Lumpectomy Lounge....let's talk!
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ChiSandy, How is Letrozole? AI's do not share the same cell receptor as SSRI's. If I could figure out how to take something like that, I could stay on my medication. I meet with my MO on Friday and want to have some ideas to share.
I understand about having a secure residence and it is where ever you feel comfortable and at home. If living in a retirement community or near a hospital makes you feel safe, that is all that matters.
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Sandy, AMEN!
HUGS!
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Michelle, it's an AI and thus for post menopausal women (which you aren't). There are several ways for you to be put in menopause to take them. So it is an option. Definitely have a heart-to-heart with your MO and come up with a plan that works for YOU!
HUGS!
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On Friday I meet with my female MO. I plan to explain my situation with panic attacks and doing so well on zoloft., which all started after the birth of our youngest. I was the poster child for post partum depression, and will probably end up the poster child for early detection. That translates into about two years of speaking engagements on behalf of the hospital and mammography center.
I am watching the Hallmark Channel, and every other commercial is for cancer. My husband. tonight at a dinner, told his uncle that I had bc. I corrected him and told his uncle that I had "abnormal cells." I don't want to ride the cancer bus, but I can skitch a ride on the back or lay pancake style on the top. If someone asks me if I have bc, I will tell them I had "abnormal cells" which are currently no longer residing in my right boob.
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Not perfect, but very good...and glad I'm here
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Hi ladies
Thank you for all your replies. I checked with my MO office today the oncotypedx is not offered here in my province I am in Canada if I want to have it I will have to pay for it the cost is $4,380.00 which at this point is out of the question. I do have health coverage with my employer but it is prescriptions only but I will ask my MO if we can somehow get it covered it would really help with some decision making
I am on the fence right now about the Chemo.
After reading my last post I realize how disjointed it was so I will try to clarify some of it
If I go ahead with Chemo it will be 12 weeks of chemo followed by 5 weeks of radiation. My throat cancer is gone ( I get my throat scoped every 2 months) so far it is clear.
The feeding tube I Will probably keep through whatever treatments I decide on just to keep my weight maintained
I really don't care for my MO but she is the best for BC she knows her stuff and is very dedicated but is also extremely busy and has the bedside manner of a cold fish. My apt with her last week was at 10:30, I sat in the waiting room until 11:25 then waited in a Jonny shirt freezing my ass off until my RO came in told me that the Mico Mets showed up in 1 of the 4 nodes they took and the grade was high and tumor size was 9 mm. The MO finally came in at 1:00 said I was in grey area but due to grade 3 she was ordering Ki67 but was talking about 12 weeks of chemo she spent a total of less than 5 minutes with me and never examined me at all so I spent an Hour and a half half naked and freezing as the room as so cold
I will see her on the 22nd for the Ki67 results and what she recommends as a treatment plan
Thank you for all the support it really helps to be able to come here and discuss this with people who truly understand .
Charlene
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Will NHS pay for MammaPrint or Prosigna? The reason I ask is that "south of the border” (i.e., here in the States), ki67 is not seen as prognostic in itself, because it can vary and has not correlated with high OncotypeDX scores. It is considered an indicator for additional testing, however. Some of our “gray area” bco sisters (whose ODX scores were 20-ish, low-end of “intermediate” risk) were able to rule chemo in or out with MammaPrint &/or Prosigna. Can you get a second opinion, from an MO who is less brusque & condescending? Down here, ODX has been “standard of care” for at least 5-6 years now. Does NHS not realize that it is cheaper than a full course of chemo, and how even a partial course can devastate a patient who is already weakened and immunocompromised? (When you say you’re keeping the feeding tube, would that pose a further infection risk? Or would you need it for liquid direct-to-stomach supplementation--such as Jevity or Sustacal--in addition to soft foods by mouth, in order to regain your strength and maintain your weight)?
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Hi Sandy
I am not sure about the mamma print or Prodigal but I am seeing my BS tomorrow for a follow up and will ask her she is great and spends as much time with me as I need. Wish I could say the same about the MO I could perhaps speak with the MO I had with the trout cancer but they including my RO tend to throw it back to my current MO who is head of Oncology and has 35 years specializing in BC I think they are all scared of her in simple terms she is a bit ch but he best in he field here.
I was told this am from Oncology that Medicare will not cover the test because it is not a treatment. Unfortunately though our Medical system here is so called free (we do pay very high taxes for it) It does not cover a lot of things as I am finding out.
As for the feeding tube I am able to eat but no t enough to maintain weight. I have a pump and use something like ensure but it is double the calories of ensure. I use it at night so I eat during the day and let the Two calls go in overnight as I sleep. I had not considered infection I had the tube in through my chemo and rads with the throat and had the tube replaced in June. I have had o issues with it I have had it so long that it is part of me now .
Plus the end of it sticking out of my stomach looks like the end you would blow an air mattress up with so hubby and I joke that I am now his blow up doll thankfully we can still laugh.
Will keep you posted as to what the BS has to say
Thanks
Charlene
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Charlene, I agree with Sandy as far as getting a second opinion. We seem to have similar dx with exception that I didn't even have any micros in any of 5 nodes. My path report found additional DCIS grade 3 within the IDC tumor. My Ki67 was 2+ (marginal) so then the FSH test was done (more definitive) to get a neg result. But then even with the Onco and the Prosigna, I resulted in high risk. As much information as possible will help you make the decision. It's so hard that the onco isn't covered in Canada, and ridiculous that the tests cost that mush! The MammoPrint and Prosigna are both in the $5,000 range. I can only imagine what I've cost the companies so far, but I haven't received a bill for even a penny! Good luck with your decision. I know the wait is the worst. Do you only eat with the feeding tube? That must be a challenge. Take care, Dara
Sandy, or anyone else... do you know if Zoloft interferes with AIs or just Tamoxifen? I'm trying to find info on it and only see warnings with Tamoxifen. Thanks.
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thanks Dara I am going to speak with my BS tomorrow and see what she has to say. I can eat soft foods and do eat through my mouth 3 meals a day but need the supplements to gain and maintain my weight. I have been underweight most of my life and have never been able to gain so after the drastic weight loss with the throat cancer I need o keep it in till these upcoming treatments are finished.
Thanks
Charlene
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Dara, as I understand it, AIs work via a different enzymatic pathway from SERMs like Tamoxifen. SSRI antidepressants like Zoloft (as well as most SNRIs and SDRIs) interfere with the pathways used by Tamoxifen. That is why I am able to stay on Wellbutrin/bupropion (an SDRI) while taking letrozole, but would have had to change antidepressants had I gone on a SERM; dropping antidepressants is not an option for me, not just because I want to “feel good” and resist cravings, but because I have a personal and family history of clinical depression. Over the years, all my primary care docs said that was the only type of drug they’d never suggest I drop--even the “integrative” MD who wanted me to drop my GERD med and substitute deglycerrhized licorice.
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Sandy, licorice for GERD? Huh? Where the heck did that come from? deglycerrhized? Okay. Well, learn something everyday.
Charlene, just because your MO is the best BC MO in the world doesn't mean he/she is the best one for YOU! You have the right to have a doctor who will listen to you! Sometimes docs will slow down if you have a list of WRITTEN questions on your clipboard in front of you, pencil poised. I did that nearly 50 years ago with my PCP when I was pregnant. He would hurry, not intentionally. The minute I started bringing my list of questions, he slowed down and listened. I was his patient until he retired 45 years later. Now I do that with every doctor I go to.
HUGS!
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Peggy,you speak the truth. My first MO was considered to be one of the best in the city. He is head of oncology at one of the biggest hospitals in the area. Came highly recommended, too.
This guy was a bozo. I was put off after the first visit, but I thought it was just me so I went back for a second visit. Nope, not me. He really IS a bozo. He gave me a prescription for Arimidex, told me to come back in 6 months, and all but patted me on the head before I left. Nope, nope, nope. I found another MO at a different hospital, also highly recommended. When she looked at my records and my gene mutations, she immediately changed that plan to chemo, BMX, and complete hysterectomy. I had already done a lot of research and knew her recommendations were right for me. So far I have had the chemo and BMX, and I'm scheduled for the hyst next month.
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Poodles, the right doctor can make all the difference in the world as you found out. The "best" isn't always the best. They think they know it all and don't consider that YOU might be different and not fit the mold.
HUGS!
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Changing the subject, can I just say how sick I am of this diarrhea? If you're grossed out by poop discussions, better to move on now...
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.The diarrhea is better than it was, but still bothersome. I went to the GI, who put me on a cholesterol med, of which the main side effect is constipation. I've never been constipated a day in my life, so it's a good fit for me. At this point I'm having stools about every 3 days, which is a happy circumstance because it was every day. Sometimes they're almost normal, but 50% are still diarrhea. I'm still having a lot of stomach ache with it. I may need to take some Imodium, just get more control over this.
It's a big pain when I'm on the road doing my home visits. At least the urgency is better. Having to find a handy gas station or fast food place in a hurry can sometimes be a problem, especially when I'm out in the middle of nowhere. Now I get some symptoms that let me know I need to find a bathroom, but it gives me sometimes 30 min notice, so that's a LOT better.
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Did your doctor say anything about irritable bowel syndrome? It can manifest as constipation, diarrhea or alternating between both. And do you have gallstones? That can account for the pain; or if like me you no longer have a gallbladder, your digestive system has a tougher time handling fat; so if you eat too much of it, it gets excreted as frequent or loose stools. If I have to poop seemingly after every time I eat something, I eat a little leaner.
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Poodles, glad things are more under control. That has to be a relief to have some notice anyway. I'm sure it would be nice to figure out what the heck is going on.
HUGS!
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if you're using imodium, there is imodium multi symptom.. it helps the other things that go with this.. I like it better then just the regular imodium
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I have had IBS since I was a teenager, diarrhea-type. No gallbladder. The GI doctor suggested that I may have microscopic colitis. The only way to know is get biopsies during a colonoscopy. I haven't been able to schedule it before my hysterectomy date, so it will have to be sometime in Dec. Merry Christmas to me. In the meantime, I have contacted my doctor to let him know that I have had some improvement, but still having diarrhea.
I do find that certain things tend to make it worse--bread, pasta, milk, ice cream, vegetables, fruit, and spicy food. About the only thing that doesn't set me off is meat. I was in a Indian restaurant with my DD earlier this week (what was I thinking!) and had to go to the bathroom twice while I was there. And then I had to cut the visit short because I couldn't get things under control. I just needed to get hoooooome~!
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i just got my first appt with my MO.. on the 19th so have some time till then
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Saw my BS today, husband went with me and then I sent him golfing. BS uses different terminology that this site uses. Clean margins, no node involvement, was a bit bigger 2.45 centimeters at the longest tip, strongly ER positive 95%, PR positive 80%, Her2-. Which of the stages or grades uses the Nottingham scale? I see an RO on Thursday, and MO on Friday. Will probably want Oncotype test. My doctor uses the TNM model, which would be T2N0M0 for me. The 2 is for over 2 centimeters. What do you girls think? Feeling a bit bummed. Also taking doxycycline for irritation from the steri strips.
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Michelle, no thoughts from me. I'm sorry. Others know so much more.
HUGS!
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Well, I'm just so thrilled. I get my Medicare Part D from AARP. I received notice today that my new premium will be 22% more
Went from $58.80 to $72.20. What's interesting is that my co-pays have not gone up on any of my drugs (or the only antibiotic I can take and that one may have gone down). HUGS!
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Peggy, I get Part D from AARP also but haven' been notified of any change. I guess something to look forward to!
Michelle, the Nottingham score is a way to evaluate the grade (or aggressiveness) of the tumor cells. This is a good link to John Hopkins that explains quite a bit:
http://pathology.jhu.edu/breast/grade.php
My path report listed my Nottingham score as 2. It also lists my nuclear pleomorphism score at 3. I'm glad they are ordering the Onco test for you. The only hard part is if you fall in the intermediate range with it. This site has several really good articles on the onco test. My score came back intermediate, and then they requested the Prosigna (very similar to MammoPrint) which gives only low risk or high risk prognosis.
The clean margins means when they removed the tumor there is an acceptable margin with no cancer cells in it all the way around the tumor. Very good news. It's also very good news that you are strongly positive for both ER and PR. That means the cancer will respond well to estrogen inhibitors. What other questions do you have about what the BS said? I'm sure there are many of us here who can help. What was your Nottingham score? Dara
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Let's see, my Nottingham was a 2 because it was just over 2cm at 2.5cm. I don't think I should be categorized the same as a 5cm but it is the way it is done. I am glad to get an oncotype test.
Stage 1A means that it is just in the breast, not the nodes. Right?
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Michelle, the stage, 1A, in your case, and also in mine, refers to the size and invasiveness of the cancer tumor. This is another great article from this site that clearly explains the differences:
http://www.breastcancer.org/symptoms/diagnosis/sta... The 1 refers to measured size, and the A refers to the no node involvement.
The Nottingham score refers to the grade or how quickly the cells are dividing and multiplying as well as how differentiated the cells are from the normal breast cells. If your Nottingham score is 2, it means the cells are not that aggressive in multiplying or growing, Unless they meant that the score was a level 2. Do you have a copy of your pathology report? Mine was 6-7 which means mine were growing fairly quickly. I go to City of Hope in LA, and they are now believing that the grade of the tumor is actually more indicative of a prognosis for recurring in the future. I was also 1A which I thought definitely meant no chemo. My original grade was 2, but they did find additional DCIS debris which was grade 3 in the pathology. Your path report will list a great deal of other information. about what they found. My tumor was actually smaller, 1.5cm, than originally thought. What I did was to take my report and ANY term I didn't understand I started researching and defining, first on this site, and then on other REPUTABLE sites. Be careful where you research. Then there were still a couple of things I didn't understand or couldn't put in perspective so I had a whole list of questions when I went back in on my next appt. We can also PM if you wish and I'm happy to try to help figure anything out. We are all on such a huge learning curve, but I really believe knowledge is power.
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My overall feeling today was my numbers are good, but oncotype test will determine path for treatment. So what is the point of all these numbers, if I still have to do oncotype test? I guess I am going to have to accept that this is early, it is not large, great margins, hormone receptive and no nodes. As far as getting into how doctors stage and grade, it is all different. My doctors are so particular about every single thing, which should relieve me of the investigator duty. So, until the test is done and a plan is made, my brain is going on vacation and I will focus on my design work (which is fun.) I have lost 7 pounds since I was diagnosed on 8/8 and I am trying to eat well and get my weight down. Also I went off of my daily 100 mgs progesterone that I had to take since my daughter was born, as my body stopped making it. I eat mostly veggies with lean protein. I don't eat dairy or wheat. I love my veggies, praise Jesus!!!
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Dara, I'm sure you'll get your booklet and notice in the next few days.
HUGS!
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actually Michelle, you are stage 2A with a tumor over 2 cm. No nodes and clean margins is great news.
Stage IIA describes invasive breast cancer in which:
- no tumor can be found in the breast, but cancer (larger than 2 millimeters) is found in 1 to 3 axillary lymph nodes (the lymph nodes under the arm) or in the lymph nodes near the breast bone (found during a sentinel node biopsy) OR
- the tumor measures 2 centimeters or smaller and has spread to the axillary lymph nodes OR
- the tumor is larger than 2 centimeters but not larger than 5 centimeters and has not spread to the axillary lymph nodes
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Michelle, your Nottingham Score has nothing to do with the size of your tumor. It is what determines your grade after final surgical pathology. There are three components--tubule formation (what proportion of your tumor cells are tube-shaped), mitotic rate (how fast the cells divide), and degree of differentiation (not only how normal the cells look but how similar they look compared to each other). Each component is given possible score of 1 to 3, with 1 being most favorable and 3 being least favorable. (More tubules is better, so a high degree of tubules gets a 1; slower mitotic rate is best, also getting a 1; and well-differentiated cells (looking less abnormal and looking less identical to adjacent cells) also gets a 1. Your points are added up to get your Nottingham score--you can score anywhere from 3/9 to 9/9. 3-5 is Grade 1, 6-7 Grade 2, and 8-9 is Grade 3. Tumor size, though, helps determine your stage--the other factor in that being nodal involvement. Anything 2 cm. or smaller with negative nodes is stage IA--whether it’s 5mm, 1.3 cm or 2 cm. Therefore, your tumor would be considered stage IIA because it is over 2 cm but node-negative, with clean margins. Stage IA, node-negative clear-margin, grade 1 or 2, 1 cm or smaller ER+/PR+/HER2- tumors are assumed to be too slow-growing to respond to chemo, so OncotypeDX usually isn’t ordered. Larger size (>3cm), grade 3, and more than 3 positive nodes are considered aggressive enough to respond to chemo, so no OncotypeDX there either. Because of our tumor sizes but also good pathologies, you and I are in the “gray area” for which OncotypeDX was developed, to help oncologists determine whether or not to recommend chemo.
You are already doing everything right. (Tough not eating corn down in “cornland,” though). I have been cheating, and have to stop. I am supposed to eat low-sugar fruit (berries, melon, stone-fruit but no grapefruit due to taking an AI), low-sugar/non-starchy veggies (which means no potatoes, corn, beets, carrots or parsnips--but winter squash, pumpkin & sweet potatoes are okay), full-fat or reduced-fat dairy (low-and-non-fat have too much sugar), all the animal protein I want except that fish should be the primary source and cured or smoked meats should be kept to a minimum, and common-sense amounts of all fats, except trans fats which are a no-no. In other words, I should be eating mainly “dead animals & leaves” (and yes, I’ve recorded a song about it). No sweet wines or cordials (there goes the limoncello). Before bc--which I define as “before that abnormal mammogram”--I stuck to that diet for two and a half years, having a glass of wine (preferably red) per day unless I didn’t feel like having it. What I need to do is go back to that plan--with the wine reduced to a pint a week, or a half-glass of red wine per day. (My PCP would rather I do that than have three glasses per week). That diet took 50 lbs. and 4 dress sizes off my frame. I’ve regained about 10 lbs., and have managed to keep it steady at my pre-cruise, pre-letrozole weight....but the portion control and exercise required to do that is much, much harder than when there was nothing screwing up my metabolism.
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