If you are not Stage IV but have questions, you may post here

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2012

    Cynthia -  Your post is so well written.  I have gone to the Stage IV forum to read information and learn from your experiences.  The first post at the beginning of this thread is my initial entry into this forum and I am so grateful that we now can access the wisdom of Stage IV women. 

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  • Cynthia1962
    Cynthia1962 Member Posts: 1,424
    edited March 2012

    Thanks Barbara!  I used to visit the Stage IV forum before I was a "member", too.  As a Stage III, it felt too close for comfort so I figured I would get an idea of what I might face.  I never felt comfortable posting questions there, though, so I'm glad this thread is a good alternative for those who may feel the same.  Welcome!

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  • 1701jms
    1701jms Member Posts: 57
    edited March 2012

    Hi:

    I'm posting here because I'm not sure what "stage" I will be but it doesn't look good.  Was diagnosed with DCIS in 7/2010 ER+ PR+ HER2.  Had RT Mastectomy and reconstructive surgery was told I was fine.  I moved, switched to a new oncologist - he ordered a PET Scan and oncologist informed me that I have "spots" and "tumors" in both lungs (largest is 2.7 cm) and enlarged lymph nodes in chest and neck and possible "lesions" in these lymph nodes. I'm about to schedule biopsy but I want to know what I'm potentially facing. I've been researching all day and cannot determine what stage this puts me (if this is a breast cancer recurrence).  To me this sounds like  Stage 4.  I was hoping someone more knowledgeable could help me b/c oncologist is pretty tight-lipped. Does this sound like advanced or Stage 4 breast cancer? 

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  • alesta29
    alesta29 Member Posts: 1,505
    edited March 2012

    Hi 1701

    Welcome to the boards!

    Reading through your post I wondered if the onc had said tumours or just spots (or both).  Along with other mets sites, I was diagnosed with a lung met however after recent scans, they now think it was something inflammatory, rather than tumour cells. 

    It's unusual (but not unheard of) to go from DCIS to stage IV. Where do you go from here? Do you have any more scans / another appointment booked? If it is lung mets, it would be worthwhile asking for a biopsy as tumours can change their status so while you were ER/PR/HER2+ this might have changed and would affect the course of your treatment. 

    If it is your 'worst case scenario' the most important things are: 1) Having an onc you can trust and feel comfortable with 2) Getting a treatment plan sorted. This may involve hormones/chemo depending on what is recommended and your own feelings about it. Remember, if you're not sure, its very worthwhile asking for a second opinion.

    I know your head must be spinning right now. Day at a time. Let us know how you get on and feel free to pm me.

    Hugs

    Laurie x 

    PS: Rule of the boards - don't Google Stage IV and anything to do with survival. It's out of date and will scare the crap outta you!

    Stay in the present and live each day as it comes. Stage IV from the get go June 2011. ER/PR+ HER 2- Liver, lung, bone & axillary mets.

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  • ma111
    ma111 Member Posts: 1,376
    edited March 2012

    1701,

    Sorry to hear of the involvement with the lungs, chest and neck. There is good information here at bco.

    I left my first oncologists because he would not answer questions nor treat side effects of chemo. You can change in the middle of treatment. A site that I trust; http://www.cancer.gov/cancertopics/types/breast There is good information on this site also . http://www.nlm.nih.gov/medlineplus/

    When the breast cancer travels it sometimes turns from - to + which would change treatment.

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  • apple
    apple Member Posts: 7,799
    edited March 2012

    Chef 127.. please don't feel ostracized.. (speaking for myself) i hope we are always of use and support here in FOUR land (we need a logo).  I too kind of let myself go 'undetected' for a while.. my bad.

    I'll meet up with you on the foodie threads (former chef myself - I've been reading your comments in the natural area.  i love to cook.

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  • ma111
    ma111 Member Posts: 1,376
    edited March 2012

    I meant that it can turn from positive to negative, sorry about the typo.

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  • 1701jms
    1701jms Member Posts: 57
    edited March 2012

    Hi alesta29:

    Thank you so much for your post.  I'm so scared and anxious - the waiting is terrible.  I met with the surgeon today and am scheduling a lung biopsy in the next two weeks.  It appears oncologist and surgeon have recommended an "open" biopsy where they will remove 1% - 2% of my lung tissue to determine if it is cancer and if so if it is a recurrence of breast cancer.  I'm scared about this biopsy since I was told by the surgeon it will be painful.  I'm going to get a second opinion.  Do you think I should get the biopsy AND then get a second opinion?  Or should I get a second opinion before I get the biopsy? 

     What does everyone else think?

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  • 1701jms
    1701jms Member Posts: 57
    edited March 2012

    ma11:

     thank you for your guidance!  Yes, I'm a bit disappointed my oncologist is so reluctant to give me information.  I want to have all the information in front of me but he won't give me any concrete information until we receive a pathology report!  I am looking for a  second opinion and maybe switch oncologists.  I'm looking at MD Anderson in Houston, TX. 

     Thanks for all your encouragement!

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  • Stormynyte
    Stormynyte Member Posts: 650
    edited March 2012

    alesta29, I soo wish someone had told me not to google serch. It did more than scare the crap out of me, I was a wreck for days till I found this fourm. That is great advice and should be something you are told when you get your dx.

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  • ma111
    ma111 Member Posts: 1,376
    edited March 2012

    1701,

    MD Anderson is a wonderful place for you to go. I do think that you should get the bx. It may have turned ER- which will change your treatment. Things like Tamoxifen and a few other things doesn't work on the ER-.

    You can change oncologists at anytime. However, keep things moving and don't delay any treatment in the process. If you can get an appointment at MD Anderson right away then go.

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  • alesta29
    alesta29 Member Posts: 1,505
    edited March 2012

    1701

    Personally, I'd try to get a second opinion before the biopsy - belt & braces and all that. I hate it when drs tell you things are going to be painful and feel like smacking them! It's part of their job to make you as comfortable and pain free as possible so what can they give you to make you more comfortable during the proceedure? I'd ask them that. None of this, "Grin and bear it" Bet if it was them or their OH on the table they'd be pushing for some sedation at the very least!

    Stormynyte

    I remember the first days after diagnosis, I was compulsively googling and becoming more and more despondent. Bit like watching a train wreck happening. Awful but you just can't take your eyes off it...

    Laurie x 

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited March 2012
    Hey, all: A group called METAvivor is trying to win money to fund research in metastatic cancer. If you go to this link, you can vote.

    http://www.wix.com/metavivor/vote

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  • barsco1963
    barsco1963 Member Posts: 2,119
    edited March 2012

    Thanks for the reminder gritgirl. I have been voting when I remember to do so. Another note to mention is that on Friday March 9, each vote submitted METavivor will receive 10 votes.

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  • bobkat
    bobkat Member Posts: 304
    edited March 2012

    1701jms, my husband literally just came from a pulmonary appt.  Last month a spot was discovered on his lung.  I asked when he got home if they were going to do a lung biopsy.  He handed me a brochure on the procedure they are planning. It is called "flexible bronchoscopy".  Seems to be less invasive but with same result.  Being collection of fluid and/or tissue. I can't obviously claim to know anything about it but maybe you could google it and then ask your onc?

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  • DebbieB11
    DebbieB11 Member Posts: 5
    edited March 2012

    I have a dear friend who leared on Jan 6, 2012 that she has BC bone mets.  She is in much pain.  It has affected her lower spine.  At times, the only way she can get relief from pain is if she is basically knocked out with meds.   No way to live.  She is so, so, so sad of course.  What can I say to her?   Like so many I feel so useless.  Does anyone know of permanent treatments to the spine?   She also got a bad case of shingles to top it all off.  She feels her doctors know how to treat cancer but not pain.  She does have an appt with a pain management ctr next week.  Any info, personal insights would be greatly appreciated.  What can I do????  say??????

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2012

    Hi Debbie sorry to hear about your friend.  Quite often when pain is bad for bone mets, palliative radiation is given.  If your friend has not had this it might be a good idea to ask her doc about it.

    As for what you can do/say, take your cues from your friend but let her know you are there for her any way she needs.

    Love n hugs.  Chrissy

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  • Chickadee
    Chickadee Member Posts: 4,467
    edited March 2012

    Debbie, I've had. A lot of pain in my spine and radiation did the trick. It's not a quick process, 20 sessions, mon-fri, about 20 minutes all told. Steroids and pain meds were also prescribed and finally the pain subsided.

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  • ma111
    ma111 Member Posts: 1,376
    edited March 2012

    Debbie,

    Maybe the pain clinic can set her up with some radiation to help with the pain. They will also give her some pain meds. After a while of being on them, she won't be so sleepy. Sometimes sleeping all the time is also a sign of depression. If the pain clinic is palliative care, probably is, they will also address depression.

    I agree with you that is no way to live.

    As far as what to say to her, sometimes being a good listener comes into play. Never tell her, oh don't talk like that. Don't give her false hope. Those are the 2 things that bother me the most that people do. We don't want to die, however we do realize we are.

    It takes someone that really cares to come to this board and ask how to help a friend. She is lucky to have you.

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  • DebbieB11
    DebbieB11 Member Posts: 5
    edited March 2012

    Thank you Chrissy, chicadee, and ma111 for responding.  Advice and suggestions I really needed.  Hopefully I can take what you so willingly give and help her.  You are awesome ppl to help me with this.  Thank you. 

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2012

    I posted early on to ask how to best help my friend who is now stage IV.  After she and I spoke on the phone we had coffee together.  So now that brings up another question and I need your advice.  I let her lead the conversation and all went well until she asked me how I was, scans etc.  I am a worrier and did not know how to answer her without sounding like I was whining.  I, too, have fears/anger but felt that they were insignificant compared to hers.  I would like some guidance in how to best handle this before our next meeting.  Thanks in advance for your insight.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2012

    Barbara be yourself and give her honest answers when she asks how you are.  She is also your friend and even though she is stage IV she still wants to be there for you.  Nothing is changed between you other than her cancer has progressed.  She is still the same person she is still the same friend...........please don't act or do as if her world has ended because it hasn't.  She will still want life to go on the same way it did before her diagnosis.  If you would have grumped to her before continue to do so.

    Love n hugs.  Chrissy

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  • ma111
    ma111 Member Posts: 1,376
    edited March 2012

    Barb,

    Answer questions as if there was nothing wrong with your friend. Some of my friends hide things from me so as to not have me worry about anything else. I would like to know everything that is going on in my friends life and be of some help if I can. It would also help me get my mind off myself. I also feel selfish not helping friends through things I used to help them with.

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  • reesie
    reesie Member Posts: 2,078
    edited March 2012

    Barbara, I have this problem with my sister. She used to tell me all her problems but now she doesn't want to burden me. I told her I haven't changed and I may have cancer but that doesn't mean your hip problem isn't real and a huge problem for you. Treat her like you used to (I still can't get my sister to do it but I know I'll never change her). My kids still treat me the same though.

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  • steelrose
    steelrose Member Posts: 3,798
    edited March 2012

    Barbara,

    I agree with the advice you've received wholeheartedly. And like ma said, anything that gets my mind off my own problems is good! I love it when my friends talk and feel comfortable discussing their problems, health and otherwise, and not compare them to my problems! Ahhh, to be normal again!

    Just be yourself and don't apologize.

    xoxo

    Rose. 

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  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2012

    chrissy, ma, reesie, and steelrose (I love that screen name) - thank you for your thoughtful advice; it does seem that you all agree.

    Previous to this last meeting, when she was stage III, she would tell me how she hated people whining to her about insignificant things.  I did understand her perspective as one time when my DH was complaining bitterly about a cold, I lashed out at him with, "So, do you want to trade places with me?"  My reluctance (to tell her my fears or anger) is that her problems physically, mentally, and emotionally are, in fact, more significant than mine.....at least at this point.  In every other way I treat her the same. 

    Again, thank you for taking the time to share your personal experiences with me; I send good thoughts to all of you.  Barbara

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  • Concernedfriend18
    Concernedfriend18 Member Posts: 2
    edited March 2012

    My really good friend has HER2+ breast cancer that was in 6 nodes. She had a double mastectomy and chemotherapy and radiation. She is now on Herceptin for the last few months and was just diagnosed with metastasis to the liver 5 lesions with the largest being 5cm. I think I got all of that correct. Does that automatically put her at stage IV? She was originally diagnosed with stage IIA I believe. Also, what can I do to help her? What can I say that will make a difference and be encouraging without being cliche?

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited March 2012

    Hi Concernedfriend in answer to your question is your friend now stage IV .......yes she is as the cancer has returned in a distant location from the breast. 

    The best thing you can do for her is just let her know that you are there and available for any help she may require she only needs to tell you what she wants you to do.  You could ask perhaps if she would like company when she goes for her medical appointments or treatment as well as things like house cleaning, grocery shopping picking up meds from the pharmacy or driving her where she needs to go if she doesn't feel up to it.  Be a shoulder for her to cry on as she will surely need one from time to time.

    As to what to say to encourage without being cliche? There are always the cliches which sometimes make us cringe but sometimes they are exactly what is needed......you need to use your judgement and as a true friend who knows her very well you will find ways to encourage gently when it is required.  The most important thing of all is please treat her as you did yesterday and the day before just because she has stage IV cancer does not change who she is so don't treat her differently.

    Love n hugs.  Chrissy

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  • chef127
    chef127 Member Posts: 891
    edited March 2012

    Chrissy,

    You are one in a million. Your advice and caring and knowledge seems to be right on. I'm going to ask my friends to read your posts so they can understand how to handle ALL of our situations.

    Thanx for being you. Invaluable and good. Your advice can help everyone.

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  • ma111
    ma111 Member Posts: 1,376
    edited March 2012

    Concerned friend,

    I agree with Crissy's advise. Being there, being a good listener and allowing her to cry. Not giving false hope is good. That is the thing that bothers me the most and makes me want to smack people and tell them to wake up.

    She is stage IV, sorry about that. There are treatments that can prolong her life and shrink the liver tumors. See if she wants your company for her next visit. Offer to take a note book to write down questions and answers.

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