If you are not Stage IV but have questions, you may post here
Comments
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Lmflynn,
Take a deep breath and try to relax. Our minds automatically fly to the worst! You have gone to your doctor and had some scans and x-rays done, that is very good and proactive. An x-ray CAN detect mets, and it did NOT. Hang onto that thought. Mets don't come and go, lessen with movement/advil/or really anything, they are just there. I presume your MO did bloodwork and all was ok? Try to remember that they are conditioned for the possibility of it coming back, and they do look for it when you have a complaint that could be either mets or arthritic changes. If you still are anxious, ask for a bone scan or MRI just to be sure, your MO will not order one if they are certain it is nothing to worry about.
Try to relax your mind, it will all be ok.
((hugs))
Sue
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Lmflynn I'm no doctor but to me it does not sound like mets but more like arthritis as well as the deterioration of your spine due to osteoporosis. Has your doc suggested some form of treatment for it? If not, I would ask what he suggests in regards to keeping your spine a strong as possible.
I know that your mind will automatically take you to the dark place but worrying over something that has not happened really is a waste of precious time.
It can be difficult to let go of the fear that seems to follow us but for me, I found that just accepting that I had absolutely no control when it came to this cancer enables me to say and mean with all my heart,..............what will be will be and I do not want to waste my life worrying about what is coming next. I do what I can by taking the meds that are prescribed for me and for the rest I let it go as I really do not have time to continually ponder on the possibilities.
Love n hugs. Chrissy
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Thanks Chrissy and Sue...it helps to hear from you. I really don't know myself right now. They told me they would order an MRI if I want one....which I'm sure I'll do ...
For the osteo ...just calcium and Vit D... My Vit D level was low normal, and I'm lactose intolerant .... Lack of calcium in my life, chemo and early chemo- pause has caught up no doubt ...but of course in the very back of my mind ...I'm thinking thin bones could be cancerous bones....
Like I said I am a crazy person right now. :-) .. Hugs back, Lisa0 -
Lisa I'm glad he has suggested the Vit D and calcium. Try adding in Magnesium as well as the three work together for optimum performance.
If your mind will not rest until you have an MRI then do it. It will allow you to move on and begin to enjoy your life rather than pondering in the dark place. Come, join us in the light! You will love it here!
Love n hugs. Chrissy
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Hi to everyone. I was so happy to find this topic. I will try and make this as short as possible. About 2 months ago I started to have lymphadema. Did about 3 weeks of wrapping and now I am just in compression classII. While doing MLD one day about 2 weeks ago I find a lump on the part of your arm that curves into the breast. Pretty much on the surface. I asked my LE gal about it and she said not a bad idea to see my MO. In the mean time I found another lump in my axilla area. So saw MO last Thursday and he said need them removed. Of course could be radiation scar tissue as I had a bad reaction to rads. So after back and forth finally saw the breast surgeon and we found another lumph in the axilla. The first one I found he said no worries, it is in the skin and probably nothing. He said one of the lumps is very deep. He said they do feel a little hard to be lymph nodes but no guarantees it is benign.
I am having them removed on Tuesday the 15th.
Anyone have thoughts or input. What should I be searching for? My first diagnosis the one positive lymph node I had was 6cm and I did have a positive lymph node under my supraclavicle. Did my TCH, double MX, rads and recon. I have had cellulitis that put me in the hospital 5days now lymphedema.
Thanks everyone, I appreciate any thoughts
I admire everyone on these boards so much. True inspiration and nice to see the rants too because we all have bad days.0 -
Hi Allison, it is very possible that the lumps you are feeling are scar tissue but it's good that your BS is going to take them out and I'm presuming here, that he will get a path report on them. I know your mind is going to mets but it's probably better to find out exactly with what you are dealing before looking further.
Presuming that they are all benign, you need not go any further with your search but if not, we are definitely here for you and ready to share our experience. Please let us know the outcome and I wish you well. Stay busy over the next few days and try to relax those worry lines a little.
Love n hugs. Chrissy
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I was just diagnosed with a local recurrence to the breast 3 years after my mastectomy, 3.5 years after my diagnosis, lumpectomy, and AC/Taxol. I did not have rads. I have a breast MRI today, going to schedule surgery ASAP, and my onc wants a PET scan
Being TNBC I'm always looking for posts by the TNBC folks and there aren't a lot, especially on Stage IV. My questions will be frank and to the point...
1. What is the longest that you know of that a Stage IV TNBC patient has lived with treatment?
2. What is the longest that you know of that a Stage IV TNBC patient has lived withOUT treatment?
There are stats all over the web, I know, all different, some ancient. I want to hear from the women of these boards who live this current reality, as this will affect my future decisions.
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LMflynn, I also have osteopenia in my spine. I am 48 and, apart from the stupid cancer, active and healthy, slender and in fairly good shape. Like you I am lactose intolerant and rarely drank milk at any point in my life.
The thought of mets does scare the living bejeepers out of me every so often. Given my stage 3 DX, I figure mets are in my future unless I get run over by a bus first. But at this point I choose to enjoy my life. If I feel well and can do the things `i want to do, then that is good enough for now. When the mets show up, if they do, I will deal with them then.0 -
lmflynn - what medication are you on for the cancer? Some of the AI's are wicked hard on bone and are known to increase bone pain. Bone loss does not equal bone cancer, but bone loss/arthritis certainly can equal pain. I get a lot of back pain and have had my fair share of freaking out that I've got mets - but haven't actually had them - just had the freak out.
Try not to dwell too much on the bad "could be's". Whatever life we all have left needs to be mostly fun - not just worry and fear.
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I've followed this thread since its inception. It's creation was a gift of grace and generosity beyond words. And I thank Chrissy and the Stage IV forum for allowing us here at all.
Sometimes, one's questions are best answered by personal experience and guidance not found in healthcare system. I am there now. Since late Feb., I have had progressive tightness and soreness along the left side of my throat. My onc's NP had mentioned a bumpy hardness there at my Dec. checkup and decided they were bones so noticable because of my low body weight. I felt fine then and wasn't worried. But now the throat tightness and upper torso aches around my shoulder blades are noticable daily. My gut tells me I am about to enter a room with no exit....like it told me in 2009 the new lump was not just another cyst. I can't call the onc...I can't pickup the phone to do that. My next appt is late May for 6 mth check and breast MRI. The cancer ctr. is 4 hrs away and I know they need heads-up to schedule any testing for the symptoms. Every night, I tell myself I'll do it 1st thing the next morning but then I choose 1 more day in my familiar world.
My fear and sense of loss is mirrored by the fact we brought my Mom home last week with hospice care after a horrendous emergency hospitalization for diabetes-induced kidney failure. My brother called me and DH and I drove 13 hours from vacation, hoping to get to her bedside in time. Though making decisions has been hard and not without controversy, my sibs and I are committed to holding her hand and honoring her desire to die at home. Time is short and I want to be there for her as much as possible.
I need guidance to deal with this fear about my own situation and to find my way forward. I know I'm different from many on BCO who feel safest calling the onc early about new symptoms...I experience making that call as jumping into the abyss. Please tell me if you've had this experience. Thank you for taking the time to read this.
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Octobergirl - So sorry that you are having to deal with so much right now. It is wonderful that you are able to be with your Mom at this time. I pray that she is at peace and pain free.
Instead of calling the onc's office, is it possible to go through your family dr for any testing that might help to explain your symptoms. The cancer center I go to is 2.5 hrs away and going to my family dr is much quicker. She is also very understanding and caring and we have a great relationship. I don't hesitate to call her whereas sometimes I would put off calling the onc.
Sending you ((hugs)) and best wishes.
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Minxie, I happened on this board today probably to give you encouragement. I go for treatment at Univ of Michigan so meet a unique blend of people. I met 2 women with TNBC Stage 4 - both had been given less than 6 months to live, then came to U of M.
One women, has been alive 9 yrs, and the other is 19 yrs!!! Isn't that amazing? They both had treatment, and both told me NEVER GIVE UP no matter what. There lives have been greatly blessed during their treatment and survival times!
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Denise, your post regarding the ladies who are stage IV metsters and have been alive for 9 and 19 years, respectively, really does give me hope - and I'm sure other metsters. Thank you.
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Minxia, That question really cannot be answered. There are a lot of women who beat the odds of the stats and some that don't.
Lmflynn, We cannot stop fear or concern. It is what has us go to the doctor and see if anything is wrong or could be done about a problem we have. Sorry you are having arthritis interfering with you running.
Allison, Sorry to hear you need more surgery. I don't think you really need to be searching for anything. Sounds like your doctors are doing the correct thing and have you on the surgery schedule in a timely manner. I also have had cellulitis in the arm requiring hospitalization, that sucks.
October, That's a hard one to answer. I am going to answer with another question. Is it that you know your outcome will not change if you call the onc early? I ask this because a lot of my family would not do chemo the second time around.
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so I saw my onc. on Wed. I told him of all of the pains I have been having, go for chest CT, Ab Ct and bone scane on monday and see him again on Fri. leave on Sat for my son's graduation from west point. Really hoping that I don't get bad new on Fri. because if I do, I will have to keep it to myself for a week, I won't ruin my son's graduation with it, then he gets married the week after we get home, so really I will not tell anyone for two weeks if I become stage 4
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To djfrro
(((((Hugs))))) to you.0 -
To Stage IV heros, what would you have done differently? What advice can you give those of us who are just starting down this road. Did you delay treatment because of fear, because of not believing the doctors or any kind of distrust?
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Hi and thank you for this thread. I often read the Stage IV threads for information and wisdom, but obviously, have not ever posted anything out of respect. I do have one burning question though...
I had a large, aggressive tumor (5cm+ & grade 3), but no nodal involvement. I had my MX last September and have completed chemo (TAC X 6) and am almost done with 36 rads tx. I will begin a 5 yr Tamoxifen regimen in about 6 weeks. I feel like I've done all I can ~ we took the most aggressive route possible, except that I did not do a BMX.
How many of you were initially diagnosed with early stage cancer, that reoccurred as stage IV later? Also, how aggressively did you treat your early stage cancer? I am not a fearful person as a rule. I have strong faith and approach my life in a very pragmatic manner. However, it has rocked my world to see how many stage IV's began with dx's just like mine.
Thanks in advance,
SAN
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Jumping onto Sandylands post, I see have seen several women who are stage IV but no node involvement? Is that common?
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San and Mardi, I was originally dx'd grade 2, stage 2 with no node involvement and now I'm stage IV. I had a mastectomy and attempted chemo but was told by the onc that he refused to give me any more as it was literally killing me. Then we tried Tamoxifen which put me in hospital after three weeks with a suspected heart attack. We tried Fareston and after one week I was heading the way I did with Tamoxifen so we quit that one. Not only did we quit that one but we quit treatment all together as there was nothing more they could offer me that wasn't going to do the same thing. I have a very sensitive system and many meds just don't agree with me. I changed my living habits but always knew that for me it was just a matter of time before it came back and I was stage IV. I was right. I was late going in for my 5 year check up by 5 months and when I did we discovered that I had it in my arm.
If you are as agressive as possible in the beginning I think you have as good a chance as anyone of not getting it back. We all know that we are never cured so all we can do is what is recommended and hope it was enough and when treatment is finished remember to live you life and enjoy it to the fullest. Never worry about possibilities as they only temper your enjoyment of life.
Love n hugs to both of you. Chrissy
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Do you know of any stage IV ladies who have asked NOT to be called angels? I'm wondering about non-religious people squirming a bit at the notion.
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djffro, I can understand not wanting to ruin your son's graduation or wedding. You are very strong!
Infobabe, Everything went so fast my head was spinning. Since I cannot change the past I don't go there. Most oncologist do treat the patient with the latest recommendations. Is there a particular issue you would like advise on?
Mardi/Sandy, I was late stage to start with with no lump. I found nodes in my axillary, but I do have Inflammatory breast cancer. Some people's cancer spreads in the vascular system and decides to stay in the liver or something. It seems as you did what you could. This can be a nasty disease that does what it wants to and we can not control it.
Gilly, There are some atheists here. They try not to lash out when we say, I will pray for you. Personally I believe in God.
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Thanks for the information. What type of symptoms do you look for for liver involvement? I had severe vertigo for about 4 months before being diagnosed with BC. When I was diagnosed, I didn't tell my docs for awhile because I was so convinced they would find my cancer had spread to my brain. When I finally did mention it, I was getting a brain MRI like the next day. Surprisingly, my brain was totally clear and the vertigo left immediately after my UMX. Weird, right? I am so grateful it worked out that way, but ever since then, I've been "aware" of seemingly unrelated symptoms.
I've learned (mostly from you Stage IV ladies) how bone and lung mets often present, but I haven't heard anything about which symptoms are evident for liver mets.
SAN
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I just need some advice about my condition at the moment.
I have had a continual dull ache just below my sternum and radiating around my middle section to my lower back to just below my shoulder blades. I have also had awful bloating at times and a tender upper tummy. Sometimes it aches so much. I would say that pain is getting worse / more continual but at times is worse than others. At the moment it is not too bad. A blood test shows that I have abnormal pancreatic enzymres and liver enzymes so the doctor ordered an urgent ultasound and that was fine. No probllem with major organs that they could tell. That was frustrating in one way because apparently I have a 'textbook' case of gallstones! So, they were expecting to find something wrong with my gallbladder - but nothing. So, given my history, they are referring me for a CT / MRI. I was diagnosed with TN BC in Sep 2009 which did not respond to chemo so I just had four rounds of chemo and then lumpectomy on Jan 2010 followed by rads. I was diagnosed with contralateral BC in Oct 2011 (but at an earier stage to my first BC). I had a clean PET scan in Oct 2011. At both times I had a SNB and was node negative. I have lost nearly half a stone in weight in nearly a week but for two reasons; eating has been painful and they have asked me to cut out all fat from my diet as they thought my abnormal pancreatic enzymes were caused by gallstones which in turn are made worse by fat. I eat a good diet usually though and I do not drink any alcohol whatsoever. Any ideas?
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Sandy, Some women have no symptoms with liver involvement. Some the liver enzymes go up and others have upper right abdominal pain.
Karen, Fiber would be about the only thing I can think of. Sorry can't help.
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Sandyland - There is only one thing i would have changed in hindsight - I was taking tamox but then I had a hyst/ooph, and I would have asked to be changed to an AI instead of tamox. Maybet that would have prevented the return, I am not sure. It was something that was kind of said as an aside when I went for an second opinion, which actually makes sense now.
Good luck
Amy
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Infobabe,
I threw everything at my cancer at initial dx - mx, chemo, rads, Tamox. It came back, so I went with more rads, ooph, Arimidex. It came back again and now I'm doing more chemo.
I'm not a hero; I have no choice about my situation.
I would not have done anything differently; I did everything I could. I cannot give you advice; I don't know your circumstances. I have never delayed any tx for any reason and am surprised that you seem to think any of us have: You appear to be implying that we got to Stage IV by doing something wrong or not following our medics' recommendations.
You must know by now that cancer is just one sneaky so-and-so and this is just a crap shoot... And if we knew why our cancers came back, I'm pretty sure our oncs would, so we could all have avoided being where we are.
Good luck to you.0 -
I asked because there is a woman on this web site who through a biopsy was diognosed with Stage 0, Grade 3 hormone negative. She is deciding to do nothing further, not even a lumectomy. Scores of us have been trying to get to go for more treatment but she intends to do Active Survelience. Her surgeon will not cooperate with this approach telling her she could die with a brain met.
She keeps wanting testimony from others who did nothing about DCIS and had a good outcome because DCIS is not malignant. No one is responding to this. I just wondered if anyone did delay and had not a good outcome. Some agument to pursuade her to reverse her thinking on this. She refuses to acknowlege the dangerousness of doing nothing with a negative hormone status.
I was uncomfortable with the word hero too. I just didn't want to say victim. I think active cancer patients are very brave.
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Gilly, I wouldn't be bothered by the religious part of it, but the title of angel is normally given to a person who has passed...I really really don't want to be an angel any time soon.
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Infobab, That is very nice of you to be concerned about her, however, you cannot talk someone into something they do not want. You did your best, go forward.
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