If you are not Stage IV but have questions, you may post here
Comments
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Hi, WannaCruiz. First of all, please accept my deep regret that your DD is having to go through this and at such a young age. Having you to turn to must be a real comfort. It sounds as if your DD's medical team is terrific and seeing positive results from the chemo is wonderful.
I cannot answer specific questions regarding her IBC or chemo but hopefully someone will come along soon with that expertise. Regarding the reconstruction, it sounds to me that you have not yet consulted with the plastic surgeon? S/he should definitely have an opinion about the timing of the reconstruction and will hopefully consult with her breast surgeon and MO regarding their thoughts on any potential radiation to the breast skin area.
Beyond that very important conversation, I would say that anything that makes your DD feel as good about herself as possible is never crazy to consider. With luck, she will be here for a very long time and feeling attractive is a morale boost for anyone. Just make sure to have all the necessary conversations around possible complications with future treatments in mind, and consider her stamina, ability to ward off potential (but hopefully unlikely) infections, and ability to cope with any pain.
You might want to read some in the reconstruction threads, as well. If the PS wants to use expanders, there may be some pain issues you will want to be aware of and discuss.
Please keep us posted and let your DD know we will be thinking about her and sending hugs to you both.0 -
Thanks Ysa. Its certainly the hardest thing I've done in my life, having to watch her go through this. I would take it all from her if i could, but all i can do is be there at every treatment and appointment to suport her.
Today the breast surgeon gave my daughter a referral to a plastic surgeon that she works closely with to discuss the options for reconstruction. I'm trying hard not to direct her decision, but want to make sure we are talking through all pros & cons so she (hopefully) can come to a decision that she is confident in. I found a thread that Beesie made laying out what to consider between lumpectomy, uni-MX and bi-MX that i'll print out for her. Despite being bald, with no eyelashes or eyebrows, she's very upbeat and feeling very strong right now, so she wants to get this surgery scheduled and behind her so she can recover, enjoy some summer, and get back to work. I'm just trying to make sure we consider everything, and don't make too hasty of a decision.0 -
Hi WannaCruize, welcome. So sorry that your DD (dear daughter) needs to join the club that no one wants to belong. She sure has got some major decisions to make in the near future and reading all you can will surely help a lot. Using the search engine at the top of the page can direct you easily and quickly to areas that will be pertinent to her and where she is in her journey.
I'm a bone master girl so I understand where your DD is at but take it from me, it is very possible to respond well to the meds and be able to live well for a long time.
The docs usually like to keep the radiation until they really need to use it to help with bone pain due to the mets so if your doc has suggested this, for a stage IV that is quite normal.
Please come here often and do le us know how your DD is getting on.
Love n hugs to both of you. Chrissy0 -
WannaCruize, I am so sorry your DD has to go through all this, and I think you are a wonderful mother to help her out with the information overload. It is also wonderful that she trusts you enough to help with information-gathering and maybe even decision-making.
I had initially asked about immediate reconstruction after BMX, but the PS and BS kicked it back and forth, neither wanting to make the decision, and so I delayed. Ultimately, I am very glad that I did delay the decision because I developed a horrible infection that took a couple months to clear up, and then I have had pain issues from that ever since. I eventually decided I did not want any part of the multiple procedures, pain, and increased risk from reconstruction, and I also talked with a lot of women who reminded me that reconstructed breasts have no feeling, there is no nipple sensation - it is only for looks - so have decided not to do it. However, according the the PS, it is available to me later if I want. I am really glad I took more time to consider the options, because just treating the cancer itself involves so many very difficult decisions. I thought I would feel better if I woke up from BMX and had curves, but as it turns out, it really didn't make any difference in my overall emotional status. As time goes on, I don't even use prostheses and am becoming more comfortable with my body just as it is. I just wanted to let you know that reconstruction is NOT a life/death decision, but cancer treatment IS. Reconstruction decisions can be delayed until your DD can really think through the options, rather than being rushed into a series of procedures that many people ASSUME every mastectomy patient would want. And if she wants reconstruction after considering ALL options, she will be much happier with that decision than if she is rushed into it and has difficulties.
Much lovingkindness to you both, may you be free from anxiety, may you have peace.
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I was wondering if anyone here has experience with cyberknife procedures in the brain. A friend of mine was operated for brain cancer (not BC related). They got the tumor, but did not get clean margins, and I am trying to find out of radiosurgery/cyberknife might be used to "clean up" the margins.
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Momine, no experience with cyberknife but there is a thread that deals with this question. Just do a search and all pertinent threads should give you your answers.
Hoping your friend does well.
Love n hugs. Chrissy
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I had a negative bone scan six months ago but still have shoulder pain when I lift my arm past my shoulder. My neck pain seems to be resolving but I do excercises at least four days a week to keep it flexible. These pains have only ocurred after an auto accident when I was whiplashed from behind about nine months ago. Recent X-rays from my cervical spine say marked narrowing of C5/6 and C6/7 disc spaces along with osteophytes and bony foraminal encroachment, more marked on the right side. The opinion provided by the lab is marked degenerative change lower cervical spine. I too wonder if I might be developing cancer in spine. I am concerned. Should I be worried?
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Hi Damazon I understand that your thoughts would go to mets but it really sounds like degenerative disease and arthritis caused by injury. I wouldn't spend too much energy on worrying about it but I would be aware of any changes and make sure I got them checked out.
Love n hugs. Chrissy0 -
Thanks Kayb,
Chrissyb does a wonderful job here and always responds. Others of us support where we can.
It's got pretty intense on the other thread but here anyone is welcome to ask questions about stage 4 or concerns about becoming stage 4 and it's ok.
We are just normal women getting on and living our lives as best we can.
Thanks for the acknowledgement and feel welcome to join in any discussion here.
Moira
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I would also like to add my thanks for the time and caring that chrissyb and co give us. I often lurk on this thread and have always found it extremely informative and helpful. Now....just a quick question! I have had shortness of breath for past 8 months, and now have some rib/back pain. Had my (first) CT scan last week and results show no evidence of mets. Great news, but just wondering how accurate this type of scan is? My BS said that if SOB still there in month or so that she wants me to have bone scan. R these better than CT's? I know that it is very unlikely that I have developed mets, due to being node negative, but this SOB is really annoying and a bit worrying! Any advice appreciated. Thanks for your time.
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Rowan, just a quick question back at you, did you have rads? Why I ask is that rads can cause lung damage and give you SOB. A bone scan is totally different to a CT. A bone scan is nuclear and only shows your bones where as a CT will show very clearly your soft tissue. The CT will show bone as well but not as clearly as a bone scan.
Hopefully all scans will be clear.
Love n hugs. Chrissy0 -
Thanks chrissy for your quick response. No, I declined rads and chose BMX instead. Also declined tamoxifen due to side effects. I decided the risks outweighed the benefits...hope I'm right! I just feel so tired with this breathing issue; always yawning as I try and get enough air in. I read up on bone scans and they sound quite long and involved. I just want to get to the bottom of it. I just feel that all is not right. I felt great after BMX and chemo finished for about a year afterwards, then quite suddenly the SOB started.
I think I may just leave it for a few months and see if it clears up.
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Rowan, a bone scan takes a while purely because they need to inject you with a radioactive isotope and wait for it be taken up by your bones. The wait is two to three hours then the scan itself is about fifteen minutes so no real big deal. It just sounds long and involved.
I hear you on the 'something is not right' feeling. It's extraordinary how we learn to listen to our bodies and hear what they tell us. If there was something in your lungs, the CT should have shown it so I am assuming the doc is doing the bone scan to make sure there is nothing there either. I hear of a lot of women having SOB but it mau have nothing to do with BC. Have you had your heart checked? as SOB can be a tell for a heart problem as well.
Hoping you get to the bottom of all this soon.
Love n hugs. Chrissy0 -
Hi Chrissy, yes I went to see cardiologist in January. He did ECG that showed a bit of damage (from chemo) to my left ventricle, but doesn't think it would be the reason for the SOB. Oh, I don't know, it's all so frustrating! Thank you for your thoughts, and I may post again in a while if breathing no better. Sorry, one last question, did you have symptoms with your mets? Are they bone mets? Sorry, you have probably posted that info before, but I haven't stumbled upon it yet.
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Happy to answer you Rowan. My mets are bone and I had a lot of pain associated with them and still do but pain meds keep me going. The major one is to my humerus which was so bad it had to be pinned before any treatment in order to stabilise and avoid shattering. I also suffer SOB and have been dx'd with COPD so I know how you feel.
Please do let us know how you get on and if you get to the bottom of your symptoms.
Love n hugs. Chrissy0 -
Thanks Chrissy, I will look for it.
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Rowan, you had 2 chemos that can damage both heart AND lungs. Is the cardiologist you saw really up to date on chemo-induced heart damage? I actually saw a cardiologist BEFORE chemo and there is evidence that adriamycin can cause heart damage with the very first dose, and the symptoms can appear soon or late, even years later, so I would not just "blow this off" as a possible cause. Anemia can cause fatigue and shortness of breath, and chemo can damage bone marrow which may also show up much later afer chemo is long done. Pulmonary fibrosis is from lung damage that can occur with either of those drugs as well. The problem is that the chemo can cause immediate and delayed effects, and the longer the delay between chemo and symptoms, the more likely it is that your health care provider will fail to link the two. Are you receiving care at a major cancer center? If so, ask to see a cardiologist who specializes in chemo heart problems, as well as a lung specialist ... most general internists and family physicians just do not have the training in this, do not see it often enough to recognize it - you need to NOT be a quiet "good" patient right now - you need answers, and you can start with the oncologist that gave you the chemo for referrals.
Wishing you the best and hoping you can find a cause AND treatment for your symptoms! Sending you lovingkindness.
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Thanks to Chrissy and all others for taking the time to help those of us who are not stage 4. I have a dumb quetion. When I was diagnosed as stage 3, I basically accepted the fact that I will die of breast cancer. I dont know when but I know it will progress. Is this true? Is there anybody that has stayed in remission for 30-40 years when diagnosed in their 40's? I have a friend who stayed in remission for 25 years but I really dont know of anyone that is cured. Can it really be said that you are cured? I also know that people progress from stage 0 to stage 4 so stages dont really matter. I dont mean to upset anyone but I really need someone from a stage 4 group to help me understand if this is true. I have done all my treatments but I haven't really made any lifestyle changes because I want to live the next 20 years happy. Am I wrong in thinking that I will never be cured and it will come back eventually. My mo wont give me a life expectancy. Dont get me wrong I dont think about it or worry about it. I am going on with my life as if nothing has happened. But now I give in a lot more to my grandbaby whom I adopted. I dont sweat the small stuff. If I want a drink I drink it and if I want a cigarette I smoke it. I dont believe God gave me my grandchild to raise just to take me out of her life so soon but I also believe that there is no cure. Does anyone know of someone being cured?
Oh and another question is after you have a bmx with reconstruction is it possible to get a chest wall reccurence? How do you know if it comes back there? We dont get mammos right?
I realize these are stupid questions and could upset some people so I am thankful that you have a thread that I can ask them in. I truly dont want to aggravate anyone but this is on my heart and mind. Thanks and hugs to all.
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Meimcbee, my own SIL was Dx 35 years ago......she had a BMX and no other treatment. She is still my SIL and very much alive, she was 34 at dx.
To answer your other question, yes it can come back on your chest wall but if you are having regular check ups, any thing new should be picked up.
Please put your mind at ease and enjoy your grand daughter.
Love n hugs. Chrissy0 -
Hi Linda, thanks so much for the advice. My first thought was also cardiotoxicity as possible (probable?) cause for my symptoms. I am not under the care of any Cancer centre; just have 6 monthly check-ups with BS (I think this is standard protocol here in New Zealand). My onc doesn't want to see me again unless problems arise. He is under the opinion (like many doctors) that it doesn't matter if mets are caught early or late, the treatment will be the same. I still have trouble getting my head around that.....I may just "self-refer" to a lung specialist. There is definately something amiss, whether it be small or large. Thanks so much for your time and advice etc. I really appreciate both you and Chrissy taking the time...x
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Thanks Chrissyb!
I do not really believe it is mets but I cannot help but wonder. I am always reassured when I visit the board and am so fortunate. Nonetheless, visits here often reveal a new aspect of concern. Cancer life seems to me to be always double edged like a very sharp knife.
In the research news section I just read the result summary of the BIG 1-98 trial, "Femara better than Tamoxifen" comparing the 324 lobular to 2599 ductal cancers registered with this study on their 8 year disease free rate. It found only a 66% disease free rate for lobulars compared to a 75% for ductals, for those prescibed tamoxifen only. I am currently taking Tamoxifen. The good news is that Femara increases the disease free rate over 8 years to 75% for lobular patients. Great, my treatment plan was to do 2 years Tamoxifen and 3 years Femara. I see my oncologist in a couple of weeks. I wonder if she will be switching me early. However, I am not excited over the prospect of side effect pains, arthritic and/or joint pain, particularly for us with existing pains, when using these new drugs. I do as I am told. I would really like to see seventy.0 -
Damazon the results of that trial is certainly promising all round. I hear you on the aches and pains but we are all different and react to Femara differently. For me, I have very few added aches and pains from it and there are those who have none.
Love n hugs. Chrissy0 -
Here goes! My wife was diagnosed w/MBC at Square One back in November, 1995. We planned a long overdue vacation, and had plans/tickets in place to go to costa Rica for two weeks. A quick visit to our respective doctors, a med check, Suzanne quivckly learned that she had breast cancer. Diagnosis said it already was a Stagew IV. Surprise since Suzanne had regular mamograms at site in Princeton, NJ.
No trip to CR, rather a modified mastectomy on Thanksgiving Day.
Chemo and all of that at hackensack Med Ctr. Then remission for 13 years. Moved to Sarasota, FL June 1998. Blood work said all was fine. . .this went on for a few years. Cut to the chase: found in the bones, on the liver and a lung about 5 years ago. Aggressive chemo, etc.
Finally, here is my point: since there is no cure for MBC,why are so many puting up with (useless) chemo? I do not wish/want to sound insensitive; however, with all of the slash 'n burn side effects, all totally, chemo that is totally worthless (know that word will creat havoc), why not enjoy life, what God has given and bypass all the h--- of chemo?
I talked to a receptionist and a nurse or two at an infusion center in Florida. "Most" of those in what i have come to call drip-by-drip chairs were MBC patients! Why? Given that one, the trade, knows there is no cure, why take on the h--- of chemo side effects?
With Respect,
Wayne
3-27-13
Sarasota, FL0 -
To my post above, Suzanne is no longer a chemo patient. She looks great! We celebrated our 50th in Oct. Remember, Stage IV diagnosis Nov '95!
PS is anyone familiar with a pain killer known as Lazanda?
Considerable pain - T12 is crushed. Morphine and hydrocodone are regulars. Tires quickly. Hair and skin look great! No longer drives. "Chemo Brain" to the hilt.
At the same time feeling better then ever. No chemo. Why chemo when there is no chemo cure? Enjoying life as God is in control.
Friends threw us a 50th Anniv. Our son, now living in Europe, surprised us by flying in for the weekend!
W have a Goldendoodle - Bella. A profound contribution to our world, to Suzanne's world. So why a fruitless chemo drip-by-drip weekly hell? When there is no cure?
Thank you to those who read both posts. I have much more to add; hoever, the root question is noted above.
Warmest Regards, with Respect to All,
Wayne0 -
Hi Wayne, we are under no illusion as to the fact that chemo will not cure us.........we choose to do chemo to give us more time with our loved ones. Some get more than others.
I'm so glad for you that your darling wife is doing as well as she can with her choice of non treatment. There will come a time in every stage IVs journey when we will decide that we will take no more treatment only meds for pain and live each day as best we can for as many days as we receive.
Congratulations on one 50th Anniversary.......that is indeed a mile stone.
Love n hugs. Chrissy0 -
Wayne---
If your wife has been living with Stage IV breast cancer since 1995 that is prettty remarkable. Where were the mets initially diagnosed?
Standard of care for metastatic breast cancer is the least toxic option first. It is unusual for someone presenting with mets to have surgery. Typically it would not be done from the outset unless the person had an immediately life threatening condition, a large tumor or inflammatory breast cancer or some other condition.
Unless someone has mitigating circumstances (large tumor, aggressive tumor, subtype such as triple negative that does not respond to antiestrogen/aromatease inhibitors--chemo in that case is essentionally the ONLY option) they would not have surgery or chemo right away. They would start with the least toxic option (i.e, something like Tamoxifen or Femara). When one drug stopped working they would switch to the next.
Do you know why your wife had surgery and chemo out of the gate?
Comorbidities must also be taken into account. As well as age. How old is your wife? I am 47--in all liklihood I will not attain the same age as your wife. Like her, I started at Stage IV. I have a lot of options before I would have to consider chemo. Would you tell me to forgo chemo? I think we must all make our own choices--and respect those of others.
You and your wife have made your choice. If you are happy with it, why have you come here? Seemingly the purpose of the discussion is to question others' choices--and in a disparaging way. Do you really want "to understand" or simply to reinforce the wisdom of your own choice?
You seem to be angling for some kind of rebuttal. My suggestion borrows from yours--Enjoy life--don't waste it stirring the pot on the Internet discussion board. Make your wife a cup of tea, go play with your dog. Step away from your computer and enjoy the world around you.
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I have an excellent quality of life. Some side effects from chemo, of course, but nothing that stops me from enjoying time with my friends and family, travelling, etc. I love chemo. Chemo is keeping my mets stable-- it's been more than 3 years now. While I respect other's decision not to do chemo, I do hope they don't make those decisions out of fear. Chemo is not nearly as bad as I thought it would be-- that's just my experience. I hope to be on it for many years to come!
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Wayne, I was DX with MBC out of the gate a little over a year ago. I've had a mastectomy. I just finished my last chemo, for now. I'll be starting radiation in a month. I'll go back on Tamoxifen soon. I'll also do chemo again when the time comes, along with whatever else will give me more time...
You ask why..I ask how could I not? I should just leave the cancer be to do what it will and accept the fact that it will kill me without doing everything I can to postpone that as long as possible?
I'm 37. I have 3 kids and a husband who need me. I hope I get to see my youngest, who just turned 12, finish high school. I want to meet my grandchildren. There is so much.. How could I possibly not do something that might give me a chance to be around for as long as I can? For me, it's not an option..it's an I have to.
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I think it's important to remember not to apply standard of care now to standard of care in 1995. For instance, in the 90's many women were having ABMT (autologous bone marrow transplant) for breast cancer. There were court cases fought over providing ABMT for breast cancer patients. That is just one example.
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Please, may I remind everyone this is not a thread for debating but one for answering questions. I think Wayne's question/statement has been answered.
Thank you.0
