If you are not Stage IV but have questions, you may post here
Comments
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Hi Jean, I can't tell you what the 'lucencies' are but I can tell you that even if it is bone mets it's still possible to treat and even get into remission.
The thought of having mets is not a nice one but there are many women living long lives. Treatments over the years have improved and expanded so gives us way more options. When my bone mets were found I was given the 2 years talk but here I am, a couple of months shy of the eight year mark with no evidence of active disease and aging totally disgracefully and loving it.
Try to relax a little (perhaps your headaches are stress related), watch how you are feeling and your pain level and have your new xrays in July to see if there are any changes. A lot of times with this disease it is a waiting and watching game to monitor changes.
Deep breath lovely, you got this.
Love n hugs. Chrissy
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Thanks Chrissy. Will try to keep my head,lol, and wait an wait.
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chrissyb, totally disgracefully! I love it! me too!
GoingC8, yeah I woulda just done hormonal. Altho I have found out over the last several years that they are not nice to me. my body really does not like them. So, I have stopped. My pain doc is encouraging me to see my onc, whom Ive not seen in a year, his choice not mine.
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Had second opinion today. Very nice Dr, explains things in layman terms. In PET they did find issue with kidney, he said to keep the surgery date and have the kidney removed, continue on Ameridix. Chemo should have been started in January and then move forward with other tests. He says we will treat one thing at a time. I had a nodule on left side of neck being on Ameridix has shrunk the nodule in almost one month. If we need chemo after the Kidney then we will go that route. SO I will be changing my medical group and he will take me on as a patient.
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have you asked why that nodule on your neck has shrunk after one month of Arimidex? I certainly would! If it was cancer there, I'd say Arimidex is very powerful! I had a sinus infection , possibly, before my breast surgery, and my node in my neck was swollen. Now, I did have an unusual and tough time with my bs bs, and she was mad at me cause i refused to have it biopsied. She insisted, even after I told her that every time I had an upper respiratory infection it swelled up. So I let her, and of course it was benign... Has yours been biopsied??? Why are they taking out the whole Kidney??? Did I miss something??
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Goincrzy that is great that they explained everything to you and will take you on as their patient! Sounds like you will be much happier there and that's a good thing.
Love n hugs. Chrissy
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I wanted to report my hip pain just stopped one day and my self-diagnosis was piliformis sciatica, probably caused by the fall on my other hip in late December. Because of this event, I called my MO yesterday and gave her a big YES to her question, from my last appointment in November, of taking Fosomax, which they have found can prevent or lower the incidence of bone mets.
I hope good news for my other fellow worriers!
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Great news Quincat!
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Chrissyb-imho good news should always be reported :
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Quinncat, I totally agree!! 😊
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Goincrazy8 - just wanted to say way to go. Sounds like you are in good hands. I met a woman who had 2 tumors out, one on spine, one in lung. That was 7 yrs ago. I believe she is on anti-hormonals. Last I checked she had been on herceptin for 5 yrs strait. You would never know she had this ongoing maintenance by looking at her.
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Hi
I am not yet diagnosed stage 4 but it's highly likely. I had a chest biopsy yesterday but have been warned to expect it to be cancer.
I am swinging between some hope that there is only one small area not too deep into chest and complete terror about its location. My BC consultant has talked about living years and treatment options but I haven't read much about this location.
I get some tumour biology results on Tue but in the meantime can anyone tell me down a little. Can I hope that they will be able to get it under control?
Liz
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Hi Liz, I know right now you are terrified and you have every right to be.........waiting for that ball to drop is really not good.
With the treatments that are available now, there is every chance that that it will be able to be controlled regardless of it's location. There are many on these boards that will tell you that no one has a crystal ball when it comes to this disease but they can reassure you that life goes on and it's up to us to live it the best way we know how for how ever long it is.
On a personal note, I was given the 2 year speech when I was dx and here I am two months off eight years.........it is possible.
Have faith and do try to go with the flow.....not easy but possible. Good luck.
Love n hugs. Chrissy
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Dear Chrissy
Thank you for the comfort you have given me in replying. I am swinging between being a bit optimistic to being terrified. I font understand how I am supposed to adjust. 2 weeks ago I was teaching full time and now I feel I'm facing being ill again even though I now feel well. My kids don't deserve this either and don't know yet. I may have to get some medication to calm me. Wanting to rewind to when I was able to just be.
Your story has given me hope.
Liz
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Hello, 7of9
Do you have anymore details on your friend who had spinal mets removed? I have 5 spots on my spine that cannot be biopsies because they are on the anterior side. I was under the impression that bone mets is only treated with radiation and/or removal. Since I can't remove a portion of my spine, I thought my only choices were radiation (unlikely over such a large area) or the hope that hormone therapywill keep things under control.
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Liz, it takes time to learn to adjust to the idea that you are once again dealing with cancer so please don't be hard on yourself. Stage IV is treated a little different to the first time round due to the fact the docs are not going for cure but control. The treatments are more gentle so the SE can be a lot less as well. There are many stage IV women still working full time jobs and living an adjusted life but still full. There may well be no need to tell your children straight away but that is your choice.
Breathe dear lady and be gentle on yourself........this all takes time but once treatment begins and it may just be a little pill to start, you will begin to feel a bit more optimistic.
Love n hugs. Chrissy
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Hi Midwest Laura, you are correct when you say that bone mets are treated with rads and if you are ER+ anti hormonals. With the rads they would spot target rather than blanket that way they can treat more easily.
Anti hormonals really are a very powerful medication so don't let ttheir size fool you. I have had nothing other than Arimadex and Femara and the Femara has gotten me to NED and I have been that way for six years.
Hoping you will take heart,
Love n hugs. Chrissy
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jackboo, your emotions from optimistic to terrified are understandable. It is a roller coaster of emotions. Many of us takesomething to help us with the overwhelming feelings, so by all means, ask your doctor to prescribe something for you if you think you need it.
My feelings were such a jumble after diagnosis, and the doctors kept prescribing antideppresants, which made my situation worse. I wast finally able to sort thru my emotions and realized my issue was anxiety, so I got an anti anxiety medicine that made all the difference in the world. Instead of being paralyzed by fear and not being able to get off the sofa, I was able to hear the birds singing outside and move forward with life. I was never one who needed anything more than an antibiotic for strep throat and always powered thru the tuff stuff life doled out. So, I had to swallow my pride and humble myself and take medicine to help me cope and thank God I did.
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Hi Chrissy
Yes I have only known for 2 days and still do t have lab results back yet. My BC nurse has just chatted to me and that helps. I am praying that a thoracic surgeon will be able to operate on my chest. I do think that would be scary but mentally it would make me feel better. I know it wouldn't mean that further spread would be halted but I think survival times would improve. This shadow isn't too deep, so much so that they tried to see it on ultrasound.
Keeping the teenagers out of this one for now as they are taking exams. 16, 15 and 14. My youngest worries me- my girl. I have to fight for them.
Liz
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Hi DivineMrsM
Glad to hear from you. I have been given diazepam 10 mg but haven't filled the prescription. I'm already on blood thinners and am concerned about side effects. Anti anxiety pills are really what I need as it's the anxiety swings that are making things difficult. For example, yesterday I had a CT guided biopsy. I felt dreadful as we arrived at the hospital; to the point of collapse. I managed to calm myself down as the Dr turned out to be an acquaintance of my husband and we had some banter over playing tennis!
Then today I am back to despair even though Richard has been at home with me today, husband I mean.
Liz
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Hi, Chrissy
Thanks for the words of encouragement. I have made a "note to self" about the power of hormonal therapy. Intellectually I already knew this, but I didn't incorporate that fact into my day-to-day thoughts.
There is hope. I could become NED. You are an example of what is possible. There are many examples on this forum of such hope. It's time for me to focus on what is possible instead of planning for every worst case scenario.
It is time to turn the corner. It is time for hope.
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Hi to everyone,
I am posting a pre results update, awaiting results for this shadow on my lung and really just wanting to talk with you all. Still in the dark.
I find out biology of tumour on Tue. In the meantime I am on high dose blood thinners for this clot which is causing me fatigue and I seem to have bowel issues, lost some weight too. This medication in itself is a challenge as I am on a higher dose of a Rivaroxaban for another 9 days before I swap to a lower dose.
My husband has been amazing but I think he is beginning to crack: he has just gone to the gym and is quiet. My 14 year old girl appears to have no friends and relies on me to take her out at the weekend. She really worries me.
I am trying so so hard to be positive but it is like my world has stopped and already the relationships around me are changed. I am über clingy with husband and I have to try and pull back I think. Ideally I would suggest a holiday for us right now but I'm only at the beginning of my treatment- the very beginning.
I looked into a private clinic in Manchester last night. Perhaps just for their second opinion service. I have a shred of hope that this could be benign but something has caused this clot and I'm prepared for it being mets.
Chrissy I know you have said there is hope for me to return to something of the life I had just 2 weeks ago- will that be or am I at the start of becoming ill again with treatment. I want to start SOMETHING as soon as I can but I'm premenopausal so even anti hormonals won't be an immediate option, injections to switch my ovaries off was discussed.
I love my family beyond words and I don't want any of this for them. I am sorry for the negativity guys- only you ladies will understand.
Liz
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Hi Liz, yes, you can most definitely return to a life worth living. Please don't forget that you are right at the very beginning of this part of your life with Stage IV BC but there is much life yet to be lived by you and your family.
Being premenopausal is not really a problem as you can have injections that will put your ovaries to sleep and if you find that a problem you can always have an oopharectomy so you can safely use the anti hormonals. Often times when we are waiting on results we imagine all of the worst scenarios when in reality the worst thing is just the not knowing. It is understandable that you are feeling a lot more clingy towards your hubby and that is as it should be.........he is your partner, not just in health but in the hard times too.
It is just a suggestion, but one that could be very useful for your whole family right now, have you thought of some councelling? A good councellor will be able to give you all some coping mechanisms and tools that can help a lot. Tuesday is not far off now........waiting is so very hard but please try to hang on with a more positive mind set as it will help in the long run.
I have spoken with many women at this part of their journey and all have said a few months later that I was right.......there is definitely hope and things will definitely get better.
Sending love and gentle ((((((hugs))))) for all of you. Chrissy
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Hi Chrissy
Thank you for your reply and for continuing to reach out and support many women on this forum.
In between my post and this one I have taken Lucy out for lunch and had a good chat. I have put her in the picture with what I know and what I am dealing with and her reaction was better than I expected. She is a tough cookie and quite a logical child.
I have suggested that she visits my brother and his fiancée in Wales over the Easter weekend. It would be a break for her. I will go if I'm able but I suppose I would be in treatment so may not be able to. The boys will be busy revising for their GCSE exams. Both are 16 yrs old. If I can see all 3 enjoying life, away from worry I will deal with it easier I think.
Throughout all this, counselling has not been mentioned. There should be a service available for people given this news but our National Health Service is already severely stretched. Accident and Emergency departments across the UK are at crisis point.
I really took on board your point about women feeling better a few months out from this first dx. It's just that I'm frightened about feeling ill with the treatments but then again I'm frightened by the whole thing.
In theory I beat this disease once, or stopped it in its tracks. After 6 years I was so very sure that Herceptin was my saviour! Maybe it can work again?
Thank you again, it helps so much to talk.
Liz
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jackboo, I am so sorry. (((Hugs)))
I believe the Breast Cancer Haven offers some free counseling and other services.
https://www.breastcancerhaven.org.uk/
https://www.breastcancerhaven.org.uk/Pages/FAQs/Category/one-to-one-support
Check with McMillan Cancer Support, too, about benefits available for you.
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Icietla,
Thank you
Will ask about support when I get results. It's horrible going to a place ( hospital) and waiting for this kind of news.
L x
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Liz I'm really glad that you have spoken to your daughter........sometimes they just need to know what's going on in order to be able to find their way in coping.
You may find that you won't feel as ill if ill at all as treatment for stage IV is a lot gentler than first time around.......as I said before, it's all about your quality of life as well as control of the cancer. Maybe a trip to Wales over the Easter break will be a great thing for you all.
Should herceptin not do it for you there is now available Perjeta as well as Kadcyla.........both of these have proven very effective for Her2+. There really are a lot more treatmenrs available to us than there was even six years ago. The hope in all of this is that there seems to be new and better treatment coming available at a fairly steady rate and that can only prove good for us.
I'm glad Icietla gas given you some links for you to follow through.........there is always councelling available for cancer patients no matter where you live but sometimes we just need to ask about it.
Love n hugs. Chrissy
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Chrissy,
You are making a lot of sense and helping me get through this- I think the key difference here is perspective. You are years on from this Stage 4 dx and can relate to the initial shock and how to deal with it.
Good to know that you approve of my chat with Lucy. Although a personal decision; it's good to know that others think you have done the right thing and it's lifted the element of pretence that I have been carrying around with me! It wasn't as bad as I expected, although Tue will be hard.
The gentler chemo regime has me both hopeful and a little concerned. Having chemo again really scares me. It's the thought of things going wrong and ending up in hospital and all the side effects. So gentle sounds good. On the flip side is there any mileage in going for a strong regime if I only have spread to one area? I will wonder whether the docs are more concerned for being gentle over best results. Is it unrealistic of me to hope for NED, perhaps if I can have surgery, followed by other treatments?
Anyway I am second guessing for England here so will have to wait and see. Sending hugs back to you across the miles!
Liz x
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You can certainly hope for NED. I am currently NED after a brain met dx in July. Radiation and surgery fixed the brain met and no mets were ever found from the neck down. Hopefully, my Herceptin/Perjeta keeps it that way. Good luck.
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Hi Mara
So great to hear that you are NED. Thank you for posting.
I am trying to remain optimistic. Is it possible to have the Her 2 drugs without chemo? My breast care nurse talked about single agent chemo given alongside Herceptin. I did well on Herceptin, just a runny nose and tiredness on infusion day.
My " shadow" is in my chest/ possibly in an internal mammary lymph node. Maybe that makes it more of a candidate for full systemic treatment. 6 years ago the docs were saying that the future was mono clonal therapy and that it would be given without chemo. Forgive me, I don't know enough about this yet. I had hoped to never need it!
Best wishes
Liz x
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