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  • goldengirl12
    goldengirl12 Member Posts: 9
    edited August 2012
    Hello, my sister is 4 1/2 months out from WBRT, treating multiple mets. She has 5 tumors remaining. we have a trip planned in a month and she really wants to dive again, I am getting scuba certified so I can go with her. I know her, and I know she will not ask doctors about the risks of diving with the brain mets. I am not on the HPAA form, so the doctors can't talk to me. Does anyone no what some possible risks or complications could occour because of the dive? She is doing great right now, working full time and very upbeat (30 years old). She has mentioned some symtoms that has me worried. Head-aches, she has been falling more, noted the left side of her bottom half is giving out on her and the right side of her top half.... I urgered her to tell her doctors and she said "what for" and clames she is just sleeping on stuff wrong. God bless her. Help. Advice?
  • journey4life
    journey4life Member Posts: 223
    edited August 2012

    Thanks so much for the advice. I have an appointment next week to have my port flushed. I will definitely talk to my Onc nurse about a scan and based on what she says, will probably seek another opinion. I will probably also mention it when I see the RO tomorrow.

    Do you know whether insurance will cover the second consultation?

  • superfoob
    superfoob Member Posts: 121
    edited August 2012

    BaldEagle: I agree with what others have said. I would ask my MO for a CT/PET Scan, especially since you had two positive lymphnodes.

    I had lymphnode involvement and had a CT/PET Scan before my treatment started. Found out I have liver involvement while waiting at the hospital to get my port installed.

    I know that my insurance covers second opinions (I got a second opinion from a BS just to verify what my BS said, whom I saw before I met my MO), you may want to call your insurance co. and ask. I am glad I did as I viewed it as a kind of "surgeon shopping". They both told me the same things but I connected with the first BS better than the second. It gave me more confidence to go forward with the team I selected.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited August 2012

    Hi Goldengirl you could always ask her doc as a hyperthetical question. I'm sure he would understand and not give anything away that he shouldn't.

    I'm no doctor but I would think diving deep may not be a good thing.



    Hope you can enjoy the trip.



    Love n hugs. Chrissy

  • journey4life
    journey4life Member Posts: 223
    edited August 2012

    Superfoob, are you BRCA 1 or 2? I see you had an oopherectomy which I will have at the same time I have implant surgery, probably a couple of months from now. 

    Based on what you all have written, with my risk factors (TN, BRCA1+, lymph node involvement, etc.), I think I'm a perfect candidate for some type of scan. Which one will give the most accurate results?

  • chrissyb
    chrissyb Member Posts: 11,438
    edited August 2012

    Baldeagle if you have to choose one ask for a CT/PET. This will also 'see' the bones as well as soft tissue. If you have a choice for another ask for a bone scan as well.



    Love n hugs. Chrissy

  • superfoob
    superfoob Member Posts: 121
    edited August 2012

    Baldeagle: No, I am not BRCA+. I don't have a family history of BC other than my Great Grandmother who got BC when she was in her mid-80's and seriously, who doesn't have something by then? She didn't die from BC. My only risk factor for BRCA testing was my Ashkenazi Jewish heritage.

    I had a robotic laprascopic bilaterial salpingo oopherectomy (say that 3x fast) with the DaVinci Robot Machine. The worst part of it was the gas they put in your belly so they can see everything inside more clearly. It lasted a couple of days and felt icky. Other than that, I have three tiny incisions, one on each side and one on my belly button. I asked if I could get my ovaries in a jar and they said no...that they slice and dice them to check them for occult disease (negative....yeah!).

    Personally, I think a combined PET/CT Scan is the way to go. I have had 5 or 6 now. The PET part shows "hot spots" (ie: SUV [sugar uptake values]) while the CT part correlates whether or not those "hot spots" match up with a solid tumor. For example, I had a scan done whilst in the midst of getting my Radiation. My foob, side and clavicle "lit up" with hot spots, but none of them correlated with tumors on the CT. Those hot spots were determined to be "metabolic brown fat" activity associated with post surgical healing or something to that effect. Nice to know we have "brown fat". Yummy. My next scan after that came back clear everywhere. Phew...a reprieve for now.

    Maybe that was all too much information or too long, but hey....I'm at work and don't feel like working. Tongue out

  • journey4life
    journey4life Member Posts: 223
    edited August 2012

    Super - it was neither too much nor too long, but rather very helpful. Congrats on your clear scan! If I have hot spots, I'll pray for some of that tasty brown fat. I'll let you know what (if anything) my RO says tomorrow. By the way, what is "The LBC"?

    Chrissy - sounds like CT/PET is the way to go! Thanks.

    Ladies, I admire your spunk, courage and knowledge. Thanks for sharing it with me! 

  • superfoob
    superfoob Member Posts: 121
    edited August 2012

    The LBC= Long Beach City which is now called Long Beach, CA.

  • Cynthia1962
    Cynthia1962 Member Posts: 236
    edited August 2012

    Baldeagle - Not to confuse the issue further, but tumor markers are reliable for 80% of women.  For those of us for whom it is effective, it's a good way to have an idea if treatment is working or not without having to get a lot of scans or wait for a symptom.  It's why I only get bone scans every 6 months unless we know by my tumor markers and symptoms that a tx isn't working and we want to have an idea of what the mets are doing.  It's just one more possible tool in an onc's arsenal.  In my opinion, to throw it away because it isn't effective in a minority of women without even seeing if a patient is in that minority is irresponsible.

    Good luck tomorrow!  I hope you get some answers.

  • C-squared
    C-squared Member Posts: 338
    edited August 2012

    Baldeagle & Cynthia~ It is my understanding that they DO use tumor markers more frequently in later stages as the reliability increases.  Certainly Baldeagle, you should have some scans for baseline information, if for nothing else.  My onc is not necessarily a true believer in running tests every three months (I am stage IIb) but I have had CTs (2), a PET, and a "baseline DEXA so far. 

    If you like your onc. you may not necessarily have to switch but a collaborative conversation may be beneficial.  If he/she still doesn't agree than you may need to look elsewhere.  The way I understand it, our oncologists will be with us forever.  I believe it's VERY important to have a good and trusting relaionship.  I am only 9 months out  from diagnosis and switched my oncologist after 5 months.  I am SO glad thatI did!!!

    Good Luck & keep us posted!   Smile

  • learnin
    learnin Member Posts: 37
    edited August 2012

    On the issue of what imaging tests women should have at diagnosis of breast cancer, discussed earlier in this thread:



    Studies have shown that imaging in early stage breast cancer, for the purposes of staging, does more harm than good and is no longer recommended. This refers to bone scans, CT, MRI and PET. The problem is a high rate of false positives, and a very low rate of mets, in early stage women - ie stage I, or stage II "without significant nodal involvement". So not recommended routinely. Obviously investigating symptoms may be different.



    I am happy to provide sources/references to those interested.



    Standards have changed in the last few years. We don't want women to feel they have been treated inappropriately, when their MO is in fact very current. In particular, I am concerned by how often posters on this site tell someone they should switch doctors. Often having a conversation with their doc and asking specific questions would be more fruitful, and help build their relationship with their doc rather than breaking it down.

  • journey4life
    journey4life Member Posts: 223
    edited August 2012

    Learnin - what is the definition of "significant nodal involvement"? Also, the scans wouldn't be for staging but rather for NED determination. Would that make a difference in the recommended protocols?

  • Megadotz
    Megadotz Member Posts: 13
    edited August 2012

    I think that learnin may be referring to the ASCO Clinical Guidelines for breast cancer follow up.  The guidelines are from 2006. 

  • lanagraves
    lanagraves Member Posts: 40
    edited August 2012

    Hi ladies. I had an appointment with my RO this morning and I am now terrified. I was dx'd in February, had a BMX, then AC and Taxol, now RADS, starting Tamox next month. My PET scan (after BMX, before chemo) was clear - no mets showing. In June, after starting Taxol, I began to have a tenderness in my rib area, not really pain, not even enough to take a tylenol. Just feels kinda bruised or sore (maybe not a good description). After a few weeks, my MO ordered rib detail x-rays. The x-rays showed a "possible" hairline fracture, but also a small sclerosis. I had no idea what that meant, but the MO said, just degenerative, no reason to worry at all. This morning, I saw my RO. He had seen the notes in the chart and asked if it ever resolved. I told no, it was about the same, not really bothersome but if I turn a certain way or poke on it, I can feel the tenderness. So he sent me for another rib detail. He said the spot is still the same, has not grown any, but is not going away, and because I have some tenderness, he wants to do further imaging after I finish RADS. So now I'm freaking out. A friend in my office, who had BC initially in 1998, and has essentially the same stats as me (Stage IIIA, ER/PR+, HER2-, 4 nodes, except hers was Grade 3) said she has a spot that has shown up exactly the same way each time she has been checked post-chemo in 1998 and is still tender to the touch if she turns a certain way or pokes on it somehow. Her MO told her it was a place where the chemo had collected in sort of a pocket and caused some damage to the bone. He says it is very common and nothing to worry about. That helps me some, but I'm still scared. I love the fact that my RO is cautious - wouldn't want him to be any other way, but I was not worried about this until he was. Any thoughts, anyone?

  • journey4life
    journey4life Member Posts: 223
    edited August 2012

    Mega - Has anything changed since 2006? To be sure, some progress has been made, no?

    I talked to RO today and he affirmed that my request for a scan is reasonable one. Given my risk factors, even though I've been dx "early stage", I have a valid concern about whether surgery, chemo and rads were effective. He cautioned that any number of cancer cells below billions would probably not be detected on a PET or CT scan, so cells could be present but not detectable. He thought it was rare that women dx with BC have scans at all until they are symptomatic. Based on what some of you have shared, I wonder if that statement is true.

    He also mentioned the NCCN recommendations and how they drive treatment providers. He thinks I should have a heart-to-heart talk with my MO (by the way, RO and MO know each other), explaining my reasons and my fears and my MO may change his mind.

    RO also said that I should wait a couple of months after the end of RADS to get any type of scan because there will probably be a false positive in the radiated areas. So now I have a couple of months to collect information to "prove" my case to my MO! Thanks, ladies 

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited August 2012

    lanagraves, are you doing rads or did you do rads?  That can cause rib fractures and pain, and of course, healing tiny fractures will show up positive on PET, CT, and bone scan.  Rib fractures usually heal up well, just can be a little painful for a few weeks if you go poking around on them!  Hope yo can relax a bit.

  • lanagraves
    lanagraves Member Posts: 40
    edited August 2012

    I am doing rads, but the pain started before I started rads. It actually began while I was taking Taxol.

  • journey4life
    journey4life Member Posts: 223
    edited August 2012

    Lana,

    I have some general chest wall/rib discomfort on the radiated side. RO tells me it is a normal SE. I thought it was my nerves "waking up" from my BMX surgery. I still don't have much feeling on either side although some has come back. I don't have the same kind of pain on the un-radiated side so he may be right about the radiated parts...I'm not sure this has helped you at all since your pain started before rads. Is the pain on the radiated side?

  • lanagraves
    lanagraves Member Posts: 40
    edited August 2012

    No. It is on the opposite side, in the lower ribs. It is a very small spot, and I can't even really call it painful. It is tender to the touch (if you poke pretty hard), and I can feel it if I sleep on that side. It's never been bad enough to even need a tylenol. I guess that's why I didn't think much of it.

  • Megadotz
    Megadotz Member Posts: 13
    edited August 2012

    Baldeagle,

    I checked the Cancer.Net What You Need to Know  page and the 2006  follow up guidelines are listed as current. There are some newer guidelines for bone modifying drugs for breast cancer.

    My MO has also said that they only do follow up scans if patients are symptomatic.  This was also part of the Survivor Treatment Plan that she put together for for me using the materials at http://journeyforward.org

    All the best

      

  • journey4life
    journey4life Member Posts: 223
    edited August 2012

    Mega,

    Thanks for the info - I'll definitely check it out. By the way, since I can't remember sh$t, have you had scans of any kind since your BC journey began?

    Also, what do you know about TNBC and Metformin?

  • Marijana
    Marijana Member Posts: 3
    edited August 2012

    I don't know how to say it.

    My dear wonderful woman. February last year, she was diagnosed with breast cancer, exactly within the year she got plearal metastases and lymphangitic carcinomatosis (lymph nodes in the lungs, which blocked with cancer cells. Tumor embolism in march (tumor cells that blog the aorta). In may metastases in the central nervous system and on May 28. she's dead. Her suffering I can not explain, it was huge and my loss is big. She was my first love since I was fourteen and she always will be. Together we have tree children (11, 7 and three) I'm from the Netherlands (so my bad english is therefore).

     By day I am busy with the children and the household, in the evening and night are the ghost. All those memories and images that occur in my head. I am als very lonely and I'll do this kind of crazy things than (this piece of writing).

     Recognize the stages that you go through, give you all the best hope I have.

     Live now without fear, because fear does not change fate, but it changed youw way of live. Not everyone goes, my wife was unique in everything. No one as strong as she, no one so special for me. 

     Can somebody help me to unsubscribe this account?  

  • Tillycat
    Tillycat Member Posts: 57
    edited August 2012

    I am so sad for you and your children.  There are probably no words that can make things easier for you or to help you deal with what has happened.

    I am glad that your children have such a loving father to be with them and care for them, they must miss her terribly as well.   They need you to be there for them.  

    You do need to look after them but you need to look after yourself too.  Do you have any other family who could come to visit and you would be comfortable spending some time with?  Are their any support groups you could go to?  

    You sound so sad (of course you are sad how could you not be) it makes me want to cry for you, it also makes me realise how my husband will feel when I am gone.  I don't want him to be lonely and sad in the evenings but I don't know how to plan to make it better for him.

    Please don't unsubscribe to this forum just yet - you could start a new thread in the stage iv or 'in memory' sections and introduce yourself,  I think you will get some caring, helpful responses.  They won't make the pain go away but you might find something for you in there

    Sending gentle hugs your way

    Mxx

  • learnin
    learnin Member Posts: 37
    edited August 2012

    Bald eagle - I was getting my info from UpToDate.com - a source widely used by health professionals throughout North America, or even the world. It summarizes research, guidelines, and consensus about most areas of medicine, complete with references and abstracts. If you are interested, I can send you the most relevant article - PM me with your email address.



    The other source, as you mentioned, is the NCCN guidelines. For imaging, both at baseline and follow up of stage I - IIb breast cancer - if I interpret them correctly, they recommend only symptoms, abnormal blood work, abnormal physical findings etc. You can download a free NCCN app for iPhone with all the NCCN guidelines from the app store. You have to register with NCCN, but it is free.



    Having said that, sometimes a doc will agree to do extra testing just because you want it for reassurance, provided you understand the risks of false positives. Since you are triple negative, I get that.



    So do your homework, and then if you still want something, you will be able to have a well prepared conversation with your doc. Keep us posted.

  • Megadotz
    Megadotz Member Posts: 13
    edited August 2012

    Baldeagle,

     My surgeon ordered at PET/CT and MRI prior  to my lumpectomy.  I haven't repeated eiterh since then.

    I also had an echocardiogram prior to chemo (Adriamycin can have heart issues). My DEXA was update at diagnosis and I've had two since.

     I don't have any infor on TNBC or Metaformin.  You might take a look at the materials at Cancercare or the Triple Negative Breast Cancer Foundation

  • Lady_Miz
    Lady_Miz Member Posts: 58
    edited August 2012

    Hop on over to the "Calling all TNS" thread as we ALL have TNBC over there & there is tons of information to be found, specific to TNBC. Bright blessings to you!

  • paty
    paty Member Posts: 8
    edited August 2012

    I had 30 days of radiation at the end of 2009 following 2 lumpectomies, lymph node dissection and chemo. This Spring my cancer came back to my lymph nodes and there are a few red, raised areas on the breast/chest area where I had the radiation. Even with my new treatments, the areas seem to be getting bigger. My dr said it could be tumor. I am wondering if it came from the radiation and is not from the breast cancer. My dr doesn't want me to have a biopsy here because she said it may not heal well due to the skin having been irradiated.  Has anyone heard of skin tumors from breast cancer?

  • Linda-n3
    Linda-n3 Member Posts: 1,713
    edited August 2012

    Paty, yes, breast cancer can recur in the skin, and it especially likes the scars from previous surgery. They can be removed for local control according to my BS. She seemed pretty nonchalant about it (but then again, she has been pretty nonchalant since the beginning - it's not HER body she's chopping on!) but didn't seem to suggest this is progression, but merely local recurrence.

  • paty
    paty Member Posts: 8
    edited August 2012

    Linda-n3, I don't think our dr's understand that a lumpectomy can look bad because they feel they are removing the cancer and leaving the breast. My lumpectomy has left me with a deformed breast and i almost wish i went for the mastectomy. Maybe i wouldn't have the skin tumors there! It will be more of a mess if they decide to just remove the tumors.