Hi everyone, this is my first post. Yesterday I was diagnosed with stage IV breast cancer after a biopsy confirmed mets to the Omentum. They tell me it is also in my bones but I now have to go for a bone scan.
My journey began in 2009 when I was diagnosed with ILC in the left breast. It had also infiltrated 13/27 lymph nodes. I had a mastectomy , 6 rounds of chemo and 25 rads and went on Tamoxifen. I've remained on Tamoxifen since. A year after my diagnosis I had a prophylactic removal of the other breast and a double reconstruction.
The OC has now put me on three forms of hormonal therapy . Two are tablets taken daily and one is a monthly injection. I can't remember the names and had to leave the scripts at the pharmacy yesterday for the drugs to be ordered. The OC said that surgery would not help as it would be impossible to get it all as much is microscopic. She wants to keep chemo in reserve for later. I can't get my head around that the cancer is in my body and we are not getting rid of what is there before starting treatment for (what seems to me) to be with drugs designed to stop further progression. What about what's there now?
They said that if 100 women had my diagnosis 50 of them would be alive in 5 years. I hope I'm in the right 50%.
I am just a crying mess at the moment and would really like to hear from anyone who has had a similar diagnosis ? What treatment did you get? How has the journey been? Thanks, cheers Judy
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Judymagpies
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My heart is going out to you. I'm afraid I can't give you any advice or comfort with any experiences of similar situations, I can only give you some warmth and concern to a fellow woman. I am at the start of my journey, with a mastectomy booked for next Thursday. I can only Imagine about where it's all going after that. Good luck with your treatments. Keep up the healthy foods try to help your body cope as best it can. 🌺❤️
Thanks Jacbiwden. I wanted to wish you well with your mastectomy next Thursday. It's a confronting operation to loose a breast but I took comfort in the fact that the diseased bit was now gone. I hope all goes well. Hugs to you xxxx
Thanks Judy, for your kind words. I've been disassociating myself from the right breast ever since I knew! Although I feel I have accepted it, reality can be very different. But yes, hoping the wretched disease will go along with it. Good luck to you. 🌺❤️
I haven't been on the same journey as you so sadly I can't give you any advice but I will keep you in my thoughts and hope you get to be in the 'right' half. I think I would be feeling like you, I would just want every bit of it gone. Perhaps you could get another appointment with the OC and ask them to explain it better? Sending hugs.
Oh dear Judymagpies I feel for you. I had a similar journey to you since 2010. I have not yet had the cancer in my bones but I have had various different lumps appear. I have tried a few different treatments, some of which I had to come off because of side effects. I have now been on Fulvestrant injections for the past 21 months. They told me they would keep the cancer at bay with the different treatments and that there are plenty to try if others fail. I was told that chemo is kept for later as it is more poisonous to the body and is a last resort when you have already had some. These other treatments can also take it away, probably not for good but any reprieve is better than nothing.
Do you have good family and friends to support you? I have found them invaluable as well as this site. We are all with you and think positive and keep busy of you feel up to it. Big hugs xx
I can offer no words of advice since luckily I havent been in the same situation. (I had mastectomy in Jan this year and have just finished treatment) However I can send lots of hugs and positive thoughts. Ask as many questions of them until you are happy that you understand what exactly is happening and remember this journey need not be taken alone. Lots of thoughts are with you. Xx
Hi Judy, I can feel your pain through your words, I don't have the same problems however I would love to send you 'good vibes' and to say all who read this will feel compassion for you. All you can do is take one day at a time. You have done this before. You can do it again. And for what its worth I really feel you are the right 50%. Go and enjoy life, live it well and LONG!
Thanks for all your kind words and encouragement. Thanks to Chrissie whose diagnosis and treatment plan seem comparable to mine. Perhaps this is the best way forward. I am slowly getting my head into a more positive frame of mind. I will start the new Meds on Wednesday when the pharmacy gets them in. I'm having a bone scan on the 10th so should get a better idea of the bone mets after that. All in all things are not too bad right now. A bit of back ache and I have to eat small meals or else I throw up . It could be a lot worse. Onward and upward. Thanks so much for being there xx
Hi Judy I'm so sorry to hear this and my heart goes out to you. I was diagnosed in Jan 2011 with 6cm lump in left breast. I had mastectomy and auxiliary lymph cLearance with cancer in several of the nodes. I then had the 6 rounds of chemo and radio as you did and I was put on Tamoxifen. A year later I had the other breast removed and a double reconstruction from my back which never settled so they did a capsulectomy. I also had a couple of lumps and a lymph node removed but they were OK. However things still didn't settle so I had to have implants removed as they were infected so just left with empty sacs for a year then we tried again! I had a reconstruction from my tummy in Dec 2015 and the breasts felt so much better and I really though I could see light at the end of the tunnel. Unfortunately I was then was diagnosed in April of this year with secondary bc which they found in the lung. It had shown up in a pre op chest X-ray but no one picked it up so I found out nearly 5 months later via a phone call from a GP I'd never met! Fortunately they can control it with tablets for now but cannot cure it. I asked if they could remove the nodules but they said there is no point as the cancer would just pop up somewhere else. I'm still trying to get my head around it all but I'm adopting the philosophy that I'm living with cancer not dying from it and that helps me. So, after all that I guess we are lucky that we can be given treatments and there is always hope, I've heard some amazing stories of people living so much longer. I've also been doing a lot of research into cancer and cancer fighting foods so I'm happy to share if you want. Also happy to talk of you feel there are similarities. Just message me and I will give you my details.
In the meantime I'm sending big healing hugs your way and I know like me you will appreciate the support from everyone on here. Every cancer is different and we all deal with our situation in our own way as best we can and support each other.
Hi Trish, what a rocky road your journey has been particularly with all the reconstruction issues. My heart goes out to you. We are on similar journeys and I am definitely going to take on board your philosophy of living with cancer not dying from it. The worst part of it is the uncertainty of not being able to plan holidays into next year. I'm not sure what symptoms the cancer will bring forward or what side effects the drugs will have (hopefully none!) .
I would love to hear more about what your research into cancer fighting foods has shown. I will pm you my contact details.
Big hugs to you too. Our journeys took an unwanted and unexpected twist but hopefully we can both be strong and well for many years to come xxxx
My only recommendation for you is to look up Shannon Knight (Shannon's story) on Facebook. She went through stage 4 cancer twice and is still here to talk about it. She went through chemo and radiation but all that did was bring it back fir round two. She ended up at a cancer hospital in Mexico where sne spent 6-8 months. She has now been cancer free for 5 years without any drugs. I am following her lead but I am seeing a doctor in Irvine CA that does a lot of the same protocols that Shannon went through in Mexico. Shannon's mission now is to help people like us get better. Please check her out and don't be afraid to contact her. She wants to help.
Not sure where you are living but if in the UK Breast Cancer Care run support groups for women with secondary (metastatic) breast cancer. Two women who are friends attend the Edinburgh group, both diagnosed with metastatic cancer more than 20years after first breast surgery. They also run a peer support service. Macmillan also run useful services and provide data sheets on drug treatments. Regrettably it has been left to charities to provide the caring side of recovery.
Thanks Lovesradio. I live in Sydney, Austtalia. The breast cancer network here is very good - active and strong. I have received their newsletters since my first dx. I think I'll reach out to them now for some literature on secondary bc for my kids who are 25,23 and 20. I think this diagnosis has upset them a lot and I think having more information would be a big help.
My OC did mention about putting me in touch with support groups. I will follow this up to.
Thanks Jacbowden. I am not tolerating the Afinitor/exemestane very well - I have a mouth full of ulcers which is really miserable. I have a couple of different mouth washes and some topical gel but eating is really painful and diffficilt, I'm also incredibly tired but feel bad whinging about either of these things knowing that other ladies are dealing with much worse. I'm in Melbourne this weekend with my kids which is great. I'm seeing the Oncologist on Tuesday and will have the first Xgeva injection,
How is your recovery from the Mastectomy going? I hope you are feeling well and have a treatment plan worked out
Hi Judy. Just something I came across online recently. Sometimes drugs used for other treatments are found to have benefits that possibly can help other illnesses. There is a drug used for osteoporosis and to prevent broken bones. They are called Bisphosphonates. Read up on them online and some of the trials being done around breast cancer and bones. Maybe ask your consultant about them. I don't think they can be prescribed yet other than for for osteoporosis but its worth genning up on to discuss options. Take care, all the best x
Thanks Apple I will ask my doctor about biophosphates at the next visit. I stopped taking the Afinitor - it took me 2 weeks to recover from the 3 weeks I was on this drug. Now I'm just continuing with Exemestane and Xgeva, which I'm fine with as I seem to. E tolerating them well. Best wishes to you,
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