Help?!

[Nat1990]

Hi everyone.. I’m so pleased I found this group it has giving me hope for my mum. She was diagnosed with stage 4 breast cancer to left breast and lymph nodes. After weeks of tests, scans and appointments it was confirmed it has spread to her T9 vertebrae in her spine. Although they confirmed it was a bone met from the breast they did not do a biopsy as yous know its a tricky area. But because it was such small volume spread they decided to go ahead with left mastectomy and lymph node removal, 9/27 lymph nodes were positive for cancer. She also had 15 sessions of radiotherapy to chest wall after that. We were back and forth to her oncologist for well over 2 month as they wanted to get her treatment right anyways after lots of investigation it came back ER Positive HER2 Negative.. although he said there was small evidence of her2 positive but not enough to treat as her2 positive you think? In between getting first diagnosed last October until january 2019 she was on no treatment as they were trying to get the treatment right.. in this time I was dreading her next scan as I was thinking oh god it is going to spread even more with her not being on any kind of treatment. But the bone scan and ct scan she had in the January showed no more spread and the T9 vertebrae became calcified that’s what he said.. he said that normally happens when it responds to treatment but my mum hasn’t even started her treatment so??? Anyways she’s been on Ibrance and letrozole since mid January this year and she has her ct scan tomorrow we are back next month with oncologist for results and catch up. I’m hoping and praying that it’s good news 🙏🏼♥️

[Francesca10]

Welcome. It’s great you are there for your mom in this mbc battle. The radiation could have hit the t9 and that’s what he meant. I would clarify it with the onc. Do you trust them? Because communication is crucial dealing with this beast and you have the right to question things for understanding.

[Nat1990 in reply to Francesca10]

Thanks for your reply. No she had her last scan before she started her radiotherapy. She completed the rads last month she had her last scan in the jan just gone. Next scan is tomorrow. That’s why I don’t understand it’s became calcified? It’s all very confusing xxx

[Red71 in reply to Nat1990]

That is very confusing! Since you have an appointment to get the results of her scans, I would encourage you to write down a list of questions that you need answers to before going in. I know I forget to ask everything I’ve been thinking about unless I do. It’s a good thing your mother has you to help her. Elaine

[Nat1990 in reply to Red71]

We won’t get results until the 19th June. That’s the way it works here in the UK you have your scan then you have to wait couple weeks to go back to see your oncologist who will have then results so it’s gonna be a long couple of weeks xx

[mariootsi]

I'm sending prayers for a good scan too!

[hopenowandtomorrow]

Praying for good results!!!

[Maludagui]

Prayers 🙏

[PJBinMI]

I'm glad you found us! I suspected you are in the UK since you called your mother mum! lol You said she hadn't started treatment but surgery and radiation are treatment! It's not at all unusual for there to be lag time between diagnosis and treatment as "staging" (all the testing to narrow down as much info as possible about the cancer) can take time. With just one bone met found, that sounds really good to me! If your mother is post menapause, that is a plus for her, too! Is she on a bone drug like Zomera or Xgeva? Having mbc is never "good news." But once that diagnosis is made, being older, having only bone mets and having an estrogen receptor positive cancer are all very favorable. And since your mum just started recently on Letrozole and Ibrance, don't panic if this next scan doesn't show improvement. It can easily take 3 or more months before improvement is seen on scans after anti-estrogen meds are started. I don't know if they told you and your mum this, but if she has any lung symptoms at all while on Ibrance, she should report that to her onc immediately. It isn't common but Ibrance can cause lung damage. That happened to me and the damage seems to be permanent. Nat, I was diagnosed with denovo (from the beginning) bone mets that were called "extensive" in 2004, 15 years ago and have done well. I got nearly five years from Letrozole, and then over 9 from Faslodex and now have been on Aromsin for about 15 months. I was on Ibrance with the Faslodex for about 9 cycles in 2016. I recently saw a bc specialist onc for a second opinion as my long time onc retired, and he said I should expect to still have quite a bit of time left. More and more of us are doing well for longer and longer. So you and your mum have alot to be hopeful about!

[Nat1990 in reply to PJBinMI]

Thank you so much yes she is post-men. She had a hysterectomy about 7 year ago as she had pre cancer cells down there but that’s all sorted now so she doesn’t have to have any treatment to stop her ovaries from producing oestrogen. She’s not on any bone stuff yet but does take vitamin D.. so have you been stable? Xxxx

[blms]

The calcification could simply be her body’s in immune system healing that area of cancer. That us what happened to me before I began treatment. The diva always say it has to be the meds

[Nat1990 in reply to blms]

You think that? Oh I do hope so. What happened to your met then did it just disappear? And thanks for your reply xx

[blms in reply to Nat1990]

My situation was with plural fluid below my left long. The MBC diagnosis came from that after 20 years in remission from stage III. I wasn’t to start my medication until January because of diagnosing taking the time that it does. From the time of my diagnosis to the time of my scan right before I started Ibrance was about three months. When I had the scan done before starting the medication they didn’t see any fluid that was all gone and the nodules in the lining of my lungs were not obviously cancer and the oncologist thought they may be looking at scar tissue but wouldn’t know until the next scan to see if it was the same. When I had the scan done six months later they determined that it was just scar tissue from the cancer that had diagnosed me with metastatic disease. So bottom line is that I took no medication and did tiger things to enhance my immune system and it got rid of my fluid and nodules. At least nodules are not obvious. So do I Believe that army and systems it working properly can knock out a lot of this cancer and yes I do

[blms]

Not diva but docs! Funny maybe the same idea!!

[NPmary]

Nat, your mum is on the standard of care. Fear and scan anxiety is awful. My daughter has suffered much pain and anxiety for me as well. Know loving your mum is enough and is exactly what she wants and needs. Know that whatever scans show - she's already been living with it. There are great advances in treatment, people live longer than they used to. Support her in her decisions. We all have to decide many things about treatment. My own biggest concern is that I will not accept one treatment too many and prolong my suffering and dying more than necessary. Take care of yourself.

♥️

[Nat1990 in reply to NPmary]

Thank you so much for your reply you so right xx best wishes

[LadyPastor]

First off let me say welcome to our group. I also went through all this with my mom for about 15 years. Then after she passed I was diagnosed with breast cancer. I can understand how your mom was better without treatment. Our Lord Jesus heals. It is ok to go to doctors and such as God made them as they are for helping us. But sometimes He just heals it because someone prayed for a healing.

[Nat1990 in reply to LadyPastor]

Thanks you so much for your reply. I’m so sorry to hear about your mum and now you having to go through it. What stage are you? Xx

[Scandia68]

Hi and welcome to the group the support here is wonderful. The scans are nerve racking and I’d love to say they get easier but I suppose I have just got used to the fear every 3 months. Good luck tomorrow

[Scandia68]

Your mum has the same cancer as me and my bone met is in my pelvis. My daughter is also born in 1990 and fearing the scans just like you. I love having her support and believe me it will mean a lot to your mum that you are there for her. Just remember that the scans are getting so advanced so quickly that they are finding things now that would never have been picked up a few years ago and may never have caused any further problems, but of course now we have we need to treat it x

[Nat1990 in reply to Scandia68]

Thank you for your reply how long have you had metatastic breast cancer for? What treatment etc? Xxx

[Scandia68 in reply to Nat1990]

I had breast cancer in 2017 was given the all clear then in May 2018 they found one met on my pelvic bone. I started on ibrance and letrozole and have hardly had any side effects my hair is fine skin etc. They also shut my ovaries down by injection every 3 months. I feel really well overall and don’t forget everyone is different so hang in there. My daughter got very involved in everything and eventually almost had a breakdown so pace yourself and don’t panic, it’s not a very aggressive cancer type and if you talk to people on here some have years and years of experience with mets x

[SeattleMom]

Three words: SECOND OPINION IMMEDIATELY!! Your description of interactions with your mum's oncologist are downright scary. Among my questions:

1. Why such extensive radiation and WHY to chest wall? If, at time of diagnosis, spread was only known to breast and lymph nodes (and diseased breast had already been removed) why wouldn't the radiologist have simply targeted the underarm and lymph node area until any further spread was identified.

2. They had cancer in nine lymph nodes which should have identified your mum's cancer profile immediately. Why would there have been ANY DELAY in beginning treatment?

3. If they had confirmed one spot on her spine at the outset, why wasn't that one area simply targeted for radiation?

Chances are, your mum is on correct protocol for her cancer type, but the process you describe for her treatment would leave me very skeptical of any recommendations from her existing oncologist, without, at least, the concurrence of a second, well regarded, one. Good luck and God bless you again, Nat, for supporting your mom on her journey. You are a truth earth angel! XXOO Linda

[Nat1990]

She had a left mastectomy and lymph node clearance after biopsy’s and scans had confirmed this. Scan picked up area of lesion T9 suspicious of metastasise. But because it was such small volume they decided to take the tumour away (mastectomy) and lymph nodes.. she had rads because that’s what happens after a mastectomy. She had to to chest wall under arm and neck area. It prevents it from coming back in the future. Radiologist said it’s best to let the letrozole and Ibrance treat the small lesion in her back and watch things.. but she’s said in the future if it starts to grow or give her pain etc then they can maybes go ahead at looking to get rads to that area. But for now just let the drugs work. My mums oncologist is so nice he knows what he’s doing x