TRIPLE POSITIVE GROUP
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wabals - no worries and no need to apologize! It happens to all of us at one point or another and my only reason for a correction is for anyone else reading or lurking who might be confused.
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SpecialK-
Thank you so much for your detailed response of your follow-up care. In addition to the information, your writing conveyed that you feel comfortable and grateful for the extent of your follow-up care. Certainly your doctors sound attentive and competent.
I'm located 2 hours away from my center. During my weekly taxol I was wholly committed to going to Boston and doing what I needed to do, sometimes twice a week. However, perhaps because I'm 3 years out from dx, and 1.5 since finishing Herceptin, I just want to put the whole thing behind me (head in the sand)- which means having as few Dr.'s appointments as possible.
When I see my amazing MO tomorrow, I will ask her how much she thinks I need to see my BS, or RO, it at all. I'm also curious if she has her patients do PET/CT scans etc. I hate all those scans (like my routine breast MRI tomorrow) because they scare me. But I also believe catching recurrence or mets early would make a difference so it's worth doing even though I hate the whole experience. However, I'm going to try to feel more positive about the follow-up care, the goal of which is to prolong my life; I will try not to not feel too resentful or scared.
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Gretagirl my oncologist put it to me this way. About 40% of the women with my diagnosis and age only need surgery. Problem is we don't know who that 40% are. Doing chemo and Endocrine therapy reduced my risk an additional 44%!
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momwriter - if I did not have ongoing recon issues I probably would have let go of the appointment with the BS, I didn't have rads so I don't see an RO, but I kind of feel the same about that - past the early window for HEr2+ recurrence I might let that one go too, unless I was having any residual rads issues. As far as scans, I have not had a routine full body one since probably the end of 2012 - so it has been at least a couple of years. My MO does not do ongoing screening scans - only when there is a problem, such as the hip issue. I am fortunate to be very close to my center so doing the every six month appointment with blood work just before is not a travel burden. I actually still have my port but the MO said to have it removed by the plastic surgeon in the next surgery, so I will not have to come in and have it flushed. This weekend marks the five year point from diagnosis - I guess it is time!
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Anyone know what the chances are of me escaping radiation? I had a mastectomy, and am undergoing chemo and Perjeta/Herceptin (the latter for a year). I had no node involvement but did end up with multifocal tumors (nothing like a surprise tumor, is there?). Official staging was IIA.
I'm supposed to meet with an RO at some point before I'm done with chemo. . . . I guess I'm asking here because I'm hopeful that the mastectomy, chemo, and Tamoxifen for 10 years will be ENOUGH.
Thanks in advance.
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kate - there are a number of us that did not have radiation. Tumor position - proximity to chest wall and/or skin, margin size, LVI, nodal status, all play a part in the determination of whether rads is needed. I really didn't want to do rads, which is one of the reasons I elected BMX, along with the fact that I image so poorly, I could not rely on it going forward. I had ALND, with two positive nodes, but both my MO and BS did not recommend rads, based on surgical removal and chemo/targeted therapy. I would be curious whether multi-focal disease is more of an indicator for rads - even if you have good margins around each mass.
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KateB79 I didn't have rads although usually recommended for a tumor of my size. I was in a gray area and got a pass from my rad oncologist. I too had no nodes stage IIB.
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Kate, I was also multi focal. Rads was not recommended because of the MX, clear margins, and negative nodes.
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katieb79 just had my RO consult today. Like said there are several things. Tumor size, margins, nodal status, scans. Let an extra set of eyes go over everything. No rads for me!! He was thorough and asked about my treatment plan allowing plenty of opportunities for questions. Go and get another perspective.
Specialk, time to be deported? I am glad you never had issues.
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Thanks, ladies! I appreciate the info. I'll get my consult once I'm done with chemo and, based on your info and my surgeon/MO, I'll go in hoping for no rads. My surgeon got clear margins on both tumors, both were far enough from my chest wall that my MO hasn't been concerned, and negative nodes--again--continues to be the best news I've heard in a while re: my own DX.
My next TCHP is today, assuming that my labs look good; I'll be halfway done (3/6). Really looking forward to December and Herceptin-only or HP-only infusions. There's something else I never thought I'd say, that I'm looking forward to any kind of infusion. . . .
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KateB your DX is so similar to mine. I had mixed tumors however I was grade III in the DCIS tumors. You are in my thoughts Special K I wish you were here to read my reports!
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I'm looking for sources of nutritional information. What foods should I avoid and what foods are particularly good to eat? Does anyone have any good resources to point me to?
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SpecialK-
Congratulations on 5 years!!! That's just great.
Thanks for sharing your experience. I hope your next surgery is your last for a very long time!
My MO yesterday said that because I have to see her every 6 months for the clinical trial followup protocol,I don't need to see the BS or the RO, (unless something comes up of course). She also recommended I stay on tamoxifen given my age (50) and the outside chance the period could come back- she also sees Herceptin (and perjeta) as the silver bullet for Her2 people.
Thanks again for helping navigate it all.
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momwriter - thanks! Unfortunately, the next surgery will not be my last as my PS will hopefully be able to place another expander - I will have to go through the expansion process again and then exchange for an implant if all goes well. Because things are such a mess on the left side I think it will require some more fat grafting after exchange to make things look presentable. Glad you can pare the doc appts down to a manageable level.
jumbled - thanks for the good thoughts, but I am not having any surgery yet, probably not until the end of the year. You can PM anytime if you want me to look at any of your report info.
twiggy - there doesn't seem to be much hard and fast food info. A lot of people like David Servan-Schreiber's book, Anti-Cancer, A New Way of Life. There are also some threads on BCO, here are a couple:
https://community.breastcancer.org/forum/79/topic/...
https://community.breastcancer.org/forum/78/topic/...
Here is another site some people use. Also, just Google breast cancer diet and you get a bunch of info:
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Congrats SpecialK. I can't believe you are still dealing with recon 5 years later! I feel I've been with you the entire time
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Well, it's time for the next echo (in two weeks). Fingers crossed that the old ticker is strong enough to keep going with Herceptin/Perjeta! No reason to think it isn't, but I'm developing test anxiety. . . .
twiggyOR, check out a cookbook called the *The Cancer-Fighting Kitchen.* Fantastic recipes and tips.
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Specialk congrats on 5 years! In December it will be 4 for me. My regimen is close to yours, but my B'S quit so no B'S visit. However, my PS took over as hes VERY familiar with my implants! LOL My MO sees me very 3 months yet because of my low magnesium issues still. Also I've never had a scan and my Dexa was still this side of osteoporosis. As usual, every MO is different. Actually just saw my PS this month for some scar tissue along the incision line. Thank goodness that's what it was. And y PCP saw me very 3 months during cancer tx and now back to 6 months because of my diabetes.
I don't need rads as i had a BMX with clear margins. But as my tumor was Her2+ Definitely chemo.
Much love to all
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Moonflwr912 I was osteopenic before even chemo. After chemopause I took a big drop but still osteopenic. My MO does dexta scans every year when you are on the AIs and not being treated for osteoperosis. Now that I have osteoperosis and it's being treated she only scans every 2 years.
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Congrats, Special K! Hope you get your reconstruction finished soon.
I'm on Zoladex to suppress my ovaries so I can take Aromasin. It means getting a shot at MO's once a month. If I get an ooph, I can get off of Zoladex. Has anyone had difficulties convincing their insurance companies to pay for an ooph? How much recovery time is involved? Thanks!
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Thanks all for the congrats! Seems like a lot of time has passed, but it also seems like yesterday!
lago - I know, right? Seems endless, but I did have a couple of years with no issues, then when I had the allograft repair last year everything went to hell in a handbasket. That surgery spawned four more, with at least another two coming - and that is if everything goes perfectly - what are the chances of that happening? Lol!
elainetherese - I have a BRCA1+ friend who had a robotic ooph after her BMX with recon and was back to work in a relatively physical job, on her feet a lot, within two weeks. Her insurance didn't hesitate to pay, even though she was TN, but I would guess that was because of her BRCA status. I would think if your onc is recommending it you could get a pre-auth so you would know for sure.
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Special K: Yes, a pre-auth would seem to be in order. I'm seeing my OB-GYN this week, and his website brags that he is an expert in daVinci robotic assisted surgery. I never paid much attention to that before because the only time he has ever operated on me was to give me a C-section. I will ask him about how much recovery time his patients typically need.
Re: reconstruction, I don't know if there is a record for number of recon surgeries, but you may very well hold it. Here's hoping the next two do go perfectly!
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elainetherese - I would also think with being pre-meno and ER+ would be an easy approval for ooph. My friend did bmx with TE, fat grafting and exchange and the ooph was easiest by far. And, yes, it seems like I should contact the Guiness Book with my number of surgeries - lol! I actually know someone who has had 18, I'm hoping to stop short of that, but I may not, as that is only four away
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I have had some tingling in the tumor area and always thought "great!" the chemo is working, those cells are dying! But the last 24 hours it has ITCHED. It is driving me crazy. Anyone else have that SE?0
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Elaine, I had a laparoscopic ooph/salpingo yesterday morning. I've felt pretty good. No running down the street though! I went to my DS two baseball games today. The incision at my belly button is a little sore but the other two don't bother me at all. I was told two weeks for recovery although I could get back to most normal things within a few days.
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Thanks for your sharing your experience, Mommato3! Glad to hear it went so well for you. If an ooph is that low impact, I'll definitely consider it.
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specials you really explain thing so we can understand all. Had my 8th round of herceptin , have 9 more to go per my MO. He definitely wants me to get flu shot and pneumonia shot. And consider shingle. I am not fond of vaccines, so I will get pneumonia and Prolia shot, but slightly considering flu, and no shingles. With immune system being almost killed with these chemicals he thought it a good idea. I feel about 2/3 close to almost 100% but not there yet, fatigue is pretty compelling some times. Just hate to put anything else in my body. So just gonna take it slow for now. I only did 4 rounds of tcph b cause of side effects and other factors my MO felt I did enough to satisfy protical . Your MO is your guide in these matters..
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Jerseygirl927 I did get the flu shot. Was not offered a shingles shot. 6 weeks after my final chemo I got the worst case of shingles. I was still doing Herceptin but my reconstruction/exchange surgery was delayed another month… trust me you don't want shingles.
I never took any pain meds, didn't use the pain pump or even a tylenol after my BMAX with nodes removed on both sides. I did try to take narcotics for the shingles but they made me nauseous. Trust me you do not want shingles!
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Anyone here have muscle and joint pain and/or spasms subside after finishing herceptin / perjeta? Love, Jean
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Anyone have gum recession or tooth pain on TCHP?
I swear I have my first cavity....
Thanks
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Hi zj, my muscle and joint pain did lessen after I finished Herceptin (and possibly Perjeta- was on double blind study so don't know if I got it). I still have some on tamox, but it definitely made a difference for me finishing up- I also felt my energy was better. It's also possible that it improved because I was further out from chemo- taxol definitely was rough on my joints. Tamox still is but nothing as bad as taxol/herceptin was for me.
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