BBwithBC45--You mean at your annual exam he didn't do a breast exam?! For someone that's had BC?! I seriously think you need a new gyn! Mine does a thorough exam every year and then has me come in his office afterwards and just have a conversation where I can discuss any concerns or if I don't have any, we just chat. I truly love him! I think if you don't LOVE your doctor, you should get another. There are plenty out there and since we all have to now go to so many appointments, we should at least like and trust our doctors. I get a breast exam every year from my BS, GYN and MO so I have them spread out throughout the year so that if you combine those 3 with my mammogram (and every other year MRI) someone is doing a hands on exam about every 3 months. That gives me great peace of mind.

Annie-B-7-14---I'm not sure I could tell you the pros and cons of keeping the cervix in a medical way. I just know that my doctor said that with my thickened lining, ovarian cysts and enlarged uterus, he was very comfortable with taking everything to greatly reduce my cancer risks. I think that for a very small group there is the risk of prolapse maybe? This goes back to liking and trusting your doctor. Mine met with me repeatedly and answered every question I had so when it came time to decide, I was totally on board with his decision. And in hindsight, total removal was one of my better decisions. I feel great!

Oddly, aside from my very gentle and professional lady radiation oncologist, no doctor has handled my boobs since this whole thing began other than to look at the stupid cyst when it came bulging up. And I'm fine with that. I have become less and less tolerant of other people's hands on my body as the years have gone by. A pap test? Good GOD I'd rather have a root canal without freezing!

My boobs have always been lumpy like two bags of coal. I do not see how some doctor, who is completely unfamiliar with my boobs, is going to notice something that I myself have not noticed. Do they take a 6 week course in medical school called Boob Mushing? I don't think so. I think it is a false sense of security to think that a manual exam by a doc is somehow going to keep us in the clear. It is not. WE know our bodies / breasts better than anyone. And it's one thing to find the lump yourself then point it out to doc and have him second the opinion that it feels like a lump, but I place ZERO confidence in the physical breast exam of any doctor. To me it has zero diagnostic value.

In my own case PAIN alerted me to a problem. I felt around for months trying to find the root source of this endless, 24/7 ache in my breast. There was no lump, no thickening, no nothing. Just pain. It was a mammogram that found the problem because no amount of manual feeling could have spotted the weird situation I had going on. It left no physical clues. A doctor would have felt that boob and declared me fine, it's probably just menopause, typical hormonal boob ache, and sent me on my way.

I do appreciate the surgeon checking things out to see if the scar tissue is behaving as expected. The radiation oncologist was also feeling around looking for specific events. But these were different (in my mind) from just a general feeling around to see if anything stands out. So ladies (and few gentlemen) we must be our own line of defense and use the doc as the second in command. I read somewhere that the vast majority of breast lumps are found by women, not doctors. So when my doc does not examine my breasts, I do not hold it against him at all. The fewer times I have to take my bra off in a day, the better things go!

My lump was found during a manual exam by a new gynecologist. I would not have found it on my own and I could barely feel it even after she showed me where it was. I'm very grateful for her.

So at least in some cases, a manual exam can be a great diagnostic tool.

lynae, Although it could have been expected that I would be on an AI, my BS gave me information to make a decision. I chose Tamoxifen because I have a 10+ year history of osteopenia (currently stabilized) and did not want to chance the bone leeching from an AI. Yes, there are side effects from the T-- sometimes hard to tell the source of the brain fog but I do find it harder to concentrate than before, have to watch the constipation issue, and don't really know if joint aches and stiffness are due more to meds or the weather. That said, it is my understanding that AIs have an even worse reputation than Tamoxifen for causing joint pain...

Best wishes in Your decision making!

Nancy, constipation was one of the first side effects I noticed and seems to be a problem that crops up regularly. This is entirely new. Hooray tamoxifen.

lynae23,

Glad you are well.

I had a partial hysterectomy (still have my cervix, ovaries, fallopian tubes) in 2014, so it didn't make me menopausal (not even close,). I had uterine fibroids so my uterus had to go, after several other failed treatments. Chemo pushed me toward meno (or almost...not quite as of May). I am getting tested this week to see where things stand hormonally because my MO will switch me to an AI as soon as we are sure that I am menopausal. I am doing well on Tamoxifen--having gotten past constipation, dehydration-related leg cramps, sleep and other issues, So changing drugs is not what I really want to do BUT, my tumor was aggressive with high recurrence risk--depsite being node negative-- I want the best chance at keeping bc at bay. I remember that you were at MD Anderson too? I was just there for my mammo on my native breast, bone density scan and echocardiogram (both in anticipation of switching to an AI), before meeting with my MO. The labs on my Estradiol etc. have not come back yet, so I don't yet know if I will make the switch now or later. We need to be sure, otherwise the AI would backfire on me if I am not actually menopausal--actually increasing recurrence risk! I am most worried about the potential bone/joint pain because I teach! However, I going to give it a try as soon as I know that I am menopausal. If it doesn't work for me, there's always Tamoxifen to go back to (or other AIs).

Nancy, try magnesium for constipation. I find that taking it at night I am regular in the morning. Metamucil just adds so much fiber to your system, sometimes it is too much to take and can almost bind you up instead of relieving you. I don't think probiotics will help with constipation.

Nancy, the anti-constipation key for me has been lots of walking (goal of 12,000 steps a day), 2.5 to 3 liters of fluids daily and 2 servings of dried fruit each day--found no sugar added dried figs and dried mangoes at Costco. The dried fruit counts as part of my servings of vegs and fruits daily. Trying to not add any more pills or supplements to what I'm already taking!

Beaverntx, I don't exercise enough... I'm lucky if I get 5000 steps a day. I don't drink enough water either. If I drank 3 liters I'd be in the bathroom all day! Lol! I have dates in the fridge that I forget about too. I really need to get back on a healthier track.

Ah the brain fog! I’ve been off T for a month and it’s like the clouds have parted! Also, my sore joints and muscles are so much better. I see my MO Monday - not looking forward to it

Interesting studies I found regarding Tamoxifen efficacy/overall survival related to premeno women & BMI (body mass index).

See table below -- under "contraindicated" for BMI > 25 kg/m

My MO never mentioned this, and though I am not obese, I am overweight and this is something I will be asking her about when I see her in 2 weeks.

https://www.michigancancer.org/PDFs/Publications_Products/MCCExclusiveProd/PharmacologicIntervention.pdf

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Effect of body mass index on the efficacy of adjuvant tamoxifen in premenopausal patients

2014

https://www.ncbi.nlm.nih.gov/pubmed/27061527

RESULTS:

In both normal weight and overweight patients, the baseline clinicopathologic properties and the treatment history with radiotherapy and chemotherapy were similar and no statistical significant difference could be detected. Tamoxifen in combination with luteinizing hormone-releasing hormone (LHRH) agonist was used in 33% (136/408) of the patients in Arm A and in 22% (91/418) of patients in Arm B (p<0.001). Three-year disease free survival (DFS) rates were 89% and 87% in arm A and arm B, respectively (p=0.39). Three-year overall survival (OS) rates were 99% in arm A and 94% in arm B which appeared to be of significance (p=0.028). In univariate analysis no statistical significant effect of LHRH agonist usage on DFS (p=0.58) and OS (p=0.96) was found.

CONCLUSION:

Although BMI had no negative effect on recurrence risk, poor OS (overall survival) was observed in overweight and obese premenopausal breast cancer patients with hormone-receptor positive tumors who were treated with tamoxifen.

Effect of body mass index on recurrences in tamoxifen and anastrozole treated women

2010

https://www.ncbi.nlm.nih.gov/pubmed/20547990

https://www.researchgate.net/publication/44673163_Effect_of_Body_Mass_Index_on_Recurrences_in_Tamoxifen_and_Anastrozole_Treated_Women_An_Exploratory_Analysis_From_the_ATAC_Trial

Results: Overall, women with a high BMI (BMI > 35 kg/m(2)) at baseline had more recurrences than those women with a low BMI (BMI < 23 kg/m(2); adjusted hazard ratio [HR], 1.39; 95% CI, 1.06 to 1.82; P(heterogeneity) = .03) and significantly more distant recurrences (adjusted HR, 1.46; 95% CI, 1.07 to 1.61; P(heterogeneity) = .01). Overall, the relative benefit of anastrozole versus tamoxifen was nonsignificantly better in thin women compared to overweight women.

CONCLUSION:

These results confirm the poorer prognosis of obese women with early-stage breast cancer. Recurrence rates were lower for anastrozole than tamoxifen for all BMI quintiles. Our results suggest that the relative efficacy of anastrozole compared to tamoxifen is greater in thin postmenopausal women and higher doses or more complete inhibitors might be more effective in overweight women, but this requires independent confirmation.

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The predictive impact of body mass index on the efficacy of extended adjuvant endocrine treatment

https://www.nature.com/articles/bjc2013367

2013

Results:

In all, 634 patients (177 normal weight, 307 overweight, and 150 obese) patients were included in this analysis. Normal weight patients with additional 3 years of anastrozole halved their risk of disease recurrence (disease-free survival (DFS) HR 0.48; P=0.02) and death (HR 0.45; P=0.06) and had only a fifth of the risk of distant metastases (HR 0.22; P=0.05) compared with normal weight patients without any further treatment. In contrast, overweight+obese patients derived no benefit from additional 3 years of anastrozole (DFS HR 0.93; P=0.68; distant recurrence-free survival HR 0.91; P=0.78; and OS HR 0.9; P=0.68). The possible predictive impact of BMI on extended endocrine treatment could be strengthened by a Cox regression interaction model between BMI and treatment (P=0.07).

Conclusion:

Body mass index may be used to predict outcome benefit of extended AI treatment in patients with receptor-positive breast cancer.

Yes, that is troubling because I am certain I am in that higher BMI group.

Ok, according to the CDC, regarding getting live vaccines, those on immunosuppressive drugs (look at picture, last line...tamoxifen is noted....although stated it is LESS immunosuppressive than others...still considered immunosuppresive), should wait 3 months before getting a vaccine after stopping said drug, and waiting at least a month before restarting the drug after being vacinated.

I'm sure my MO never mentioned this to me....SMH.

If the CDC considers being on Tamoxifen to be immunosuppressive, that seems like something our teams should be informing us of.

I posted quite a few other studies that link Tamoxifen to various affects to the immune system, if anyone would like to read them they are here. https://community.breastcancer.org/forum/78/topics/868242?page=2#idx_56

https://wwwnc.cdc.gov/travel/yellowbook/2018/advising-travelers-with-specific-needs/immunocompromised-travelers#table802

"The period of time clinicians should wait after discontinuation of immunosuppressive therapies before administering a live vaccine is not consistent across all live vaccines. For cancer chemotherapy, radiation therapy, and highly immunosuppressive medications (exclusive of lymphocyte-depleting agents and organ transplant rejection prophylaxis), the waiting period is 3 months. For lymphocyte-depleting (alemtuzumab and rituximab) agents, the waiting period is ≥6 months, although many experts believe the waiting period should be ≥1 year. For steroid regimens considered immunosuppressive (see above), wait 1 month. Zoster vaccine is exceptional and may be given 1 month after any highly immunosuppressive agent, although many experts advocate waiting ≥1 year for anti– B cell antibodies and other lymphocyte-depleting agents. For agents not considered highly immunosuppressive (see Table 8-02), consultation with the prescribing clinician (and possibly a hospital pharmacist) is recommended to manage individual patients and estimate degree of immunosuppression. No basis exists for interpreting laboratory studies of immune parameters to evaluate vaccine safety or efficacy. Restarting immunosuppression after live vaccination has not been studied, but some experts would recommend waiting at least 1 month."

Excellent post, Spoonie!

Runor -- Thank you!

PrincessButtercup -- I'm not sure about live vaccinations. I haven't been able to get a vaccine for years due to my immune system stats. ETA, I did Goggle live vaccines and apparently there are still quite a few, including the nasal flu vaccine.

CDC https://www.cdc.gov/vaccines/pubs/pinkbook/downloads/prinvac.pdf

"Currently available live attenuated viral vaccines are measles, mumps, rubella, vaccinia, varicella, zoster/Shingles (which contains the same virus as varicella vaccine but in much higher amount), yellow fever, rotavirus, and influenza (intranasal). Oral polio vaccine is a live viral vaccine but is no longer available in the United States. Live attenuated bacterial vaccines are bacille Calmette-Guérin (BCG—not currently available in the US) and oral typhoid vaccine."

I mainly added that post from the CDC in order to demonstrate that if the CDC has posted it that should be an additional big flag to patients that there is indeed a significant factor seen on our immune systems (even if we do not feel it or see it thru symptoms) with Tamoxifen.

And I totally agree, that others like ScrafGal and for yourself, had sound reasons to be less concerned over Tamoxifen.

Everyone is so very different, coming into the cancer dx and afterwards, not to mention genetics and other factors. Chemo wasn't an option for me, so Tamoxifen was supposed to be my treatment course. My QOL was poor coming into this new "world". Maybe others have great QOL and haven't dealt with years of chronic, life disabling issues. That's wonderful and I'm grateful that others have that experience.

I just wanted others to have the chance to be informed, since it seems drs don't bring this factor up to their patients, and IMHO that's not a fair presentation, especially to those that have multiple health issues on board.

ScrafGal -- Tamoxifen is an IMMUNE MODULATOR (aka an immune system suppressant variant) demonstrated in multiple studies since the 1990 to lower lab values such as CD4, CD57 (natural killer cells), Auto-Antibody productions (ANA, RF, etc), B-Lymphocytes,TNF-alpha, TGF-beta, and more. These labs are not run on a typical CBC or blood count, to my knowledge. They are very specific labs to measure the activity of an immune system. I understand that you have RA and are on meds for that, so am I as I have Sero-Neg RA, but even so, my Rheum dr doesn't run these tests (that are lowered by Tamoxifen) when he runs my labs. He only ran the RF ANA and such when I was dxed and every so often afterwards. Maybe this is different for you. I'm very glad you don't feel any SEs due to the immune aspect of Tamoxifen. That's good news.

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Below are screenshots from my thread, and the other studies/info that demonstrate the effect Tamoxifen has on the immune system.

There's also whole book on it....

Tamoxifen: Beyond The AntiEstrogen

I won't paste all the tables of info that are in this book, but if immunity and immune response due to your medical history is of any major daily concern, then I would bring this up to your ONCO team for a discussion.