Hi 2x,
Lovely to hear from you! You sound as if you’re doing well,good on you and well done!
Thank you for updating us, glad you are not in pain. Hope you’re home soon and the wait for path results is bearable.
Love Julie x
Home from the hospital.I ended up having a thoractomy instead of the VATS procedure.when my surgeon had the camera in my lung he saw that the tumor was up against my main heart valve.He immediatly stopped what he was doing because apparantly i could have blead alot or worse.So he made the incision from my back,the more traditional way to remove a lung tumor.
My thoracic surgeon was so nice that he took the time to call me today with a verbal confirmation of my path report.He called up the pathology department himself because he knew how anxious I was to wait.
Good news the lung tumor was 1cm,margins were clear and lymph nodes in my chest and left lung clear.
My left breast had no trace of cancer or the 4 lymph nodes sampled.I started out with a 6cm breast tumor.the pathologist said he tested the breast twice to make sure.All clear.Looks like the Gezmar/Cisplatin worked better than anyone thought.Im glad I pushed for chemo instead of Femara.I highly doubt I would have had the same response if I started on anti-hormones instead.
I am very grateful for my response but even more grateful for such a wonderful thoracic surgeon who I feel saved my life.
On monday I will be paying a visit to my naturalpathic oncologist to do a tumor circulating test.Apparantly this blood test measures the amount of micrometastasis in the blood.I will then take this to my medical onc to determine if I would benefit from a few more rounds of chemo or start radiation.
for now im glad to be home with my family.im moving a little slow and still sore but glad surgery is over with.
I will continue to update as I go along.
xo
2x
What a wonderful story! Thank you so much for sharing with us all.
Thanks also for doing your bit to raise awareness to other women that there are options. Good luck for a speedy recovery.
Hi 2x so great to hear it all went well - thanks so much for letting us know. I’ve missed some posts on this thread including your comment about the lady with a single met just given hormone therapy - I have also been PMing people who seem to fall in the oligomets category to encourage them to push for more aggressive treatment. It’s an uphill battle for sure.
finty xx
Hi 2X really great news to hear that everything went so well.I am really interested in the blood test that measures the amount of micrometastasis in the blood.Why are we not all given this test surely if it can tell if micrometastasis are in the blood then it would be used to determin if chemo was needed in the first place,and why are we not given it after chemo to check,or am I being a bit dim and it’s not as simple as that.
wishing you all the best 2X and a speedy recovery, Melxx
Hi mel
I started a thread recently about a test that has just been devised that can detect a single cancer cell - you can read about it here:
breastcancercare.org.uk/forum/new-blood-test-for-cancer-t29311.html
I doubt though that this is the test 2x was referring to, as I wouldn’t imagine it is commonly available yet. Perhaps it is the standard tumour marker blood test that many of the secondary ladies get. My onc doesn’t believe in them so I don’t have them, but they are very standard.
finty xx
Hi Mel
the test is called a CTC test.It is used for woman with metastatic disease.Here is a link to describe.
Hi 2x thanks for the link.I also read something about this on the Royal Marsden site but didn’t think it was available yet.I wonder if any of the other ladies with mets have this blood test.Is it the same test as Finty was talking about?it sounds similar.
Hope your feeling ok. Melxx
I did a little more reading on CTC testing.
It is NOT a tumor marker test.It is relativly new.
It measures the amount of cancer cells in the blood.This article explains more.
Hello 2x,
Firstly, I’ve been thinking of you since your op.
Secondly, please keep posting your progress, because it may give others in a similar position the confidence to insist on the treatment they want/feel would help. I think this is important, because far too many cancer patients allow themselves to be fobbed off - particularly when Doctors quote research. But when you look a little deeper, you often discover how weak the so called research is. For example since having Cyberknife Radiotherapy last October, I have been trying to challenge the blanket ban imposed by my local Specialised Commissioning Group (i’m doing this so that any cancer patient who needs it can have it). Anyway, when you look at the so called evidence on which this ban is based, it is flimsy to say the least. The so called evidence is an out of date Canadian Public Health Report from 2003 ( I believe Canada have since approved Cyberknife), which only looked at Cyberknife for a limited range of cancers - and then only in relation to cost effectiveness, rather than clinical effectiveness (they compared Cyberknife to one other form of stereotactic radiotherapy called Gamma-Knife). So at best all they can really say is that Cyberknife is a more expensive treatment than Gamma-knife in a limited range of cancers. How on earth do they justify saying they will not fund it to treat any cancers on that basis?.
Given that the statistics suggest that one in three people get cancer, it astonishes me that we’re not a more effective lobbying group. If we all got together to demand better services, no Government would risk upsetting us.
Hi there,
I first came on this site 7 years ago when i was diagnosed with stage one breast cancer. Now unfortunately I’m back ! I was recurrence free for 7 years until I experienced pain in the chest area on my mastectomy side six months after giving birth. I was diagnosed with secondary breast cancer with a 5cm tumour in the sternum area and two small lesions in the liver. I have been on chemotherapy (docetaxel and avastin and then herceptin) since last December. The tumours have shrunk a lot and I’ve been told that I’m a candidate for surgery as the tumours are isolated and the response to the chemo has been good. The thoracic surgeon that I saw told me that the surgery would be for curative intent, not palliative. Once my chemo is finished, I will have a month off for my immune system to recover and then my sternum will be removed. I will later have RFA (radio frequency ablation) to my liver. Another surgeon told me that the state of oligometastases is a new concept and their approach is to keep on dealing with (i.e. removing) tumours if they recur. I just thought this might help anyone who has a similar diagnosis. It’s definitely worth asking about surgery and pushing to speak to different specialist surgeons and departments. If anyone has had a sternum-ectomy, could you let me know what the recovery was like for you ?
forgot to add my blog - afrochemo.blogspot.com - also looking to connect with black and minority ethnic women going through chemo and mets. Trying to find an afro wig has proved an impossible task ! So much so that I’ve started blogging about it…
chili
thanks for sharing your personal story.your lucky to have doctors who are treating you curativly rather than pallitivly.many doctors still have the opinion that stage 4 is a one size fits all disease.its not, especially with woman with limited disease.
i hope your surgery goes well.you are doing the right thing.oh boy are you doing the right thing.sounds like you are informed which is very good.
i plan on updating this thread as i go along in my healing.to give other woman hope that come along in the future in a similar situation.i hope you can pop in an update as you go along in your journey too.
2x
Hi chili
I’m also being treated “curatively” for bone mets, although mine were there at dx in 2009 - we are a small minority. We seem to be the lucky ones - where are you being treated? Also, I wonder if your team considered Cyberknife as an alternative to surgery for your sternum? It’s non-invasive and very easily tolerated - just ask if you’d like some details. I’m in the middle of a course of three sessions for two mets in my shoulder and rib - three afternoons and the cancer is gone!
Good luck - let us know how you get on.
finty xx
Hi chili
Just visited your blog and watched the William Li link on angio-genesis - it’s really excellent, thank you so much. This is an area I am very interested in - I’ve just finished a year on Avastin, and have been doing loads of reading on anti-angiogenic foods, so was very pleased to see how much research is going on in this area. Also delighted to see that Dr Li is working with Dr Dean Ornish, who’s work I try to follow closely.
finty xx
Hi Finty,
I started off at King’s College Hospital in London, but will have sternum op at London bridge then liver op back at King’s. I don’t know what Cyberknife is and no-one has mentioned it to me as an option. Is it like RFA ? Is it a less invasive option to sternum surgery ? (which does frighten the life out of me if I’m honest, but my surgeon thinks it’s the best way to go and I just want to try and prevent the tumour from returning). Fantastic and fabulous news about your mets - NED is the way to go !
I find that the whole ‘curative’ thing feels a bit like being in limbo doesn’t it ? I went to see a psychologist recently who told me that I should be preparing for death as I have liver mets ! I left feeling so low, then tried to pep myself up by remembering what the surgeon said. At the moment it still feels like I’m on a rollercoaster…
And yes, the William Li link is amazing. youtube.com/watch?v=B9bDZ5-zPtY
He’s a great speaker and the findings are impressive. Now I just need to start eating more of those foods…!!!
And 2x, thanks for your comments - i’ll definitely be updating on my progress and on anything new that I discover on my journey.
Chilli xx
afrochemo.blogspot.com
Chilli - Cyberknife is highly targeted, high dose radiotherapy. In a few sessions you can have enough rads to totally destroy the tumour, whilst causing only minimal rads exposure to surrounding tissue. Its a robotic arm that moves around the body. In my case for my shoulder met it blasts rads from 165 different angles - the blasts only intersect at the tumour, so only the tumour is getting the high dose, everything else gets 1/165 of the dose. So in 3 treatments the tumours are gone, and no evident side-effects (although there is a heightened risk of bone fracture in the future). Cyberknife can be used for bone and liver - it has amazing targeting technology to enable the machine to track movements as you breath so that areas like the liver, that are constantly moving, can still be very accurately treated.
I would really encourage you to investigate whether you are eligible, it would be much less of an ordeal than surgery with fewer complications, and I imagine just as effective - it’s very new and many oncs either aren’t aware of it, or just haven’t put patients forward. There is a machine at the Harley Street Clinic - I assume you are being treated privately if you are having your sternum op at the London Bridge? My consultant is at London Bridge - PM me if you’d like her name to try and get a referral.
fintyxx
finty xx
Hello Chilli,
just want to say I’m another stage 4 person being treated curatively. My Oncologist told me that I am one of a subset of patients with limited/isolated spread who can sometimes be cured, or achieve long term survial (the medics call it oligometastatic disease rather than metastatic disease).
I had a mastectomy and lymph node clearance, followed by seven months of fairly aggressive chemotherapy, followed by radiotherapy to the mastectomy site, lymph nodes and neck, followed by Cyberknife stereotactic radiotherapy to three skull metastases (which are the only secondaries I seem to have), and am now taking endocrine therapy (letrozole), to stop the cancer returning (and bondronat), to preserve bone.
I would totally support what Finty said about investigating Cyberknife. My understanding is that Cyberknife has been the subject of research for treating liver mets, and it has been shown to be as effective as surgery - but of course you should get your medical team to advise on this.
All the best for your treatment, and keep your chin up.
Chili
Here is a very recent article on resection for liver mets.It does not specify surgery vs RFA or cyber knife,but the bottome line that removal IS a option.It also explains who the ideal candidate for liver mets resection is.This may help answer a lot of questions you may have.Studie is from the U.S.
medpagetoday.com/MeetingCoverage/ASCOGI/24490
2x
Thanks so much for this article 2X - really useful for an appt I have with GP tomorrow about wanting a second opinion on Cyberknife and my liver mets. I understand you feeling about the emotions of liver mets - I had a young doctor last week who said such treatments are not cost-effective and to stop thinking about them but some of us are aware of the possibility of extending life expectancy and I for one am not willing to give up on this yet… I’ll now look at the video as I’m also very focused on the food aspect and have been following a number of ideas in books I’ve read.
Thinking of you - as are a number of other posters!!
Fran