Anyone want to sit and wait with me?

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited October 2018

    Hapa, good for you! My RO gave me almost the same stats. That’s why I decided to to radiation as well.Anti-hormonals after the rads will further reduce the risk of LRR and DM.

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  • Amica
    Amica Member Posts: 488
    edited October 2018

    I'm still waiting for my PET-CT scan results from a WEEK ago. I am so fed up with the slow medical system in Ontario. It's like a form of torture.

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  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited October 2018

    You've been on my mind Amica. I'm holding you in my prayers, Please keep us posted. The waiting....

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2018

    Very useful information, hapa!

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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited October 2018

    hapa, so glad you went and got some great info! Thanks for sharing here. I hope you can get everything worked out to proceed in the way that makes you feel most comfortable. Keep us updated!

    My breast MRI seems to have been as good of news as possible. It was BIRADS 3, “probably benign.” The way my surgeon explained it was that all the changes they saw were typical for someone post-surgery and post-radiation. So in 6 months they will do a follow-up MRI to be sure all changes have resolved as expected, but she didn’t seem to be worried. She said the changes noted made sense based on treatments and she felt that all would be back to normal in 6 months. Good to hear!

    Im at the ob/gym right now to discuss oopherectomy. Not looking forward to that, but both MO’s I saw strongly encouraged OS with an AI. And if I’m going to be suppressing them anyways, I may as well get them out and not have to get a shot every month. We’ll see what my obgyn says.

    How is everyone else doing?


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  • beeline
    beeline Member Posts: 308
    edited October 2018

    hapa - so glad you had a good experience with your second opinion and thank you for sharing all the rads info! I was resigned to needing it but I feel much better with that risk assessment.

    Colleen - great news on the MRI! Let us know how your gyn appt goes. I suspect ovarian suppression is in my future so very interested to hear. I worry about sudden onset of irreversible SE’s with oopherectomy plus bone loss.

    Amica - hope you have your results by now??

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  • Amica
    Amica Member Posts: 488
    edited October 2018

    Colleen - glad to hear your MRI results were reassuring and that the changes they see are typical post-radiation and post-surgery. I know I had changes to my breast post-radiation that lasted for about 10 years.

    Beeline- yes I finally got my PET scan results on Oct 3. The PET-CT showed only the existing subpectoral tumors, no new area, so that is good news.

    I had a full hysterectomy/oopherectomy after the 5 years of tamoxifen, but before going on the 5 years of Aromasin, and it was probably my easiest, least disruptive surgery. I don't recall any side effects except I have had some bone loss, but that is mostly due to 10 years of estrogen suppression from the endocrine therapy. I was on Actonel for bone loss for decades but then had to stop because it turned out you are not supposed to stay on it so long. Now I'm back on endocrine therapy for the foreseeable future, and my onc actually took me OFF of my calcium supplement because I have high levels of calcium in my blood (which is a bad thing), and my onc is not sure why.

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  • JaBoo
    JaBoo Member Posts: 520
    edited October 2018

    Colleen, so good to hear your MRI was OK! Congrats!! Since we are the same age I will be deciding about OS or ooph. in the near future too. So are you doing AI and not Tamoxifen? My MO hinted at AI, but there's still some time left for me - I'm only just in the middle of chemo. (gosh when I write it it's more real. so long already and only half there!)

    I just had an ultrasound on my C breast for pain. The doctor was looking very carefully and shocked the hell out of me when he found stg. and started to go over the previous pictures and operation protocols - but he then said he just needed to check for clips. It was a few seconds before he explained why is he looking so intently at the pictures - but I started shaking immediatelly!! I guess I'm a wreck since this whole dx. so the result is that there is just fresh scar tissue, healing without fluid buil-up, lymphnodes a bit larger but that's expected and benign. So the pain is probably just from healing.

    And now I'm heading to my 2nd opinion with a MO specializing in women under 40. I wonder what he has to say. It's 5 hour trip by train for me. Next week there's a meeting with an onco-BS at a large faculty cancer centre to discuss a possible DMX with reconstr. It's quite unusuall here to do it... so I'm not decided yet. But the today's ultrasound probably tipped my thinking further in the direction of DMX. The pure fear when the doctor started looking concerned/interested when he discovered the clips... phew. I wonder. I will hopefully have more info after the meeting with the MO today.

    I'm also looking at radiotherapy options, since my cancer center doesn't do any special treatment for left breast. I have already contacted a center where they do the deep aspiration technique to bring the breast a bit further away from the lung and esp. from the heart. They are open to take me on. But there's still some time and also the possible DMX plays a role. I don't know yet if I need radiation in case of DMX.

    Hapa, that's great you've found a RO you can trust so completelly! And thank you so very much for sharing all that info regarding radiotherapy. That is so helpfull for all of us! Good luck with your treatment there and also the lodging in H.

    Amica, good you have those results after such a long wait! Thank you for sharing your experience with oopherectomy and all. That really helps


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  • ColleenS80
    ColleenS80 Member Posts: 271
    edited October 2018

    beeline-I’m worried about bone loss too. My MO at Vanderbilt said it’s not a matter of if I have bone loss, but when. :( However she still felt strongly that it was worth the risk reduction. I tend to agree even though it’s sucky to have to choose the lesser of two evils. I plan to be as proactive as I can to lessen the effects. Hopefully things like calcium supplements and weight bearing exercise will help reduce the effects.

    Amica, so glad they didn’t find anything else on your scans! Thanks for sharing about your surgery. That’s curious about your calcium levels-I hope they can figure that out!

    JaBoo-yes, I am doing AI. I hate that I’m being put into menopause so early, but I really don’t want this cancer to come back. I decided that for me, it was worth it for the extra risk reduction it provided. It’s a hard decision! So glad nothing concerning showed on your ultrasound. I know what you mean about that feeling of panic...so terrible that we have to “look forward” to that from now on. Interesting that you’re seeing a dr who specializes in younger patients! You’ll have to let us know how it goes and what he says. I hope it’s helpful for you!

    My apt with my obgyn went well. She asked if I preferred ooph or a full hysterectomy. I told her ooph unless there was any indication that a hysterectomy was a better choice for some reason. She did an ultrasound and said everything looked good, and even though i have an old uterine fibroid, it’s calcified and she didn’t see it causing any problems on the future, so I decided on just ooph. I don’t want to worry about the loss of support that hysterectomy can cause later on as my grandmother had that problem and had to have surgeries later on because of it. So, ooph on December 28th. Merry Christmas! Haha-actually it is a present bc I’m getting it done before the change of the year, so I won’t have to pay anything as I’ve already met my out-of-pocket for the year a long time ago lol

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited October 2018

    Amica, congrats on your good results!

    Colleen, I am debating the same question. My MO wants to give me Lupron shots, but I am wondering if I should just do ooph and be done with it. Have to see my OB/gyn to discuss it with him.

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  • hapa
    hapa Member Posts: 920
    edited October 2018

    Regarding bone loss: take Vitamin D as well as calcium. Apparently prunes help too: Dried Plums, Prunes and Bone Health: A Comprehensive Review. And weight bearing exercise, like hiking or running or jumping rope. But really, running, because according to this study it reduces your recurrence risk by a whole lot as compared to burning the same number of calories by walking: Significantly greater reduction in breast cancer mortality from post-diagnosis running than walking. That article almost seems too good to be true, but if it is then you should all start running.

    Amica: FINALLY! And congrats on the good results.

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  • Amica
    Amica Member Posts: 488
    edited October 2018

    Hapa - thanks for posting the links to those interesting articles!

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  • JoE777
    JoE777 Member Posts: 628
    edited October 2018

    Amica, I had high calcium in my blood when I had bone metastasis. That's why I'm on zometo infusions

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  • ksusan
    ksusan Member Posts: 4,505
    edited October 2018

    Amica, I'm glad to hear your results.

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  • Amica
    Amica Member Posts: 488
    edited October 2018

    Thanks all! I will note that my oncologist never could be bothered phoning me with the PET results, and I was a wreck waiting over a week for them. I had to find out by driving an hour each way to my family doctor who get's cc'd on test results. Turns out the results were in the end of last week and no one could be bothered letting me know. I would very much like to switch oncologists, (I can't switch cancer centers in Ontario unless I move), but I'm afraid of getting someone who is even worse (if that's possible lol.)

    JoE777 - How high was your calcium level? Did it get lowered? I hope so. I know it can be dangerous, so far I am in the mild range of hypercalcemia but it keeps going up, and of course my oncologist has no clue why. So another thing to worry about....

    Wishing everyone well :)

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  • JoE777
    JoE777 Member Posts: 628
    edited October 2018

    I don't know the the numbers because I was in so much trouble. I had been having muscle spams in my legs for a couple of weeks which I thought were related to a back injury. I couldn't eat, think clearly or sign my name. It was horrible. I just had my 8th monthly infusion today and will be cut back to every 3 months once the tumors are gone.

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  • Amica
    Amica Member Posts: 488
    edited October 2018

    JoE777 - I am so sorry that happened to you, and thank God it is under control!

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  • beeline
    beeline Member Posts: 308
    edited October 2018

    Amica - so happy for your good news!

    JoE777 - that sounds terrible! So glad the zometo is working for you

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  • JaBoo
    JaBoo Member Posts: 520
    edited October 2018

    I've had my meeting with the other MO, who treats young women mostly. He had some valuable insights about hormonal therapy (thinks I am at big risk for osteoporosis, since I'm tiny), suggested switching to Tamoxifen after about 2 years. About the preventive double MX - he wasn't so keen on it. He said I may rather wait a bit after completition of Herceptin, wait for my immune system to settle and then do it. But all in all I have still decide for myself (of course). Radiation plays a big role in this. But there wasn't any big no-no either way. That's why I went to him - I wanted to hear any big concerns with either way I decide... Well, so I don't know. Either DMX or radiation after chemo. In fact, I am where I was yesterday. 🤨 Well, never mind. Next week I'll discuss with my MO.

    After 3rd Taxol my legs have crawlies all over... But not the feet (maybe the icing?)

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  • Utopria
    Utopria Member Posts: 204
    edited October 2018

    Hello haps - good luck with your radiation...I have also started going to MD Anderson after recurrence in 2016, and I have not been disappointed. They are the best. With my recent diagnosis of bone Mets on the spine, I have decided to do the radiation in MD as well. I also have a very good employer, and I don't see any issues from them. In my case it's going to be 10 days of radiation I hear. I have a teenager at home and I have to figure out where to keep him.

    Ibtw I was on this thread waiting on a biopsy, biopsy results came back positive 😔.. now I wait for radiation...

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited October 2018

    utopria, so sorry about the positive biopsy! Good luck with radiation. How many sessions do you have to have? I just started radiation as well. 4 down, 21 to go.

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  • Utopria
    Utopria Member Posts: 204
    edited October 2018

    InnaB - I'm still waiting for my initial consult with the radiation oncologist.. My MO said it will probably be 10 days..

    Good luck with your rads...

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited October 2018

    Hi, ladies! How are you all doing? I am still getting radiation. Today was #12. The worst side effect for now is fatigue. Let’s hope it continues this way.

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  • hapa
    hapa Member Posts: 920
    edited October 2018

    Checking in from Houston. Rads #1 today. No side effects yet. My job is annoying me about getting shit done this week. ITS GETTING DONE GODDAMMIT AND IT WOULD GET DONE FASTER IF I DIDN'T HAVE TO KEEP SENDING YOU UPDATES!!!!!

    Inna - are you doing whole breast and lymph node rads?

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  • InnaB2018
    InnaB2018 Member Posts: 1,276
    edited October 2018

    Yes, hapa, whole breast, chest wall and supraclavical lymph nodes.

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  • Amica
    Amica Member Posts: 488
    edited October 2018

    Good luck with the continuing Rads Inna and Hapa !

    I'm in my second week of a pause from Cycle One of Ibrance because my neutrophil count is stuck at 600 (in Canada .6) ; it needs to be above 1000 to continue on to Cycle Two. I'm hoping I don't "fail" this treatment, because at my last appointment my oncologist said if I failed Ibrance, then I would be only on letrozole. I thought there were a bunch of different options and if one medication didn't work they moved on to the next! I don't like this oncologist, and I'm going to ask to switch to another one.

    Hope everyone else is doing well.

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  • JoE777
    JoE777 Member Posts: 628
    edited October 2018

    Amica, I don't know if ibrance is like kisqali but I couldn't go past cycle two on 600 and the doctor reduced it to 400.

    It's my understanding that if kisqali stops working my doctor told me there were several she could prescribe. I see where your second DX has pr-. Did I get that right

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  • hapa
    hapa Member Posts: 920
    edited October 2018

    Amica - Ibrance comes in three strengths, 125mg, 100, and 75. Usually they will start you at 125 and step you down if you don't tolerate it. Do you know which you were taking?

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  • Amica
    Amica Member Posts: 488
    edited October 2018

    I'm taking 125 mg, but it's only been one cycle. At my last appointment my onc said once my neutrophils go back to 1000 it is her practice to re-start at the full dose again. But given my fatigue level, I may ask her if I could re-start at 100 mg. What bothered me more was her saying that if I can't tolerate the Ibrance, I would be only on the Letrozole. That's not my understanding! I thought if one medication doesn't work out, they try another one, like the Kisqali that you are on JoE777.

    Yes my pathology changed to PR negative. But even that got screwed up. First the pathologist put down negative, then he sent out an amended report in which it said PR positive. My oncologist didn't even notice! Like I said I really don't trust or like her. I had to call the pathologist and ask him which it was, he said he made a typing mistake and that it is PR negative, and that he sent out yet another amended report. My onc didn't even mention it, until I did.

    The other thing that really bothered me about my onc, is that I noticed a lot of women in my situation are on bone builders like Prolia. So I took the initiative to visit a rheumatologist I saw about eighteen months ago, and she prescribed Prolia injections to prevent further bone loss. I said that the rheumatologist had said my onc could phone her, since proper consult notes were not sent to the rheumatologist. My onc actually said 'no', she wouldn't do that! Not even a 5-minute phone call to make sure everyone is on the same page!

    It feels like I am having to act as my own patient care coordinator, and I believe that that is the role of the medical oncologist. I saw online that my onc just got married in early September, maybe she is distracted and just doesn't give a s**t.

    Sorry I'm going on and on---I'm just so frustrated. I feel quite dismal.



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  • JoE777
    JoE777 Member Posts: 628
    edited October 2018

    Amica, if my math is right , you're 20 years out from first DX. Wow!! Please try to keep plugging on. Don't give up when there is more than one path if this doesn't work Keep us in the loop. God bless, and kick cancer one more time.

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