Diagnosed with mets to sternum!
hello! I am 39 years young and had 6 years cancer free under my belt til today! I had sternum pain for over a year and finally they decide for bone scan. Scan showed only spot on sternum and no where else! Fast forward after ct scan and biopsy got the call today that it's BC mets and I was told by fill in oncologist as my new one (prev one retired last month ) left the country today for two weeks!!! Anyone have any advise for me? Still waiting for pathology to report receptors and what not!! She could only tell me that I can't have rads because to close to heart, can't do surgery. Only chemo!!! Kinda left me with not much to go on!! Anyone??????? Thanks!!!
Comments
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hugs to you Kate. That's a hell of a way to discuss treatment plan a new dx like this can be scarey. There is a thread for younger sIV patients that you may find very helpful. A great group of intelligent and knowledgable women on these threads. I know the shock is overwhelming as I'm new to this sIV stuff however when your plan is in place you will start to feel more in control.
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Not sure where you live Kate but the whole hand-off does not seem particularly coordinated with the person that took over for your retired Onc and the person covering for the one on vacation.
I guess my question would be- are they expecting you to wait til this person returns to the US then schedule an appointment to discuss treatment options? If you are sticking with them I would say you want an appointment for the first day of that persons return and expect all your results to be available and ready to discuss- if not I would ask on this site because people all over the world are being treated using very cutting edge therapy and protocols and you want that too not all about what you "can't" do.
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thanks ladies! I will fight for the best treatment! Thanks for the info about the younger forum also!!
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Crappitycrap! I am so sorry. About the "no surgery" thing, I would go for a second opinion. Somewhere, at some point, here on BCO I read of someone with mets only on the sternum, who had a new (fake) one put in. You are so young that I think you could find a doc willing to get really aggressive and jiggy with this.
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If your cancer is hormone positive, there should be several non-chemo drugs available to you.
I suggest a second opinion, maybe from a major cancer treatment hospital.
Keep us posted!
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Oh, Kate, that stinks. I just wanted to echo the other posters and suggest you get a second opinion, preferably at an NCI-designated cancer center (http://www.cancer.gov/researchandfunding/extramural/cancercenters). I know a woman who just had surgery at Johns Hopkins last month on her sternum to remove BC mets. She's also going to have radiation, so I know it can be done. Take care - I'll be thinking about you.
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Kate, if radiation would be beneficial, yes, they can do it without harming your heart. I had several inner mammary nodes lighting up with cancer during my initial PET scan last Oct. Come last June, when I was ready to start my post-LX rads, my RO was very concerned that these nodes may not have been cleared by early chemo. The nodes lie directly under the sternum and cannot be biopsied because of their location. My RO who had spent his entire career practicing, teaching and researching rad therapies had recently left Shands and came up to Pensacola. He devised a treatment using shallow beam electrons -- similar to boosts -- which could be calibrated to only reach just under the sternum to the nodes and not affect my esophagus or heart. (I was also treated with typical whole-breast rads.) A follow-up PET scan a month ago showed those nodes were clear.
I don't see why this can't be done to the sternum itself, which is even closer to the surface. But I suppose it would depend if you would benefit from it to begin with.
Carol
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Here is a case of sternum replacement: http://www.ncbi.nlm.nih.gov/pubmed/24140815
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Oh Kate, I am so sorry to hear this. I have no advice to offer - only can say that you are in my thoughts. Many, many hugs.
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Please keep us up to date with how you are doing. I had some stabbing pains in my sternum lately and my liver has a big lump on it. I start the assessment of mets this Thursday.
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Hi sorry to hear of your recurrence.I was Diagnosed with recurrence to the sternum as well, it will be 12 years this August since I had my Breast removed.Ihad aggressive Chemo 8- rounds and 30 of Radiation.Found out in March 2- years ago it was back they told me first that 50% of my sternum was eaten( from cat scan) but after a pet scan it was less then that.Waited until August of the same year to get treatment again.It took so long because of all the appointments and cat scans ,pet scan ,biopsies etc. Radiologist said they couldn't radiate because of the heart and lungs will only do as last resort when I can no longer handle the pain,no surgery to big of an operation because of the size and where it is at! I'am being treated with Letrozole (Femera) and an Infusion drug called Aredia Used to to take calcium and bone Cancer which I get in Ambulatory care once a month! I return to the cancer clinic March 28.I have an indentation in my chest wall where the cancer is! Now I noticed the lump seems to be going up the top of where it was.They said they would keep an Eye on it! They told me their is no cure this time they are only going to try and extend my life! Hang in there and I hope you have a better diagnosis ( maybe your a great candidate for surgery!
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Hi Crickett,
I was also recently diagnosed with bone mets to sternum and T1 vertebrae. I have a new onc, who is taking things a little slowly, and will be waiting for the results of a PET scan he's scheduled for me at the end of April, which he will use to compare with the PET taken just before Christmas, before he makes his recommendation for a treatment plan.
So....since I'm on my own for a while, I've decided to take the Phoenix Tears recommended by my naturopathic oncologist, as my new onc gave me a prescription for medical marijuana. The Tears are the ONLY treatment I will have between my last PET scan in December, and the next one at the end of April.
If I am showing ANY improvement at all, I will continue with the Tears as there are no side effects
I will post about how it manages the pain, and any other benefits I receive.
Take care, and big hugs
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