Possible Stage 4

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  • blondelawyer
    blondelawyer Member Posts: 327
    edited September 2011

    I was diagnosed with IDC in April 2011.  At the time, my clinic staging estimate was Stage IIb.  I did neo-adjuvant chemo because my tumor was large (over 5 cm) and I am triple negative.  I had surgery about a month ago (BMX) and they removed 15 nodes from my right side and did SNB on my left.  One node came back positive--but was only a micromet.  Right after DX a PET scan found a suspicious spot on one of my left ribs.  It didn't necessary look like cancer because it was disperse. I had fallen several times a few weeks before during my first ever skiing trip, so we hoped that it was a bruised rib.  Well, after chemo and surgery, the spot is still there.  It a little brighter, but much the same.  The radioloigst who read my MRI said that it is a very real possibility that it is metastatic disease.  But, there isn't a good way to tell right now--the only way would be through a surgical biopsy and I am still trying to heal up enough from surgery to start radiation and chemo.  

    My oncologist says that the current treatment would be the same regardless of whether or not it is cancer, but I am completely freaking out.  I want to go talk to him and have him say something that will make me feel better about the whole thing, but I don't even know what else to ask at this point.  I'm 34 years old and lost my husband about 5 months before being dx.  So fighting this with a "cure" in mind has been hard enough.  I'm just not sure what I am going to do if it is Stage IV or how I am going to deal with all of this uncertainty.  

  • mari55
    mari55 Member Posts: 693
    edited September 2011

    The only way to really tell is a biopsy and it sounds like the area is too small for that.  Since it doesn't change your current therapy take a few deep breaths, don't label yourself yet and just keep going for monitoring. You can spend a lot of time asking yourself " what if" or you can take each day for what it is and enjoy as much as possible.  I suggest the latter.  It sounds like you have had a rough year and you don't need this additional stress.  I will be keeping you in my thoughts and hoping you won't be a member of our club -ever.

    Mari 

  • cookie97
    cookie97 Member Posts: 908
    edited September 2011

    First let me start by saying; slow down and take a deep breath. This may or may not be cancer, but if it is you can handle this. The worst part is the not knowing, and the waiting. There are many men and women including myself that have been exactly where you are. Also stay off the internet (medical research type stuff) it will drive you crazy.

    Many men and women are living productive and happy lives for years after a mets dx and with new treatments coming out everyday there is tons to be positive about.

    I see you have a blogspot titled Widowed in 2010, I am so sorry to read that. I will however check out the blog.

    You have obviously been through so much in your lifetime I pray that they find this to be just a bruise. If in fact it turns out not to be the case; we are all here for you.

    Please keep us apprised,

    Edie

  • apple
    apple Member Posts: 7,799
    edited September 2011

    what she said.. the 2nd poster.  It is easy to worry needlessly. hope you will be well.  It is encouraging that your lit up spot is at the site of an injury.

    I'm really sorry about your husband.. must be tough.

  • Suze35
    Suze35 Member Posts: 1,045
    edited September 2011

    blondelawyer - I am so sorry you are going through this fear. It can only be magnified by the grief you are still going through over the loss of your husband.



    I agree with Mari - right now, it is just a spot, and it really hasn't changed much. Will your doctor re-scan you anytime soon? I know PET scans can provide false readings, and can be sensitive to increased carbs in your system. No two tests are ever completely equal. My PET on Monday showed a possible spot on my rib, but my new MO thinks it is injury-related, and not cancer (and she is comparing this to obvious mets in my pelvis). Being a single spot is a better sign - TN tends to spread more diffusely.



    Unfortunately, we can't always change what will be. I know that has been the hardest thing for me to accept. Hang in there, I'm sending you positive thoughts.

  • reesie
    reesie Member Posts: 2,078
    edited September 2011

    I'm no expert but since your tumor shrank with chemo I would think any mets would have responded too. I think the activity seen in the PET is probably your rib healing from the injury. Since you can't biopsy I agree with your onc just watch it for now.



    I think all thaat's happened to you in the last year is making you worry (although I don't blame you).

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Blondelawyer-I have been thinking about you. Glad you posted. WHere is the spot on your rib? Is it close to where your breast lump was? Did your ro think you should biopsy it so you could possible get rads to that area also if it is cancer? I am well familiar with the freaking out thing. After my second ct scan the report read-response consistent with STAGE 4, as plain as day. I talked with both my oncologist and surgeon and they still say stage 3, but there are differing opinions as to where one of my positive internal mammary nodes is located, the person that read the ct thinks it is a mediastinum node, mo thinks not, that it is still local and stage 3. He says it is under the breast muscle inbetween ribs. What I take from it is that it is not operable either way, and that freaks me out! So stage 4, stage 3, doesn't really matter, what matters is if it responds to treatment, and that worries me. If by chance you do have a single met, and it has been found so early, maybe more chemo and rads can just get rid of that sucker! Have you started zometa? My doc put me on it as preventative, even though the studies seem to be contradictive, some say it helps, newer studies say it doesn't help, my doc has said he has seen good results of using it with his patients and I think he puts most on it.

    I hope you heal up soon, so you can start up treatment again. Are you getting any energy back from your chemo break, or has surgery and healing made you more tired? I look for you whenever I am at Swedish! Was there 2 times this week and am going tomorrow! Good thing the people are really nice there!

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    I also agree with what Reesie said:)

  • blondelawyer
    blondelawyer Member Posts: 327
    edited September 2011

    The plan is to use radiation in the area if i ever get to start that. It is on the opposite side as my tumor. Then did a PET and then an MRI. I will have more scans when I'm finished with radiation. I'm not sure when I will start radiation as my surgery incisions are not healing quick enough. I'm going in on Monday for a procedure to remove some tissue and reclose the gapping hole in my chest.



    Bak: when are you at Swedish next? I am starting back to multiple appointments, so we should get coffee!

  • blondelawyer
    blondelawyer Member Posts: 327
    edited September 2011

    I'm also wondering if I should try to apply for disability (which being stage 4 may make a difference). I'm not working and really could with my chemo brain.

  • Suze35
    Suze35 Member Posts: 1,045
    edited September 2011

    BL - Stage IV should be automatic disability. I applied as soon as I was diagnosed, and today talked with the social security office. They were very kind, and she said that it should not be an issue. I think in some cases, Srage IIIc are eligible. I would sayit is worth a shot. Keep in mind you have to wait 5 months from date of disability before receiving benefits - but I stopped working with my initial diagnosis and chemo, and that is what they are using for me.



    But I'm going to hold out hope that you are NOT Stage IV.

  • justjudie
    justjudie Member Posts: 3,397
    edited September 2011

    Hey Blondelwyer,



    So sorry to read your poat. You have bwen through hell for sure. I hope and pray they will find the rib os NOT mets. As others have said your onc's treatment plan sounds reasonable at this point. Just have them keep an eye on it. Wishing you the best. Please come to us for comfort. We really know what you are suffering. Gentle hugs to you.



    Judie

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Blondelawyer, I will be at swedish tomorrow. Doc appt 12:30 and then 2 oclock in the treatment center. I am a bit of a wreck waiting for results! I applied for ssdi at stage 3c.,  but looking on my last ct report it says stage 4. I am thinking of calling them and showing them that particular report, even though my doc says stage 3, I am so confused, but if I can use something bad to get something good! I have a very hard time working and have been barely making any money because of the hours I can work. I wonder what my new ct report is going to say tomorrow? I took extra ativan to help me sleep tonight, I am probably not making any sense!

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Sitting at Swedish getting chemo right now. How are you holding up Blondelawyer? Any news as to when you can start rads? I do think you should apply for ssdi, you can always choose to go back to work later, but you need to do whatever you can right now to make your life less stressful. How is the juicing going? I have been thinking of buying a juicer or a blender. I think I might start with a blender so I can make smoothies, then I will buy a blender.

  • blondelawyer
    blondelawyer Member Posts: 327
    edited September 2011

    Thanks everyone.  

    BAK:  Did you get your results?  I suggest talking to the social worker at Swedish if you have questions about disability.  I saw someone named Sandy (not about SSDI in particular though) and she seemed helpful.  I might make an appointment to see her about it.

    It will probably be at least a couple more weeks before I can start rads.  I have a big 'ol hole in my chest right now.  I go in on Monday and the surgeron is going to close it back up (and maybe take out some tissue--not sure).  He said that it should help speed things up.  Otherwise, he said that it would take months for this thing to heal.   

  • blondelawyer
    blondelawyer Member Posts: 327
    edited September 2011

    Oh, and juicing is good.  I actually really like green juice--who knew!  My favorite so far is kale, cucumber, and green apple.  I haven't actually made any smoothies yet, but I should try them.  Dr. Zucker (do you see him BAK?) is sending me to a nutritionist to see if there are some dietary things I can do to help speed healing too.

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    I haven't seen him. Still thinking I will buy a blender first.

    My ct results were good. The word "remission" even came out of my mo's mouth. I thought he said close to, but my hubby said he just said remission. Now my surgeon is having me do a breast and chest mri on Tuesday, so I hope it agrees with the ct!

    Do they have to put you completely out for the surgery?

    I am suppose to have an answer by october 4th for the ssdi. If I am denied, then I am not sure what to do . i know I can appeal. I did talk to Sylvia about the paperwork and she helped me out a bit.

  • ma111
    ma111 Member Posts: 1,376
    edited September 2011

    Blondelawyer,

    I noticed that you are from Seattle. There is some wonderful research there with breast cancer vaccines. More than anywhere else actually.

    So sorry you are being double whammed. That has to be so much harder with losing your husband. You are also so young.

    You could consider a second opinion, however, if it doesn't change treatment than you don't really need to. I sure will pray that you heal soon so you can start rads. The neoadjuntive chemo was the worst for me. Keep posting so we can help with side effects. What do they have you on? Taxotere/Carboplatin? My first oncologist didn't treat side effects as well as my 2nd. It's worth getting SE's treated!

  • nurseronda10
    nurseronda10 Member Posts: 209
    edited September 2011

    Blondelawyer, you may want to try Juven.  It is a powder that is mixed with water.   I had a postop infection and had to have debridement two weeks after mastectomy and then had a wound vac for three weeks.  Surgeon said I would have wound vac for at least 6-8 weeks.  I truly believe the Juven sped up the healing process plus I drank one protein shake a day.  My home health nurses could not believe how fast the wound filled in.  You can purchase it any drug store without a prescription.  Two weeks worth is around $60.  The dietician where I work orders it for patients with wounds to promote faster healing.  Hope this helps.  I know how depressing having a gaping hole in your chest can be. (((hugs)))

  • nurseronda10
    nurseronda10 Member Posts: 209
    edited September 2011

    Blondelawyer, you can learn more about it at juven.com 

  • blondelawyer
    blondelawyer Member Posts: 327
    edited September 2011

    Thanks everyone. I am going in tomorrow for the surgeon to reclose my incision and I am going to see my nathorpath about healing.  He recommended Juven for my husband at one point, so I know a little about it.

    With chemo, for neoadjuvant I had Taxol (but only did 3 doses because my tumor grew a bunch during that time) and then AC.  While I do radiation I will be on Xeloda and then after radiation I will add methotrexate and navelbine.  My MO was really good about helping me minimize and manage side effects.

    BAK:  So glad that your CT results were good.  I hope that the MRI confirms it too!  If you do get denied, I have a friend that has a non-profit that helps people with CF get disability benefits. I'm not sure if she would be available to help you, but I can certain ask.  She has had really good success with getting people benefits and she has volunteered to help me if I do apply. 

  • blondelawyer
    blondelawyer Member Posts: 327
    edited September 2011

    Bak:  If you want to try juicing you can blend it and then strain it.

  • bak94
    bak94 Member Posts: 1,846
    edited September 2011

    Thanks blondelawyer. That would be great if you ask you friend if she might help if I need to appeal or if she knows of someone else I could call. I should know within the next couple of weeks, unless they prolong the answer, which would not surprise me!

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