Did taking supplements cause my recurrence?
I have been diagnosed with recurrent breast cancer in the breast I had removed and reconstructed. (10 years ago.) It is HR postive, PR negative, Her negative. (We survivers have our own language!) Right now, the plan is a few months of Femara, surgery to remove the reconstruction and surrounding involved tissue (its a large area and I will need skin grafts) and radiation. I might or might not need more endocrine therapy or chemo.
I have two questions which may seem silly:
1. I had taken SJW and 5-htp for several months. I think I noticed a thickening and then a rash about the time I started taking these. (Which is why I didn't go in right away to check out all these lumps and areas of thickness.) Could taking these supplements have contributed or aggravated the cancer?
2. A small area of activity=SUV 2.5--was seen on a node near the underarm of my GOOD breast as we were staging this one. My doctors both felt an enlargement and it hurt a little when they were poking around there. Cancerous nodes aren't suppose to hurt, are they? I myself can feel nothing. They both said it could be due to an infection. I am scheduled for an ultrasound guided needle biopsy. I am thinking I am going to show up to have that done, but the area will be gone as the infection cleared up. Do you think that will happen?
Thank you. I am new to this and I am going to browse. I am afraid I will be more of a learner than a sharer of knowledge.
Comments
-
What are SJW and 5-htp? Are they hormonal in any way?
-
NO! Nothing you did caused your recurrence. Cancer doesn't need help to come back, it does it all on its own. I have a personal gripe with all the lists of things that supposedly prevent a recurrence. There just isn't a lot of science to back them up, but they can sure leave women feeling guilty if they don't do everything, or thinking they are safe if the do. I think everyone with breast cancer has her pet theory for how she did it to herself -- we all do this. But it is bunk! You didn't do this!
-
I also believe a recurrence is simply bad luck or the nature of cancer, whichever way you choose to look at it. You have enough on yhour plate without looking for a way to blame yourself for your misfortune. I am so sorry that you are going through this.
Cancer can hurt...that is how I dscovered a problem that caused me to go get it checked out right away even though I had had a normal u/s and mammo 6 months prior to diagnosis....whether it was just super aggreessive or hadn't shown up on previous mammo/us tests is anyhone's guess...and it is a moot point now. I had several needle biopsies due to cysts over the years. This was just a soreness and no lump.
I started having some pain on the side of my breast, which then started turning a bit red.....at first I thought it was from underwire bras, so switched bras..but it didn't go away, so I set up an appointment for testing. I was devastated to find it was cancer. I had a mastectomy...and then even more bad news as the path report came back that I had lymph node invasion and a very aggressive cancer. I was at stage IIIC, borderline IV and grade 3. I had chemo and radiation and have been taking Arimidex for over 3 years now.
I'm not mentioning the pain to scare you, but to warn everyone that the myth that it isn't cancer if it hurts is not true. I certainly hope yours is from an inflammation. After my mastectomy a PET scan showed some local spread over the opposite (so called good) breast...but after chemo I was NED and have been NED since then. So don't be too scared if something shows up in that breast. I hope chemo will put you into remission and keep you there! It sounds like you are getting excellent care and staying on top of this and that is really all you can do.
Hugs,
Liz
-
Thank you! Your sharing has made me feel a lot better about my situation. Less guilt=feel better!
Liz, how are you doing now? What does NED mean? Doyou have to do a PET scan every year?
Thank you again!
-
arbojenn--ditto on member & liz's posts! I have nothing to add except:
NO GUILT! If we had that info NO ONE would have mets!
Sh*t happens!...then we get out our cans of whoopass.
We are here for you-----keep coming back. Be well & stay strong
-
Arbojenn...I am doing well now. NED means no evidence of disease. I was getting scanned every year (sometimes twice a year)...but haven't had one yet this year. I was diagnosed in April, 2005 and have been testing clean since the end of chemo and my tumor markers have been nice and low. My doctor had me keep my port in for two years after chemo "just in case". He is a very positive person, but I got the feeling he was surprised at my response to chemo. I know it could come back, but do my best to focus on the fact that I'm doing well now. I do have lymphedema, some side effects from the Arimidex and a few side effects here and there leftover from chemo and rads...but I'm alive and that is the most important thing. I still see my oncologist every four months as that is good for my comfort level.
All you can do is take care of yourself and pray. It's okay to get scared, ok to get down, ok to get angry....but not stay that way
Concentrate on enjoying yourself and your loved ones. Pamper yourself whenever you can. But whatever you do .... erase the word GUILT from your mind. None of this is your fault and you have no control over it.Some people try to find a reason to blame you so that they can feel it won't happen to them....they are so wrong. I don't think people mean to say stupid things, but they don't know what to say and it is easier for them if they can find a reason to blame the victim of a disease as it makes them less fearful.
Anytime you need to talk about anything, this board is great for help and you can always PM people if you do not want to post.
I don't visit this board very often now...but in my first year I would have been totally lost without it.
Liz
-
I had a hyster/ooph three weeks ago, BLM in November. I had a follow up visit with the onc/gyn who did the surgery and she was great. I was talking about getting back into shape and eating right, etc. She smiled and said "that is all great, but if for some reason your cancer comes back, I don't want you to think you did or didn't do something, Sometimes it just comes back, and I'm tired of the suggestion that women are doing things or not doing things and getting a recurrence. I want my ladies to have no guilt." I thought that was pretty cool. I've spent the last 6 months wondering what I did to get it, am I being punished, all that stuff. Now, I'm going to be healthy and happy and do the best I can to take care of myself, and hope for the best.
Karen
-
I find that more and more I don't post replies if they are contrary to other opinions that are stated strongly. But I don't think I can feel I have any integrity here if I don't give my opinion on this topic. While I agree wholeheartedly that several months of anything isn't likely to have caused a recurrence, I disagree that we don't have any control over this disease whatsoever and that there aren't things that might play into the possibility of a recurrence. I have read enough about the correlation between fat in the diet and breast cancer to think that it is prudent to limit the bad fats as much as possible. My oncologist at Dana Farber has done extensive research on exercise and the correlation between lower recurrences of breast cancer and believes that exercise is something that we can do to lower the chances of a recurrence. If estrogen was not potentially harmful to women with breast cancer who are estrogen positive, we wouldn't be told to stay away from soy and phytoestrogens! So I am someone who does believe that there are ways we can help to limit the odds of a recurrence, or stated conversely, I believe that there are things that we do that can exacerbate the situation.
I think the reason I responded more than anything had to do with the 5-htp. I had researched that about a year ago because I was thinking of taking a supplement with 5-htp in it and I found enough of a cautionary note in terms of breast cancer that I didn't go near it. I don't think several months of anything will have a profound effect, but I personally believe that over an extended period of time, there are things that could prove to be harmful. I read every ingredient in any supplement I take and then I research each ingredient to see if there is any potential tie to breast cancer. Believe me I have found things that have caused me to stay away from certain supplements!
arbojenn, you might want to take a look at the research on 5-hpt. If you don't find any problems with it, that's fine. But I couldn't have lived with myself if I didn't respond to this and let you know that I had found some articles that cautioned against the use of it.
Trisha
-
Karen, MTC and others,
I couldnt agree more that we need to refrain from berating ourselves about what we did, didnt do, ought to do or could have done...from what I have read, even the supposed risk factors and BRCA account for only about 20% of all breast cancers. So where does that leave the rest of us? There are vegetarians that get breast cancer, there are exercise freaks that get breast cancer, there are nonsmokers and teetotallers that get it, even some women who have kids in their early 20s get it. And there are obese women, chainsmoking women, who do HRT and eat all the "wrong" things and dont get it. Go figure. Some diseases, like heart disease and diabetes, are accounted for very neatly by a combination of genetics and lifestyle issues. But unfortunately for us, breast cancer seems to be different.
These kinds of discussions are old ones. As Susan Sontag points out in "Illness as Metaphor", in the 19th century there were a million and one theories about what caused TB. Lack of mountain air was one, but the biggest one was that "dissolute" lifestyles were responsible. I.e., the patient had caused his/her own illness by making the wrong choices about how to live his/her life. Then finally lo and behold, they found out it was a bacteria and the cure was antibiotics. Whether people led morally upright lives or not had nothing to do with it. All those theories went up in smoke. When Susan was writing that book in the mid 1970s, as she did chemo for her own BC, the biggest theory going around was tht cancer was caused by repressed anger.
Thirty years later, they have figured out what definitely causes certain lung and cervical cancers. But for most others, breast cancer among them, it´s still pretty mysterious. One of these days, hopefully in our lifetimes, they will figure it out...but for now we are pretty much groping in the dark, so why kick ourselves?
Lisa
-
Lisa--I really like what you wrote. When my mother had breast cancer in the mid 1980's I was seeing a therapist for panic attacks (I've had them off and on for years). He told me my mother got breast cancer because I moved away from her (in San Francisco), to Los Angeles. He was a highly sought after therapist, published, had books, radio, television. He said that breast cancer was caused when mother and child separated and the mother didn't deal with her feelings. Well, my oldest son is about to move from Portland to LA, I hope I do better than my mother she died, and that old piece of cr** he placed in my brain 25 years ago comes up. I agree that taking care of ourselves diet, exercise, lifestyle is important, but what I was trying to get across in my post is running one more mile, eating 10 more carrots, if you are doing those things already probably won't make a big difference. Becoming obsessive isn't a good thing either. People discuss the difference between quantity and quality of life, I'd like to find a balance between both, if I never eat a brownie again, or spend all of my free time working out (I already work out--not now after surgery, but before and will again--12-14 hours a week), then there is no quality of life, in my view.
The WINS study showed improved survival with a low fat diet, but other studies have not supported that. That is not to say eat butter until you can't swallow, but choose your fats, the Mediterranean style diet is a good general way to eat.
Chlebowksi JNCI 2006, 98: 1767-76
Karen
-
I STILL maintain ---all things in moderation! Balance is key!
We have to do what we believe is best for each of us even if it is motivated by obsession or denial! We are who we are & blaming ourselves for something we can NOT be responsible for will never be of help......Trust your gut & let go of the things that keep you from succeeding....like guilt!
Be well & stay strong
-
Trisha, this thing of not being able to live with yourself, I dunno. She took the supplement for several months, there is no way it caused her recurrence. I don't see how your post helps. And i truly believe that while it is generally a good thing to watch our weight and exercise and all for a lot of reasons, and I believe the research, I really rebel at the idea that we have that much control over this disease. I've just watched two thin and fit women die from bc. We are all doing our best and my guess is that guilt is worse for our health than having a cheeseburger. And, hell, if you really like cheese burgers (and I'm a vegetarian talking) than why deprive yourself? We fight to live so we can live.
-
"We fight to live so we can live".
Well said .... and simply stated. I definitely have to remember that one!
Liz
-
I had never heard of 5-htp, so I googled it and came up with this:
http://www.ncbi.nlm.nih.gov/pubmed/16164376
Its a study in the NCI database advocating the use of 5-htp in breast cancer patients. I am generally leery of supplements and I know one study is only one study, but this sure makes it sound like it isn't harmful.
-
Member, if I took the time to write and said I wouldn't be able to live with myself if I didn't, I don't see why you would doubt my word. I have a lot better things to do with my time than to come onto this forum and have to fight my way through people who decide that since I don't agree with their take that there must be something wrong with me or disingenuous about what I have posted. If you take the time to read my post again you will see that I said I DO NOT THINK SEVERAL MONTHS OF SUPPLEMENTS COULD HAVE DONE ANYTHING.
However, I also said that I did research on that stuff last year and found something that made me decide I shouldn't take it. It is arbojenn who mentioned taking the supplement. Since I had found some things that bothered me about it last year, I felt I owed it to ARBOJENN to tell her about it. I would want someone to do the same for me. If she is comfortable taking it after doing independent research, then that is on her. But I now feel better about myself for at least bringing it to her attention. Again, I would want another human being to do the same for me if she thought something I was doing could POTENTIALLY harm me IN THE FUTURE.
-
Hi Trisha, it sounds like there might be a bit of a misunderstanding. If you go back and read Arbojenn´s post, she used the past tense in describing her use of this supplement. So she has already stopped taking it.--Lisa
-
I should not have jumped on you, Trish, and I apologize. I was putting myself in Arbojean's place and thinking how i would react if it were me. I do think we should all be honest with each other, Lord knows, but I also think that if the science isn't clear (and I don't know about this supplement, but from googling it seemed like nothing blared danger, danger, and there was that one study suggesting it could help) and if someone isn't following a practice anymore (which Arbojean said) then posting that she might have actually done something to cause her recurrence seems to me to be something that will cause distress without helping. Yes I know you said that only a few months shouldn't have caused the recurrence but in the context of your post it sounds like, yeah maybe it did. This isn't like the connection between cigarette smoking and lung cancer. Beyond the BRCA mutation there really isn't anything out there with that kind of close, proven link to breast cancer. What we have are studies that show certain practices help around the margins. I am all for helping around the margins -- that may be precisely where I live. But given the weakness of any of these causal links i think we have to be very careful about creating the impression that any of us brought on our cancer.
I think if you really want to provide a service about 5-htp, rather than post a response to this post it would be helpful to start a whole new general thread somewhere else that actually provides the information. I'm actually interested, not because I am considering taking the thing but because I saw nothing indicating trouble when I googled it so I;m intrigued.
-
I think Trisha is right to point out that we should really watch it when it comes to supplements. She's trying to be helpful. Also not a good idea to be drinking a lot of soy milk or eating a lot of soy products. It can't hurt to be careful.
-
Member -
I looked at the link you provided and the article is a hypothesis, not the report of a controlled study.
-
Forgot to say, arbojenn, that I am truly sorry to hear about your recurrence. And of course, eveyone is right in saying you've done nothing to cause it - it takes many years for cancer to develop.
-
I know, I was looking for anything about this supplement and bc. I really am curious as to how something that affects serotonim can also affect breast cancer. And I agree that Trish's message about supplements is an important one. I guess my concern was the context.
-
Gosh, I have just decided to IGNORE everything that is suppose to cause BC. It is overwhelming and depressing as H*ll.
after being a member on this board for almost 5 years...
I have learned that ANYONE can get cancer. You can eat meat or not, you can take supplements or not, you can drink or not, you can smoke or not...the thing is THEY DON'T KNOW. There are SO many varieties of cancer..BC to say the least. What might work for one, might not for another.
I personally have given up the Witch Hunt to find out why I got cancer and now that I am stage IV does it really matter???
I want to LIVE my life, eat that dang cheese burger and have a glass of wine.
I WAS not overweight when I was diagnosed. I was fit and healthier than most people I know. IT is a frickin crap shoot.
I couldn't live with MYSELF, if I didn't post this.
SO, anyone who is reading this who has Mets, you did nothing wrong. NOTHING. What is important is to understand what we need to become knowledgeable about treatment and have HOPE.
I am sorry if this offended anyone who believes that stress, or bottled water, or some other factor caused their cancer. Every new report says that such and such is LINKED to BC... I say Bull Crap. I
t is your right to believe what you want. I respect that. I also respect that I have an opinion too.
I may have months, or years...but I am not going to spend them eating seaweed or trying to figure out why I got cancer.
I am going to live my life. One treatment at a time.
Janis
p.s.
Thank you Member, as always I LOVE your posts.
-
I agree with Fitztwins post. There are so many things linked to breast cancer. By things it ranges from supplements, soy, sugar, yeast, stress, plastics, etc. If you research all of them, you will find a different side of the story in each case. Soy and phytoestrogens are two that are highly debatable on extreme ends of the spectrum... one saying it causes b/c and the other that says it dramatically reduces b/c and reoccurance.
In the end, you did not cause your cancer and neither did your supplements. I research everything I take and my own decisions on what I take. Between scams and misinformation... it can be overwhelming.
My cancer was painful and it was the notion of b/c is not supposed to be painful that I had a false security. I had a lump and they did a mammo and an ultrasound and said it was nothing. For six months after I kept feeling this lump and it hurt. I went with it was probably a cyst.... my mom has lots of cysts in her breast that were very painful. Finally I could tell is was getting bigger and when I went back ... bam!!! B/C and stage IV with mets to liver, bones and nodes. You just don't know!!
I, too, am living my life and doing it all the best I can. I drink eat and drink what I want in moderation and loving life!
Jennifer
-
Jennifer, my story is very similar to yours. Painful lump, did a mammogram and u/s and told me it was nothing. I was diagnosed a year (!) later.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team