadows(lucencies) don't appear on radiograph until 30% of bone has been destroyed, 55% of bone mets to skull is bc mets, and the average time post bc for its diagnosis is 71 months. Yep, I'm worried. Anybody know about this.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Hi Jean, I can't tell you what the 'lucencies' are but I can tell you that even if it is bone mets it's still possible to treat and even get into remission.

    The thought of having mets is not a nice one but there are many women living long lives. Treatments over the years have improved and expanded so gives us way more options. When my bone mets were found I was given the 2 years talk but here I am, a couple of months shy of the eight year mark with no evidence of active disease and aging totally disgracefully and loving it.

    Try to relax a little (perhaps your headaches are stress related), watch how you are feeling and your pain level and have your new xrays in July to see if there are any changes. A lot of times with this disease it is a waiting and watching game to monitor changes.

    Deep breath lovely, you got this.

    Love n hugs. Chrissy

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  • jean1945
    jean1945 Member Posts: 5
    edited March 2017

    Thanks Chrissy. Will try to keep my head,lol, and wait an wait.

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2017

    chrissyb, totally disgracefully! I love it! me too!

    GoingC8, yeah I woulda just done hormonal. Altho I have found out over the last several years that they are not nice to me. my body really does not like them. So, I have stopped. My pain doc is encouraging me to see my onc, whom Ive not seen in a year, his choice not mine.

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  • Goincrzy8
    Goincrzy8 Member Posts: 387
    edited March 2017

    Had second opinion today. Very nice Dr, explains things in layman terms. In PET they did find issue with kidney, he said to keep the surgery date and have the kidney removed, continue on Ameridix. Chemo should have been started in January and then move forward with other tests. He says we will treat one thing at a time. I had a nodule on left side of neck being on Ameridix has shrunk the nodule in almost one month. If we need chemo after the Kidney then we will go that route. SO I will be changing my medical group and he will take me on as a patient.


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  • Tomboy
    Tomboy Member Posts: 3,945
    edited March 2017

    have you asked why that nodule on your neck has shrunk after one month of Arimidex? I certainly would! If it was cancer there, I'd say Arimidex is very powerful! I had a sinus infection , possibly, before my breast surgery, and my node in my neck was swollen. Now, I did have an unusual and tough time with my bs bs, and she was mad at me cause i refused to have it biopsied. She insisted, even after I told her that every time I had an upper respiratory infection it swelled up. So I let her, and of course it was benign... Has yours been biopsied??? Why are they taking out the whole Kidney??? Did I miss something??

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Goincrzy that is great that they explained everything to you and will take you on as their patient! Sounds like you will be much happier there and that's a good thing.

    Love n hugs. Chrissy

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited March 2017

    I wanted to report my hip pain just stopped one day and my self-diagnosis was piliformis sciatica, probably caused by the fall on my other hip in late December. Because of this event, I called my MO yesterday and gave her a big YES to her question, from my last appointment in November, of taking Fosomax, which they have found can prevent or lower the incidence of bone mets.

    I hope good news for my other fellow worriers!

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Great news Quincat!

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  • QuinnCat
    QuinnCat Member Posts: 3,456
    edited March 2017

    Chrissyb-imho good news should always be reported :

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Quinncat, I totally agree!! 😊

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  • 7of9
    7of9 Member Posts: 833
    edited March 2017

    Goincrazy8 - just wanted to say way to go. Sounds like you are in good hands. I met a woman who had 2 tumors out, one on spine, one in lung. That was 7 yrs ago. I believe she is on anti-hormonals. Last I checked she had been on herceptin for 5 yrs strait. You would never know she had this ongoing maintenance by looking at her.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi

    I am not yet diagnosed stage 4 but it's highly likely. I had a chest biopsy yesterday but have been warned to expect it to be cancer.

    I am swinging between some hope that there is only one small area not too deep into chest and complete terror about its location. My BC consultant has talked about living years and treatment options but I haven't read much about this location.

    I get some tumour biology results on Tue but in the meantime can anyone tell me down a little. Can I hope that they will be able to get it under control?

    Liz

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Hi Liz, I know right now you are terrified and you have every right to be.........waiting for that ball to drop is really not good.

    With the treatments that are available now, there is every chance that that it will be able to be controlled regardless of it's location. There are many on these boards that will tell you that no one has a crystal ball when it comes to this disease but they can reassure you that life goes on and it's up to us to live it the best way we know how for how ever long it is.

    On a personal note, I was given the 2 year speech when I was dx and here I am two months off eight years.........it is possible.

    Have faith and do try to go with the flow.....not easy but possible. Good luck.

    Love n hugs. Chrissy

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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Dear Chrissy

    Thank you for the comfort you have given me in replying. I am swinging between being a bit optimistic to being terrified. I font understand how I am supposed to adjust. 2 weeks ago I was teaching full time and now I feel I'm facing being ill again even though I now feel well. My kids don't deserve this either and don't know yet. I may have to get some medication to calm me. Wanting to rewind to when I was able to just be.

    Your story has given me hope.

    Liz

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  • Midwest_Laura
    Midwest_Laura Member Posts: 168
    edited March 2017

    Hello, 7of9

    Do you have anymore details on your friend who had spinal mets removed? I have 5 spots on my spine that cannot be biopsies because they are on the anterior side. I was under the impression that bone mets is only treated with radiation and/or removal. Since I can't remove a portion of my spine, I thought my only choices were radiation (unlikely over such a large area) or the hope that hormone therapywill keep things under control.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Liz, it takes time to learn to adjust to the idea that you are once again dealing with cancer so please don't be hard on yourself. Stage IV is treated a little different to the first time round due to the fact the docs are not going for cure but control. The treatments are more gentle so the SE can be a lot less as well. There are many stage IV women still working full time jobs and living an adjusted life but still full. There may well be no need to tell your children straight away but that is your choice.

    Breathe dear lady and be gentle on yourself........this all takes time but once treatment begins and it may just be a little pill to start, you will begin to feel a bit more optimistic.

    Love n hugs. Chrissy

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2017

    Hi Midwest Laura, you are correct when you say that bone mets are treated with rads and if you are ER+ anti hormonals. With the rads they would spot target rather than blanket that way they can treat more easily.

    Anti hormonals really are a very powerful medication so don't let ttheir size fool you. I have had nothing other than Arimadex and Femara and the Femara has gotten me to NED and I have been that way for six years.

    Hoping you will take heart,

    Love n hugs. Chrissy

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited March 2017

    jackboo, your emotions from optimistic to terrified are understandable. It is a roller coaster of emotions. Many of us takesomething to help us with the overwhelming feelings, so by all means, ask your doctor to prescribe something for you if you think you need it.

    My feelings were such a jumble after diagnosis, and the doctors kept prescribing antideppresants, which made my situation worse. I wast finally able to sort thru my emotions and realized my issue was anxiety, so I got an anti anxiety medicine that made all the difference in the world. Instead of being paralyzed by fear and not being able to get off the sofa, I was able to hear the birds singing outside and move forward with life. I was never one who needed anything more than an antibiotic for strep throat and always powered thru the tuff stuff life doled out. So, I had to swallow my pride and humble myself and take medicine to help me cope and thank God I did.


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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi Chrissy

    Yes I have only known for 2 days and still do t have lab results back yet. My BC nurse has just chatted to me and that helps. I am praying that a thoracic surgeon will be able to operate on my chest. I do think that would be scary but mentally it would make me feel better. I know it wouldn't mean that further spread would be halted but I think survival times would improve. This shadow isn't too deep, so much so that they tried to see it on ultrasound.

    Keeping the teenagers out of this one for now as they are taking exams. 16, 15 and 14. My youngest worries me- my girl. I have to fight for them.

    Liz

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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi DivineMrsM

    Glad to hear from you. I have been given diazepam 10 mg but haven't filled the prescription. I'm already on blood thinners and am concerned about side effects. Anti anxiety pills are really what I need as it's the anxiety swings that are making things difficult. For example, yesterday I had a CT guided biopsy. I felt dreadful as we arrived at the hospital; to the point of collapse. I managed to calm myself down as the Dr turned out to be an acquaintance of my husband and we had some banter over playing tennis!

    Then today I am back to despair even though Richard has been at home with me today, husband I mean.

    Liz

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  • Midwest_Laura
    Midwest_Laura Member Posts: 168
    edited March 2017

    Hi, Chrissy

    Thanks for the words of encouragement.  I have made a "note to self" about the power of hormonal therapy.  Intellectually I already knew this, but I didn't incorporate that fact into my day-to-day thoughts. 

    There is hope.  I could become NED.  You are an example of what is possible.  There are many examples on this forum of such hope.  It's time for me to focus on what is possible instead of planning for every worst case scenario. 

    It is time to turn the corner.  It is time for hope.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited March 2017

    Hi to everyone,

    I am posting a pre results update, awaiting results for this shadow on my lung and really just wanting to talk with you all. Still in the dark.

    I find out biology of tumour on Tue. In the meantime I am on high dose blood thinners for this clot which is causing me fatigue and I seem to have bowel issues, lost some weight too. This medication in itself is a challenge as I am on a higher dose of a Rivaroxaban for another 9 days before I swap to a lower dose.

    My husband has been amazing but I think he is beginning to crack: he has just gone to the gym and is quiet. My 14 year old girl appears to have no friends and relies on me to take her out at the weekend. She really worries me.

    I am trying so so hard to be positive but it is like my world has stopped and already the relationships around me are changed. I am über clingy with husband and I have to try and pull back I think. Ideally I would suggest a holiday for us right now but I'm only at the beginning of my treatment- the very beginning.

    I looked into a private clinic in Manchester last night. Perhaps just for their second opinion service. I have a shred of hope that this could be benign but something has caused this clot and I'm prepared for it being mets.

    Chrissy I know you have said there is hope for me to return to something of the life I had just 2 weeks ago- will that be or am I at the start of becoming ill again with treatment. I want to start SOMETHING as soon as I can but I'm premenopausal so even anti hormonals won't be an immediate option, injections to switch my ovaries off was discussed.

    I love my family beyond words and I don't want any of this for them. I am sorry for the negativity guys- only you ladies will understand.


    Liz

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