I'm confused with treatment plans and surgery....HELP!!
I'm going to the surgeon on Monday, I had surgery already on the lump and one lymph node removed. The cancer is in the lymph node and they want to schedule surgery for the full lymph node removal and both my surgeon and oncologist discussed this and they both think I should have the full removal. But my question to this is I only had the one lymph node removed and yes there was cancer but after reading about the TRAIL STUDY done in 2011 called Z11 on lymph node removal that states when 1-3 are cancer positive that full removal is not necessary as long as Radiation Therapy is done after surgery. Can anyone help me with this decision I'm confused and my oncologist said if anymore lymph nodes are found after surgery that CHEMO, the full monty would be prescribed. I'm confused with all of this should I get the full removal or not and just do the Radation and Hormonal Therapy or do the full removal of lymph nodes and do the FULL MONTY. And on the ONCO Test and I fell at 19% this did nothing really for me as far as what my treatment plan would because it put me in the middle but a the lower end. I'm so scared of the lymphadema and possible problems for life and the side effects of the CHEMO can be for life as well. But I don't want to deal with the CANCER later on and just be delaying the treatment and maybe causing more problems in the future!?! HELP!!
Comments
-
Hi Cin- I just came across your post, and I don't have an answer (plus I'm foggy from chemo)....but one thing I will be doing in this process is meeting with a radiation oncologist (different than my chemo oncologist). Is this something that you can do to help guide you? Why are there so many of us doing this....you're 2 years younger than me it looks like. My best to you....
-
Cinnamon68, so sorry that your doctors are confusing you and not fully explaining their reasoning behind their treatment recommendations. One thing that you can do to help the folks here respond more thoroughly and accurately is to update your settings regarding what type of Breast cancer you have and the hormonal status, treatments, etc. and making it public so that we can see it at the bottom of every post.
A lot goes into making treatment recommendations including size of tumor, grade, hormone status, lymph node involvement, age, etc. There is no big rush to do anything right away, take the time to get a second opinion. Does the hospital that you are being treated at have a specialized Breast center? I found that having docs who specialize in Breast cancer to be very comforting, and efficient
-
I would suggest meeting with a radiation oncologist prior to your surgery.
(Surgical oncologist takes care of the surgery to remove the cancer with either a lumpectomy or mastectomy, medical oncologist handles chemo and Tamoxifen, radiation oncologist handles radiation.)
The radiation oncologist can answer all your questions about radiation and your lymph nodes. I had a lumpectomy and SNB, the SNB determined that there was no cancer in the lymph nodes, however when I had my radiation, they did radiation to the whole breast as well as under my arm. My radiation oncologist explained to me that radiation was given under my arm just in case some cells made it to my lymph nodes and weren't caught for whatever reason. It was a safety net, so to speak.
Anyway, the radiation oncologist would be the one to talk to about this.
-
Yes, my surgeon her specialty is breast and melanoma cancer she does hundreds a year surgery that is on the breasts. And my chemical oncologist the one prescribing CHEMO and Hormonal Therapy well both have discussed the lymph node and they both want me to have the full removal of lymph nodes -ALN.
So I'm just confused with this study the Z11 done in 2011 can anyone tell me the chances of the lymph nodes having more cancer if they are higher compared to not having anymore cancer invading the lymph nodes when one is found to have cancer?
I don't want to take a chance and don't get the right treatment plan but the treatment plans can be so scary and a bit much. It just seems like things have to get worse before they get better in order to KILL this EVIL WEED THAT WON'T STOP GROWING UNLESS YOU CUT IT OUT AND DOUSE IT WITH CHEMICALS!!
I suffer with depression and anxiety and OCD and I was in the hospital 2x prior to being diagnosed and now this. This has truly been the worse year of my life. I cry a lot and I'm angry and I want to go back in time and make all this GO AWAY and get a do over!!
I'm usually an up beat fun person, I'm a LEO, I'm the party starter and I love to dance and have fun, love music, people and children are drawn to me, I always get them dancing!. And animals we go to ZOOS, I've been to 19 different zoos in the USA our goal is to go to all the ZOOS in the USA. And we've gone to a lot of State Fairs we've been to IOWA STATE FAIR, WISCONSIN STATE FAIR this one we go to every year, MINNESOTA STATE FAIR this one we've gone to 2 years in a row and wanted to go to it this year but not sure about this year, OHIO STATE and Milwaukee Summerfest we go to every year. But this year we haven't done as much as we usually would because of all of this and I'm just not into it. My relationship has gone through a lot this year it's been very hard on my man, I'm surprised he still wants me in his life. We've been together for 13 years, not married but we are in my eyes. But with the hospital stays 2x for my mental problems and my body beating me up the RA/Lupus that has taken its toll at times and now CANCER it's been a rough road lately.
I was diagnosed with Rheumatoid Arthritis/Lupus and Ulcerative Colitis and other auto immune diseases that come in and out of my life. And I've had RA/ Lupus since I was 13 yr old and we think that I most likely got it through a viral infection when I was around 8 or 9 years old. So pain has been a part of my life and that's mental as well a physical and I not sure if my small body will tolerate the chemicals they want to pour into my chest. I've been on METHOTREXATE and I had to have it adjusted due to having severe reactions to it being to high of a dose. I'm more scared of the treatment plans then the surgery!!! I'm so scared and sad.
Most who know me aren't used to seeing me like this and its almost like they expect me to snap out of it and make myself be happy and positive or else it will kill me they say. Most don't know what to do to help......but they say, stay positive, eat healthy, find something to make yourself happy and this is all nice and most likely right but not always as easy to do at times.
-
Sorry you have found yourself here Cinnamon68. Sorry too that you are feeling stressed by well meaning family/friends. You have to make yourself a priority at the moment. You don't need to validate your thoughts, fears and feelings. It's ok to grieve the losses and changes that a cancer diagnosis brings to our lives. Be kind to yourself. Hugs.
On the subject of axillary node clearance. My surgeon is not in favour of it at all. He considers it "old school" thinking.
He said in the past it was standard practice but now he feels it just creates problems. He said most often the vast majority of cleared nodes came back negative and in some cases women were left with terrible problems with lymphodema. He said every day he feels more confident that the best practice is to monitor closely. In all of his patients he has treated this way in the past, only 2 have required further surgery for more cancerous nodes and their outcomes were no different to those women who didn't need further surgery.
-
I had 1 lymph node with micromets and saw 2 radiation oncologist they both recommended radiation rather than ALND. Did your node have extranodal extension? If so I can see why they want ALND and even after that you may still get radiation on top.
-
Hi inks,
Thank you so much for your feed back and smurfette26 that goes for you to it really helps!!
I'm not sure what etranodal extension is , can you elaborate on this but what I can tell you is more info on my journey
The Oncotype DX came back with a 19 and it said 12% Tam alone and 12% Tam + Chemo that's with 1-3 positive nodes with a 5 Year Risk of a Recurrence or Mortality. Advice needed : Should I get all the lymph nodes removed or should I get no lymph nodes removed and get Radiation Therapy and Hormone Therapy.
I have so many questions due to this TRIAL STUDY Z11 done in 2011 did anyone make a decision due to this study?
And with the one lymph node taken out the tumor deposit measured 7.0 mm in greatest dimension.
My ER score was 9.9 positive and my PR score was 6.9 positive and my HER2 score was 8.4 negative.
And my tumor I have the wrong size on my tumor it was very small it was 0.8 x 0.5 x 0.5 it also states- invasive ductal carcinoma - grade II (of grade III) not sure what this means.
Lots of love and laughs always, thank you so much for listening, sorry for all this stuff.
Hug's for everyone!! -
Also my PET/CT Scan came back great and the genetic testing was great just one gene unfamiliar in the COLON area and the rest was all good no mutations for BRAC 1or BRAC 2 and your see the ONCOtype DX test above. So should I get the surgery if so they may want to operate as soon a this Friday Sept 2 2016 or Sept 12 2016. This is so much to deal with making the right decision is really hard but after discussing this with the doctors more I guess I will have to make a final decision soon. HELP!!
-
Congrats on the scan and genetic testing results Cinnamon68.
Good too that your tumour was small and ER+/PR+ & HER2-.
Extracapsular Expansion is cancer that has spread outside the wall of the node. Does your surgical pathology report mention extracapsular spread? Or percentage of tumour in lymph node? (Mine was 30% with no extracapsular spread)
There are no easy decisions. You have to go with what feels right for you. Wishing you clarity. Hugs.
-
Cinnamon, we have basically the same diagnosis except my Oncotype was 23. They removed 3 sentinel nodes during lumpectomy, not sure why they only removed one of yours. Lymphedema is a terrible thing, once you get it, there is no cure. If you can avoid having too many lymph nodes removed, that is usually recommended. I would ask your docs about that, and get a scone opinion. I did have chemo, but I was on the border line, my relatively young age at diagnosis (48) plus positive node and intermediate oncotype combined caused my docs to recommend chemo. I suppose if any one of those factors had not been true, I wouldn't have had chemo.
If you are not comfortable with your docs recommendations, definitely get a second opinion.
-
Extranodal extemsion is when cancer cells are bursting out of the lymph node. Did they discuss your case in front of the tumor board. They discussed mine and only one doctor wanted the full ALND. And what's the rush with the surgery, that is odd, a friend of mine had one node with extranodal extension and they did her ALND after her chemo. There is no rush, take your time to make your decision and go get a second opinion at another hospital. They need to give you time to get another opinion, good doctors support and encourage second opinions. Don't let them force you into this until you have done your homework and are happy with the decision.
-
Hi Cinnamon68:
Be sure to obtain copies of the pathology reports from all your biopsies and surgeries.
I posted some information about the second opinion process for several members in another thread that you are on here:
https://community.breastcancer.org/forum/5/topics/847444?page=1#idx_18
The recommendation you received is case-specific, and is based on the clinical findings regarding evidence of lymph node involvement (if any), your imaging, pathology findings from surgery and sentinel node biopsy, and planned post-surgical treatments. The indications for further axillary surgery (removal of additional Level I or II nodes) upon the finding of a positive sentinel node may not necessarily be the same depending on various factors. For example, in patients who are appropriate candidates for sentinel node biopsy in the first instance (clinically node-negative), NCCN guidelines for breast cancer (Version 2.2016) do not in general recommend further axillary surgery if ALL of the following criteria are met:
T1 or T2 size tumor1 or 2 positive sentinel lymph nodesBreast-conserving therapy ("lumpectomy")Whole-breast Radiation Therapy (at least) to be received; ANDNo preoperative ("neo-adjuvant") chemotherapyAmong some of the additional considerations mentioned is whether the advice regarding chemotherapy and/or recommended fields of radiation are likely to be affected by the results of a possible ALND or not.
Guidelines address the typical case, can be quite general in some areas, and are snap-shots in time. They do not address all possible situations. It may be clinically appropriate to depart from what they generally provide, in view of a person's clinical, imaging, and/or pathology findings, risk profile, or other relevant considerations. But this is hard for a patient to judge. If there may be more than one suitable approach (e.g., ALND, axillary radiation) and/or the choice may entail exercise of some medical judgment, reasonable expert minds may differ regarding the best approach. Such situations are prime for a second opinion.
If you do not understand the basis for the recommended axillary lymph node dissection ("ALND"), do not hesitate to contact your surgeon again for clarification. You may wish to request an explanation of (a) the purpose of ALND; (b) the possible outcomes, estimated likelihood of each, and their implications; and (c) a list of all of the factors which he feels support his recommendation for ALND in your case, with reference to your specific clinical, imaging, and pathology findings. Take notes. Ask the surgeon and radiation oncologist if there are other potentially suitable options (e.g., axillary radiation) instead of ALND, and ask about the quality of clinical evidence supporting any such options in patients like you. Request an explanation of the risks and benefits associated with each suitable option, including risk of lymphedema associated with each. This will permit you to probe or verify this view in your second opinion.
Regarding your question about Z00011 (with no less than four full-length publications from this trial): There are numerous clinical trial publications from a variety of trials that are relevant to the question of further axillary surgery in various patient groups (e.g., ACOSOG Z0011; NSABP B-32, AMAROS and others). They may not all apply to your specific situation, depending on the study population and treatments they received, versus your pathology and planned treatments. For example, some may differ by extent of lymph node involvement, surgical treatments received (lumpectomy and/or mastectomy), type of radiation therapy, and/or receipt of systemic chemotherapy. If a patient does not fit the criteria of a trial or will not receive the same systemic adjuvant treatments that patients may have received (e.g., chemotherapy), the findings may not apply to you in the way you might think. Don't hesitate to ask how ACOSOG Z0011, AMAROS or other trials factor into their advice to you.
Unfortunately, as laypersons, we may miss important distinctions or caveats that a clinician would appreciate, and we may not be aware of all relevant publications from one study or from additional studies, which might alter understanding. Because of this, neither clinical guidelines, general articles, nor selected scientific articles can reliably be used by patients as the sole basis for making treatment decisions, but should be used to inform your discussions with your doctors.
Often, there are risks and unknowns associated with all suitable options. However, such inquiries should help you decide what is best for you, and to make a more informed decision, in light of your personal risk tolerance.
I am a layperson with no medical training, so be sure to confirm any information above with your team to ensure receipt of accurate, current, case-specific expert professional advice.
Best,
BarredOwl
-
Thank you so much everyone for your feed back, I went to my surgeon yesterday morning and I asked my surgeon about getting the full lymph nodes removed after only having one lymph node removed and why wasn't more taken out, she said only one lit up which means I only had one sentinel lymph node some people have 2 some have 3 and some have 6 but she stated that isn't the norm.......6 that is. And that having 6 would be more like getting into doing a full lymph removal then.
My lymph node measured 7mm which was a little bit bigger than the lump they took out and she said if the lymph node would have measured 2mm or less that she would have been thrilled and I wouldn't have to have all the lymph nodes taken out but due to the size being 7mm.......she said that all the lymph nodes need to come out.
My surgeon is out of IL. her name is Dr. Sonya Sharpless and I run into people all the time who are Survivors who say nothing but great things about her and that I am in good hands that her beside manor is wonderful and she also follows strict protocols as well. She went to school in Canada and with her views and outlook she's definitely not tainted by our Medical Industry. She follows all protocols and she does hundreds of Breasts Surgeries every year. She is also very familiar with the STUDY Z11 that was done in 2011 and she follows protocol when it comes to this.
I don't want this disease and who the HELL does but all I can do is FIGHT no matter what, even though I want to cry and let me tell you I have and I am angry and mad and just sad not all the time but a lot lately.
I deal with other health issues I have Rheumatoid Arthritis, Ulcerative Colitis and other Autoimmune Diseases. My surgeon said due to my Autoimmune Diseases that this is mostly how the Cancer came to be and it sure didn't help, she said I will have to watch over for life now due to all this. She also stated that I was the 3rd person she has seen in a week with RA and Cancer now and that when Autoimmune Disease are present that Cancer is a higher risk.
God bless you all and thank for listening,
Lots of Love and Laughs Always...........HUGS TOO!!
BarredOwl, Thank You Soooooooo, much for your input!!
You are very informative we need more like YOU in the world!! And to help others is the greatest feeling one could truly receive!!
-
Hi Cinnamom68:
I wanted to emphasize that the information in my last post was only general information. I have no way of knowing whether the advice you received is appropriate to your specific case, because I am a layperson.
Also, I am not sure if you are slated to receive a form of "whole-breast" irradiation or not.
Has it now been decided that you will be receiving chemotherapy for sure, currently planned to be Cytoxan-Taxotere, but subject to modification depending on the result of ALND?
Did you happen to discuss the AMAROS trial with your doctor? In light of the results of that trial, suitably selected patients may receive axillary radiation instead of ALND:
AMAROS Trial: http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(14)70460-7/abstract
If you didn't get a chance to discuss this trial and the option of axillary radiation (instead of ALND), please ask about it. Be sure to ask why and what factors in your case she feels indicate that ALND would be preferred over axillary radiation. These two options may have different risk/benefit profiles as discussed in my earlier post, and if both were seen as reasonable choices, a patient may prefer one over the other, given full information about the risks and benefits of each.
Because reasonable medical minds may potentially differ as to the preferred option (ALND versus axillary radiation) in any specific case, a second opinion may be valuable, if you are up to seeking one.
Best,
BarredOwl
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