If you are not Stage IV but have questions, you may post here

chrissyb

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

jackboo09

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

Icietla

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.

jackboo09

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

chrissyb

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

jackboo09

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

mara51506

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.

jackboo09

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

mara51506

I had to initially take taxon but it was dropped due to side effects. Normally, it will be dropped after 6 to 8 cycles anyway after scans to check if Mets are stable, shrinking or gone. I am just on Herceptin and Perjeta now.

mara51506

I had to initially take taxol but it was dropped due to side effects. Normally, it will be dropped after 6 to 8 cycles anyway after scans to check if Mets are stable, shrinking or gone. I am just on Herceptin and Perjeta now.

chrissyb

Liz, you can most definitely hope for NED! It is the aim for all. Just because the treatments are gentler doesn't mean they don't do the job.......I have a close friend who lives not far from me; she was dx stage IV about six months ago. She had a large abdominal tumor and bone mets......her lastest scans have come back as no evidence of bone mets and the tumor has shrunk to half it's size. Her treatment has been Faslodex and Aromasin. She has been living her normal life and is as busy as ever with her six daughters the youngest which is 12.

I can give you a list of people I know who have been where you are only months ago and are now either back at full time work or studying or jusy living life to the full..........there is always hope! As Stage IV we need to learn to live with cancer not die from it. ........it's amazing how the change in attitude really does help.

Just a thought, do you have in England a group called Canteen? Here it is a group for children of parents or siblings who have cancer and it helps the kids know that they are not alone.......they also do loads of fun things. If you do, it may help your daughter make some friends, do some activities and generally help her. Your Cancer Council should be able to give you information.

I'm glad our little chats are helping......Tuesday is getting closer.

Love n hugs. Chrissy

jackboo09

Hi Chrissy,

Yes I need to hold on to the many treatment options that are available and if I am Her 2 again then my past history suggests that these drugs do work. Thanks for the note about gentler chemo. I am making some false assumptions here and jumping the gun before I have the whole picture! My breast care nurse says it's because I am a teacher and I love to plan.

I have been given lots of great advice on this forum and being off work now means that I have the time to look into various options. The clinic in Manchester has excellent facilities but I very much doubt it as a treatment option because of cost. However I may well use its second opinion service.

The cancer charities are one avenue of support and will be able to help me navigate financial matters. Macmillan offer grants and as yet I'm not sure what benefits I may be entitled to.

The story of your dear friend is uplifting and I do hope she continues to do well. 6 daughters- goodness me, she must be one busy mum!

My family and I have a holiday booked in August, in England so no foreign travel. I live in hope that we can go. It is a company called Center Parcs. They have a number of holiday villages set in acres of woodland and we love the whole family friendly set up.

I am frightened about getting my results tomorrow because I think I will swing back down again. When I think about walking in that room I feel running in the opposite direction. I know my husband is hoping for a surgical option but we have been told it is unlikely. For me, the location of this mass is adding to my fear, but as you said treatment does work for many. I have only come across one other person who I believe had this kind of mets, but again I may be confused? I had one positive intra mammary node in 2011 and so it appears that the route has been through lymph nodes into the chest area. All very scary.

Thank you Chrissy for holding my hand through this.

Love Liz

chrissyb

Liz, it's all about just taking things one day at a time.......don't worry about yesterday, you can't change it, it's done and gone and of course tomorrow never comes because when you wake it is already today.........just today is what we work on.

I fully understand the need for irgamization and preparation, I have a tendancy to be the same.....lol. yes, the having to know options, treatments, outcomes, possibilities etc, etc, etc. The list goes on and on and eventually we can drive ourselves crazy. I've learned to let it go and let the universe take care of it (and it usually does) which makes my life so much better.

Keeping everything crossed that tomorrows results are not nearly as bad as you are thinking.

Love n hugs. Chrissy

jackboo09

Hi Chrissy

Tomorrow looms. Trying to hold it together, just very scared to the point of feeling like I cannot walk in that room. Richard will be with him. I pray for some positives and for the strength to face this all again. I may be 46 but o feel like a child.

Lucy came in from school and we had a cuddle, she is 14 but still needs her mum.

Hugs to you x

Liz x

chrissyb

Deep breath Liz, you can do this.........it's not bad news until you hear it, until then it's just conjecture. Hold tight to your hubbys' hand and draw strength from him.

Daughter cuddles a the best.

Thinking of you. Love n hugs. Chrissy

Goincrzy8

Chrissy you are amazing, thank you for reaching out to us who are not Stage IV and have questions. You are definitely an inspiration. So I had my regular MO appointment on Wed. She is still wanting to run more tests, MRI of brain, and biopsy spine spots. She has me on arimidex and I have not taken for 30 days and now she wants to change to something else? Why not let me try this, it has shrunk the neck nodule. She also stated my bloodwork showed High cancer markers, my response, kind of a smart ass. "Of course they are high you havent done any treatment"

Cant wait to change to new MO

chrissyb

Hi Goincrzy, am I understanding you correctly, your MO put you on Arimadex which you haven't taken for thirty days. Question......why haven't you taken it? And why does she feel the need to change it?

It can take a good three months to find if a med is really effective........it sounds to me that the Arimadex was doing what it should by shrinking your node. Markers can take a while longer to move in a downward direction due to the fact that they are influenced by other things in our bodies.

It's not unheard of to have a break from treatment but not in the early part, only after things have been stable for sometime.

When do you see the new MO? Hopefully soon.

Love n hugs. Chrissy

Goincrzy8

Chrissy what I meant was I have not been on the Hormone Therapy for 30 days. She prescribed on Feb 9 I started on Feb 10. I have no clue why she wants to change it, she didnt even ask if I had any SE's. So she is moving on to another drug that I have just started on with no issues.I have to have kidney removal at end of month, so in April I wiill change my PCP and Medical Group and see new MO.

chrissyb

Goincrzy, did she specifically tell you to stop? Maybe she thinks that it coukd interfere with your up coming surgery but I have never heard that it has before. I was on Femara when I had a full hysterectomy last year with no probs at all.

Arimadex, Femara and Aromasin are all AI's and work much the same way and usually to swap one for another is only done when there has been further spread or side effects are totally debilatating. I think I would be making a phone call and asking these questions and if she doesn't have a reasonable explanation I would just take them until I saw the new MO.

Love n hugs. Chrissy

Prishie

Im a 31 year old and has just been diagnosed with stage iiia breast cancer which has travelled to the lymph nodes. I did a PET CT scan but the results was received 2 days after which i have already started my chemo (TAC× 6 cycle)...from the PET CT scan it appears that the cancer has reach my liver and described as metabolicaly active wide spread liver metastases. Thus changing it to be a stage IV ..What are my chances?

Prishie

Im a 31 year old and has just been diagnosed with stage iiia breast cancer which has travelled to the lymph nodes. I did a PET CT scan but the results was received 2 days after which i have already started my chemo (TAC× 6 cycle)...from the PET CT scan it appears that the cancer has reach my liver and described as metabolicaly active wide spread liver metastases. Thus changing it to be a stage IV ..What are my chances?

jackboo09

Hi

Liz here, my results have been delayed and won't be ready now until Wed!

My husband has an important audit at work on Wed too. All this is just too cruel.

chrissyb

Oh no Liz! What a terrible blow for you to have to wait another day when you are already climbing the walls. Do you have a friend or family member that can go with you for moral support?

Sending special ((((((hugs))))) as I know you need as many as you can get. Chrissy

jackboo09

Chrissy,

My mum is on her way round. Trying to take it in baby steps x

ShetlandPony

Maybe I have detected a miscommunication about the Arimidex, Goincrzy8 and Chrissy. Maybe G meant she had indeed been taking the Arimidex, but had only taken it for 20-something days before her doctor proposed a change. Not that she failed to take it at all. Is that right, G?

chrissyb

Liz, I'm glad your Mum is coming around as she will definitely give you the support you need right now.

Love n hugs. Chrissy

chrissyb

Shetland regardless if that was the case, my point was that twenty days is not near enough time to see if the Arimadex was doing the job but I see your point. Thanks for the input.

Love n hugs. Chrissy

ShetlandPony

I agree with you that a month is not enough time to tell. I'm curious to know the onc's reason for changing the drug.

chrissyb

Me too.

Goincrzy8

Shetland yes you are correct. I started on Feb 10and I have been taking daily and my appointment and with her was March 8th. I see no reason to change yet. So not sure why she wants to try something else. Another reason to move to the new MO