Lumpectomy Lounge....let's talk!
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Molly, Dr. Somlo was one of the dr I asked my BS about. She actually recommended Dr. Li as my MO. I have an appointment with him on July 17 to get the onco results. My primary tumor was grade 2 and then the "debri" they found was rated grade 3. My Ki 67 said "up to 20% of cells are positive for Ki-67" I know that is right on the cusp of being high so adds to my worry. Nodes were all negative. I'll also go in on July 14 to genetics to get the results of all those tests. Thanks for the recommendation about the second opinion. Did you stick with Dr. Somlo? I felt a bit incensed (actually I chuckled) when I was referred to Dr. Li, as he is their "geriatric" MO. I'm 64 but thought, Oh hell no! :-) Anyway, I appreciate learning from everyone's experiences.
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Dara, I would think a geriatric MO would be a good thing. He is probably more current on the types of ER+PR+ cancers that older women get, where many of them are focused on the HER2+ and TN cancers. And he may be much more in tune with the issue of benefit from chemo for you. I have to say, I am doing better than most of my buddies on the June chemo thread right now, in terms of SEs, crying, etc. Sometimes it is a benefit to be "geriatric" , lol! I think I'm the oldest one on the June thread.
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Moondust, I know what you mean. I researched the dr and while he looks like he's 18, is highly credentialed, did med school at Cornell, a bc fellowship at Sloan Kettering, and I'm sure is very up on all new treatments, etc. I just laugh because in our minds, I'm sure none of us think of ourselves as 'geriatric." The connotations make me think I should break out my walker from all my joint replacements. :-) I'll be fine and will certainly do chemo if recommended. Whatever it takes, right? I see that you did radiation first then chemo. I was thinking the reverse would occur. Still learning for sure! Thanks, I also sure hope your good luck with treatment continues. My sister had several rounds of chemo and did remarkably well, especially the first round. Never did get sick once, although did experience neuropathy with one of the drugs.
Have a great weekend. I love the hat in your photo. Is it one with bangs or your own hair?
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Dara, I know what you mean about "geriatric" - it sounds sooooo old! I'm almost 71 and do fall into that category but I'd rather be a senior citizen. Another word that drives me crazy is "elderly" - to me that is more of a physical condition where you are frail, not age based. Oh well. I do agree that maybe the geriatric MO might be best since we seniors do have differences from our younger sisters.
HUGS!
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Dara, I had already done my first few days of rads, after the MO told me I didn't need chemo. Then, while I was hiking that weekend, I had a very visionary moment telling me I really needed that chemo despite what my young and inexperienced MO thought. I told my RO at my first weekly appt, and he said no problem, there is no reason you can't have chemo after rads. So that's the way it happened! Well, eventually. The MO still didn't want to do it unless I got a second opinion that agreed with me. I was delayed by getting the second opinion because her office sent the paperwork to the wrong place! She was visibly annoyed that the second opinion disagreed with her, but I'm getting my chemo. I will be changing MOs when chemo is done, but didn't want to chance another delay.
The photo is my own bangs, now much wispier. When DH buzzed my head I told him to leave the bangs until my fake ones arrive. There's enough left to look like hair when I smush them down under a hat or chemo beanie
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Moondust, that trust factor is paramount and you obviously don't have that with your current MO. I totally get your decision to not do anything right now, wise I think.
HUGS!
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LG, my BS and MO said that anything node-negative <1.5 cm is Stage IA. Peggy & Dara, when I had Gordy at 33, my chart listed me as an “elderly primipara,” because I was over 30 at the time of my first full-term pregnancy! And my sister’s pregnancy at 42 was listed as “geriatric!”
Peggy, do they still have those lovely waterfalls downtown?
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Dara, I really liked Dr. Somlo but my IPA will not let me go to the City of Hope campus. I have to go to a satelight location. I love my BS through that location but I am very lukewarm about my MO. I think after I finish seeing my BS I will probably change doctors. Dr. Somlo was very helpful and spent quite a bit of time with me. He also talked to me about diet, exercise how their recommendations for chemo are changing. He said if I had come even two weeks earlier it would have been a given to get chemo with positive nodes. Now they tend to go by the oncotype with 3 positive nodes or less.
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Thanks Sandy. I always figured they might have gotten it wrong. Maybe they went by the measurements of what the surgeon took out? Who knows! The mammogram, diagnostic mammogram, and MRI never totally agreed on size. Had my follow up with breast surgeon, and I have to say, I'm much more comfortable being felt up by 80 year old surgeon than the young good looking one that did my surgery lol! He said have follow up at end of December (mammogram) - that puts me 7 1/2 months after completion of radiation and that he thinks I would be ok not to do the right one now, just to wait and do them both at the same time. I have paid deductible for the year, so he said I won't have to pay anything and they could schedule the next one after January first of the following year and go a year without paying a deductible! (As long as things turn out fine. I just have to call pcp to schedule the mammogram. Don't know why I always thought the surgeon would do that.
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Sandy, the beautiful falls are still downtown. Spokane is quite pretty and quite toasty right now. My allergies are annoying. Lots of different things to react to. Oh well. I'm happy and I can take loads of Benadryl
HUGS!
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Dear Moondust: I'm glad that you are feeling well. You are half way done with chemo. Yay! I am so sorry that you have to make the appeal to your insurance company. I had to fight with my insurance company too and it is not fun. Hopefully, you will get your refund quickly. Good luck.
Dear Dara: The waiting and worrying is so difficult. My Ki-67 score is 21 which is 1 point in the high range. My MO was not worried about it. I had a low oncotype score and oncotype trumps Ki-67. I am praying that you have a low oncotype score.
Dear Peggy: I am glad that you will finally be closing on your house. I also hope that you get all of your belongings soon.
Dear Molly: Wow! What a story. You would have had chemo if you were dx 2 weeks earlier but didn't because a new protocol was discovered in the nick of time. You are so lucky.
Dear LG: You explain things well.
Dear Sandy: Wow. It is amazing that you were considered old when you had Gordy and your sister was considered geriatric. Times have definitely changed.
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Was able to make an appt. with my ophthalmologist for a week from Tues. Probably not enough time to do my cataract surgery (the earliest I could would be Fri. the 15th, but I think that’s too close to our July 20 departure date). Gonna be a big week--getting my mani & hanging with Sloan on Mon., eye surgeon Tues., hand surgeon (cortisone shot) Wed., gig Thurs. aft and wine dinner that night. Nothing much for next week, except that one of Bob’s patients who works in the White Sox’ front office gave us skybox tickets (with a coveted parking pass) for this coming Wed.
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Sandy, I just have to say this. You are awesome on the boards and explaining things so well to people. I usually don't respond often, because you do it so well!!! Thanks for all you do helping everyone out!!
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Went for my 6 month visit to my MO --All good news! My CEA tests is still elevated to 4.9 (and I'm a non smoker), but my MO said he thinks it must be a benign condition in my gut and wants to stop doing CEA. He said he doesn't order it because it is soto unreliable, but since my other MO started the order he feels like he should keep doing it for a while. But, all the tests were in normal range, even the RDW. Whoo hoo! Remission!
Dara - my ki67 was high at 27%, but my oncotest score was 13. I started chemo, but I quit after chemo #3 when I found out my score was low. Grade 3 usually bumps up the oncotest score, as does a low PR number, and negative nodes lowers the score. I know you're scared --I sure was today for my doctor's appt!!!!!-- but the reason grade 3 or low PR or genetics increases the oncotest score is to make sure you clearly fall into the chemo or no chemo group so the patient and the doctor clearly know the protocol. The most difficult score, of course, is the intermediate group because the doctor and patient have to decide. So, don't think of the Oncotest score as a bad thing. Please, it's a good thing so you get the right treatment! I was being over-treated, and Moondust was being under-treated...and we live in the same county! So, I know you are scared, but try to change your mindset to being thankful that we have the Oncotest so the doctor doesn't have as much room for errors. We want to attack this cancer in the most effective way possible! You can do this!
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Sandy you are going to love Sloan!! You look so young I don't know how anyone could call you geriatric, same with you moondust. Sometimes I feel geriatric though.
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Sloan, Woo HOO!! So very happy for you!
Sandy, you have a really busy couple weeks coming up. Enjoy the Sox game and the parking pass (that almost rates being "priceless."). I'll second what a good job you do of explaining things!
HUGS!
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Sandy, ditto again for all the info,
Sloane, thank you also for all the info, and congrats on your tests! I know I'm actually lucky to be able to have the oncotype test. I see the posts from women in Australia and some in Canada who don't have it available. For me, both genetic testing and oncotype was just a given. I've always tried to face things head on, with as much info as possible, and I know this is no different. I'll take on your approach that either way it's a good thing as it's going to pinpoint exactly what I need. I'm staying busy and just focusing on fun things since there's nothing else I can do until results are in. Last night had a lot of fun with a photography class at the art museum here. Tried to keep all the manual terms straight, and learn to use the meter, aperture, ISO, and shutter speeds. Then we learned how to use back lighting to create cool silhouettes. Next week have 2 more classes on Tuesday and Wed, with the 4th as well. Then a class on Lightbox and a copper bracelet class later in July.
Hope everyone has a great holiday weekend.
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Sandy - So excited about meeting you! I'll PM you my phone number so we can text details when I get to Chicago.
Molly and Octogirl - You two still up for a road trip when Moondust is out of chemo and feeling good? Molly, when is your surgery? Was it end of July?
Dara - So glad you like your photography class. It sounds like it will keep your mind focused on something else! I was up in Mammoth/Crowley Lake for 12 days, and I really want to take a geology class now. Keeping busy and living life are what keep me going. I tend to hyper-focus on the cancer, so I really enjoy traveling to keep my mind on other things. Also, as a side note, I confessed to my son and my husband that I would probably go on some type of anti-depressant the next time I had to wait a long time for test results. I just got too anxious. My surgeon and my PCP both asked me if I wanted to take something, but I declined. Only you know your inside feelings. When I was home I had time to think about cancer, but I took a 6 week vacationin April/May and hardly ever thought about cancer. I'm glad you can figure out early in this process what works for you
After being gone for 12 days up to my Dad's house, my bed last night sure felt good. I'll tell you nothing makes you sleep like good test results and a good bed! !
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Sloan, you and Sandy have a great time. Sandy is great fun. I'm glad your vacation went well. It is nice to be home.
HOORAY! My furniture is to arrive Wednesday or Thursday. Just a few more days of roughing it. The pets are excited because then we can snuggle again (besides in bed). And I'll have clothes and kitchen stuff!
Happy Fourth!
HUGS!
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Yay on the furniture arriving! Now you can putter and set things up in your new home. I love to putter. The cat was wondering what happened to the couch, I'm sure!
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Sloan, I think it will be awhile after the furniture arrives before I can putter. I have tons of boxes to unpack. Some will go quickly (like clothes). Others like my books will wait until the mood strikes me. Kitchen will likely be the hardest since I still don't know where I want stuff. The garage will likely be filled with boxes. Need to get a couple plastic shelving units for storage. The garage is dry and with only one car, I have plenty of room (good thing since I don't have a basement for excess stuff!).
Kitty and doggie both will be happy to have the couch back!
HUGS!
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Sloan, my surgery is 7/22. I had hoped for earlier in the summer but my PS does his charity work out of the country in the summertime. I am catching in between trips. My BS will do my follow ups in stead of the PS. I will start fills after he returns. Peggy, I bet the clothing is the thing you miss most! I would love to do the road trip but not sure I can afford the time with two surgeries. About 8 weeks after this one I get to have my exchange surgery.
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Molly, I can see how difficult it would be to go on the road trip. That's a lot of time off already. And yes, clothing is a huge "miss" for me as well as my kitchen stuff. Furniture would be lovely, too.
HUGS!
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Peggy, Alice, Molly and Octo - Want to plan for when it cools off and kids go back to school (and you're all healed up, Peggy is out from under boxes and Alice is DONE with treatments)? It's nice to look forward to something even if we have to postpone and postpone and postpone. I just saw cheap flights to Seattle if the idea of a road trip scares anyone off!
I really want to go see Partick's Point (I think it's a CA State park) on my way to Seattle... And maybe taste some cabs and Mumm sparkling wine on way through Napa. Seeing Peggy would be icing on the cake. Can you tell I'm loving retirement!??
I have to say it again: I am so thankful that my blood tests were good and I'm in remission. (Remember I had the additional stress of leukemia, but that test was all good). So, if you get a bad test result or two, don't give up!!
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Sloan, that sounds like a good idea. I'd love for everyone to come. I know I'm way out of the way and not all that convenient to Seattle. I sure hope I am all unpacked by this fall!
Right now tackling the pressing problem of where to put the kitty litter box. It was in the basement in old home. No basement here. It's in my laundry/pantry which is also the access (with doors from the garage and to the kitchen) way. I have a doggie door to the garage but I'm skeptical of allowing kitty and probably doggie in the garage. What happens when I open the garage door and either of them is in it? I have carpeting in bedrooms and living room. Oh, the pressing question for the ages
HUGS!
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Sloan, if you are at all contemplating a tasting visit to Mumm’s Napa, I’d advise signing up for their Club Vivant. (You can always cancel shipments as soon as you get home). Your tasting is free, and you get priority seating in their cafe & patio--the wait otherwise can be >1 hr. (Nice cheese and charcuterie plates, plus snack pairings with the wine flights).
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Sloan/Moondust- give me a heads up if you plan to get together. I will take a trip to Fresno to see my mom and try to join you!
In the event you opt for Seattle, I'm certainly in. I live about 25 minutes from downtown
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sounds good!
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Sloan, I am so happy the worry is over! Inside I knew you would be fine, but now you can believe it too! I'm up for a road trip or whatever as soon as I can break free of the infusion tubes!
Sue, we'll keep you in the loop! Since Sloan and I are both close to Bakersfield we have a lot of opportunities for visiting. While I'm having chemo I am trying to avoid public places. But maybe we can find one that is not very busy. My son and DIL, who are stationed in Korea right now (Army), will be going to Seattle for his next duty station in the fall. I'm sure I'll be up there before long to visit!
Peggy, the lack of basement is a big deal when you are used to one. Not many basements out west as far as I can tell. We built a couple of sheds to store our extra stuff. I hope you find a good place to tuck the litter box. We used to have one in a bathroom. Now our cats have separate condos, each one with a litter box!
Feeling okay today as long as I keep it low-key and don't try to exert myself outside. I think it is 109. DH went to the Monterey Peninsula for his dream golf vacation this weekend. Pebble Beach, Spyglass, and Spanish Bay.
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Yay for the furniture coming Peggy!
I have so much already going on this summer and this fall (work, work travel, family camp trip, etc etc etc) that it is hard to commit to a road trip right now, at least to go as far as Spokane (much as I want to go visit Peggy!) I am going to be in Portland for work in late July and am planning to see some other BCO sisters while I am there...but I think that is as far as I will get this summer. Next summer is a whole 'other story! Maybe I will even be retired by then!
Also, I'd love to be part of a get together in Bakersfield! I am not that far to begin with, and have some business that will be taking me there fairly regularly for the next few months....
xoxox Hugs to all!
Octogirl
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