Any Ladies from the San Francisco Bay Area?

Dear Mariposa,

I just wrote you a long message that got deleted somehow. This one will be a little shorter.  I had no problems with my port - inserted by an Interventional radiologist via my Internal Jugular draining/port site at my inferior/superior vena cava.  I had no problems - a little irritation for about a week, but after that it healed well and I had no issues for 4 cylcles of CT with Neulasta.  I did have problems with the removal - a different IR did it and did a very sloppy job - huge, rough, organge sutures that were left in under the skin to dissolve, never did and have been picked and oozed out (dryly) by my breast surgeon, the IR who inserted it, and myself, but it's still irritated and the scar hasn't properly healed. I may have plastic surgeon open it up - take out the stiches and sew it back up again, but after my Total Hip Replacement and recovery which is next week.  If you are having problems now- go back to the IR or surgeon who inserted it and have it checked out. Dealing with the chemo is tough enough, without having to suffer more with an irritated port and you don't want it to get infected or blocked.

TLYM, my first message to you also go deleted. I saw John Lee at CPMC. He was part of the package with my surgeon Nima Grissom, who had trained with Lee to do IORT in Germany. Re:Rounsaville, Liz had a good experience with him, which is the best feedback.  I can't recommend Dr. Lee as he did the wrong procedure, which would have been avoided had I just had a pre-op MRI for proper sizing, and also because he never checked with the IORT people in Germany. 10 months after my procedure, my surgeon finally contacted them and they recommended I not get further radiation (WBRT), even after Lee and the CPMC tumor board had recommended that get it. I'm glad I waited. 

While I don't necessarily like all of the local decision leaders in the field regarding radiation, if, in your case, your statistics or clinical status are in anyway outside of the box in terms of the women studied in the various clinical trials, you should consider finding someone who can think outside of the box and try to extrapolate the most recent data/thinking in helping you make decisions about the best treatments for you. These are typically people involved in past or current clinical trials. In general, I also think getting multiple opinions is good, and making decisions based on how good the rationales and evidence are supporting their recommendations/opinions.

There are various different tests to help with the chemo issues - OncotypeDX, the Mammoprint, and perhaps some others. More and more people are going for the Mammoprint and I would look for some postings on this website about the issues and differences between them. I had a high OncotypeDX score, so I went ahead with the chemo based on that. Had I had a low Mammoprint score, I might have reconsidered not having Chemo. Again, it is complicated, and I think the issue of like and trust in terms of someone's fund of knoweldge are really different issues. But, it's hard to get a lot of info and figure out the best decisions alone, so if you have a friend or family member who is good at investigating and helping with decision making, I would recruit them.

Would love to meet with everyone, and not just for shop talk, but I am going in for a total hip replacement next Thursday and will be home bound for a while afterwards.  I had to go to the ER two days ago for irretractable pain in my left knee - thought I had dislocated it or torn something - luckily just from my left hip which I am getting replaced in 5 days! On a lighter note the EMTs who brought me home to my bed by ambulance last night were really cute and very sweet. 

Once I am up and about again, we could meet at a local restaurant at some central location. And once, when, if people are comfortable, I'd love to have you at my home or travel to meet you in your areas. 

Please keep me updated on how you're all doing. 

Warmest wishes and a big hug to all of you.

Chelsea

Sorry I've been absent - 9/27 5 days in surgery lost a lot of blood, transfused 2 units and then went into A Fib, then over sedated and required Narcan to bring me back, then 2 weeks in a SNF, then 3 weeks of home care and home PT. I was entitled to the benefits, but had to fight for them. Wondering if any other gals had problems getting skilled nursing or home care services you were entitled to.



Anyway, the good news is I'm 2 months out from my total hip replacement and finally getting out of the house with a cane (I had to work up to getting up and dowm my 18 stairs) and am starting out pt physical therapy. December is my 1 year post op screening - planning to do them all mammo MRI and US, since no one can agree, I had the wrong surgery, and noone really knows my prognosis - also because I have such dense breasts.



Would love to get together with all of you and would be happy to host a brunch at my home in SF in December or after the New Year, although I know it's not convenient for everyone. We could also rent a room at the Claremont in Oakland or a restaurant that has private rooms. I'm very flexible but would need advance notice to work around all my medical Appts. Maybe on a weekend . Big hugs to all of you and let's do it! Would also love to hear updates on everybody.



XoxO. Chelsea

Dear Mollydog,

So glad to hear the good news about your bladder. Did they tell you what's causing the bleeding?



I had my 1 year screening today - at UCSF- diagnostic mammogram on both breasts, ultrasound and MRI. Mammogram and US were clear and I'll get the MRI results tomorrow. My docs aren't there, but I had my 6 month screening done there as part of a comprehensive 2nd opinion in June so my plan approved my 1yr follow up studies there. They approved the multiple tests because I have very dense breasts, had the wrong surgery so no one really knows my risk of recurrence, and because none of the tests alone have adequate sensitivity and specificity.

I' m hopeful and will let you know.



I also need to get a bone density scan, as I' m on Aromasin. The surgeon did comment on my X-rays after my total hip replacement that there was noticeable bone loss in my knees! So, we'll see how the rest of them are holding up, although typically they don't look at the lower extremities.



I,ve had a lot of side effects with the Aromasin including muscle and joint pain. I don't know if I'll be able to tolerate it for five years or the threshold level of bone loss before they automatically discontinue it.