Am I the only one with a recurrence/regional spread?
Feeling alone and scared. Many more folks seem to jump straight to stage 4. Has anyone experienced this middling stage? Any advice?
V
Comments
-
HVV, you are NOT alone. I had stage IIIB IDC in my left breast, did everything "right", aggressive chemo, Bilateral mastectomy, radiation and tamoxifen for 5 years. 2 DAYS short of my 5 years clean, my onc found lumps under my arm on the RIGHT side. He was convinced I was stage IV and that it was probably in my bones, so he ordered a PET scan and told me to be prepared. He also said that if it was stage IV, they would probably just treat it with the other hormone pill, and do the Lupron injections to kill my ovaries. Amazingly, the cancer was ONLY in the lymph nodes (4) that he found. So, change of treatment...surgery first to remove the nodes (and I insisted my ovaries be taken out as well) and implant the port, because this was a stage II, so I would be receiving chemo again...Never so happy to hear THOSE words! My onc was amazed, and contacted fellow docs in Boston and Cal. to try to figure out how this could be. I had to go for genetic testing, etc. He thinks there were probably some minute cells from the first CA that were in the right breast and had spread to nodes. I think there are probably many of us here. What was frightening to me was that even though I had treated it so aggressively the first time, it came back. I got a real wake-up call!
-
Thank you Irish Dream. We are very nearly identical except my new nodes include supraclavicular nodes which are the step before mets some think so 3c for me (I beleive - no one has said yet). I have felt alone. Given your list of treatments: you are doing this time what i did last tiem and I am now doign what you did last time (ACT; mx, etc)
Thanks. I felt all alone. I hoep that you are feelign better. Are you done with active treatment?
V
-
Hi Ladies -
I also have had a similar dx with the tumor on the opposite side from the original cancer. I had a left side mastectomy on 2001, a recurrence on the left side in 2010, then the lump on the right side. I had 9 rounds of Taxol, surgery to remove the tumor, then rads for 5 weeks, then Tamoxifen.. My ocologist said my cancer was stage IV. My surgeon also called back east to a friend at some big hospital to discuss my case because this is not usual. I had a PET and no spread other than lymph nodes. This was all almost one year ago.
-
No advice, just my experience. I too felt alone and kind of pissed off about the cancer returning in the lymph nodes, after a sentinel node being negative. I was dx 2006, bilat mast with imm recon. FECx6 ( treated aggressively at the time). In 2009 I felt a lump in the armpit and there were 9/23 +ve. I had an axillary dissection, taxotere for 6 rounds, then radiation.
In 2011 dx with bone mets. At present no further spread. Grateful for that..... Get results on Monday from recent bone scan and CT.
One step at a time. I came here to lurk, post more now. Also did some yoga, art therapy and I see a social worker. Come here to vent, there is great support.
You are not alone...
-
No advice, just my experience. I too felt alone and kind of pissed off about the cancer returning in the lymph nodes, after a sentinel node being negative. I was dx 2006, bilat mast with imm recon. FECx6 ( treated aggressively at the time). In 2009 I felt a lump in the armpit and there were 9/23 +ve. I had an axillary dissection, taxotere for 6 rounds, then radiation.
In 2011 dx with bone mets. At present no further spread. Grateful for that..... Get results on Monday from recent bone scan and CT.
One step at a time. I came here to lurk, post more now. Also did some yoga, art therapy and I see a social worker. Come here to vent, there is great support.
You are not alone...
-
I am waiting for scan results too. My first six month scan after treatment. Hopefully, I will hear Monday.
-
I am on my second recurrence within 5 years of my initial diagnosis. I never thought this would come back on the first recurrence let alone again for a second time. Chemo, radiation, surgery and tamoxifen, none of these can seem to stop this. Wishing you all the best results possible with no spreading and most importantly no more recurrences.
-
Thank you ALL for reaching out. I am thinking of those of you who are getting results yesterday and today and sendingnpositive thoughts. Ruth, you have been on my mind for sometime. I amd sending positive thoughts and love your way.
xoxo
V
-
Yep, I got a shocker too when I was diagnosed w/recurrence about a month ago. It had been 6 years since my mastectomy followed by 6 months chemo. PR + . I had celebrated getting past the 5 year mark w/ the all clear. Now getting daily radiation and back on Tamoxifen. My Onc will not tell me that I am Stage IV even though I have a pretty big sub-clavicular node which was biopsy positive and a 1cm area on my left lung that may be spread too. He said they did not want to lung biopsy ( not sure why) I know that area may be too difficult to surgically get too. My CEA and CA 15-3 were normal and Onc told me they are not reliable markers. Did they run them on you too. Mine chose not to do PET scan but did a bone scan, chest CT and abd CT. ( bone and abd organs clean ) I feel so bad when I see a young mother getting rads as she has no hair (post chemo) still. Today had to bring along her 3 kids- how tough she is being poor thing.
Rene
-
Rene, I'm so sorry. Hang in there. Many many women live long lives even with late stage bc. I am pulling for all of us. V
-
babyruth any radiation after these recurrences?
-
netty46-I had radiation in 2009 after my first diagnosis. I think I had about 36 treatments at the time. I do not remember exactly. I also just completed a specialized form of radiation to my lymph nodes called cyber knife radiation. Although the procedure took a lot longer, I only had to have 5 treatments. I just finished that a few weeks ago.
-
BabyRuth - Which lymph nodes got the cyber knife?
My subclavicular node is wrapped right along the major vein under the collar bone so removing surgically out of the question. Routine external Rads all that was offered. Today #13 out of 28.
Not to many SE so far except fatigue. No energy for anything.Can't wait to be done. Hugs to you. -
I was immediate Stage 4 with liver mets 11 years ago. Gemzar with Herceptin put me into remission, which stayed for 6 years.
2 years ago, I had a recurrence in the lymph nodes behind my sternum,and into my supraclavicular node. I tried Aromacin, then Faslodex butt shots, and finally 4 months ago, I got back on Gemzar.
Just had a PET scan which showed an 80% reduction after 4 months!!!
I am currently on Herceptin, Faslodex and Gemzar, and will have another PET in Feb. I am very happy with my ol' pal Gemzar. -
Denny123- Incredible perseverance I must say - sure gives me encouragement to keep trying. Your HER pos adds another dimention for you. I have now finished RADS a couple of weeks ago and supposed to start that Faslodex shots as I failed w/all the pills. Another scan in 3 months too. Not sure if I will head the Gemzar way or not as mine is Estrogen fed. I told him I wanted a few weeks to recoup mentally and physically before proceeding. Finally letting the grey hair come in and quit coloring as it was too painful lifting my right arm, its so funny how I know . Look much more like my son who prematurely went grey in his twenties...ha
-
Hi, I was diagnosed with stage one breast cancer in 2010. No node involvement, ER positive, Prog. Negative. The lump was small 1.9 cm. margins were clear. I had radiation, and was 61 at the time, no chemo was recommended. It's 3 1/2 years later and I started having back pain. I thought it was arthritis , and had an MRI done. They saw two small lumps on my spine. They are pressing on nerves so I'm having a lot of pain. I am set to do a Pet scan this week, but I am certain it is a recurrence. I am so scared as I do not want to leave my family. I feel lucky when I read how many young women have died from this disease, and feel like at least I have made it to 65. It's odd because my mother had the same thing, but lived 26 years and died of something else. I'm shocked that stage one could do this. Feeling kind of hopeless at this point! -
lukesnana06, I'm sorry about what you are going through. It must be a huge shock.
I hope you can get treatment which quickly resolves your pain and the lumps.
-
lukesnana, if MRI showed two lumps pressing on nerves, this may well be bulging discs.something very common. Are you sure they are lumps or spots. See what the impression of radiologist reads at the bottom of report.. Spots would be more suspicious. Spots do not press on nerves Unless there is a grown tumor in the spine pressing.hope it is herniated or bulging disc. They do press on nerves and cause lots back pain -
lovetodance - I'm not trying to be negative, but if lukesnana had bulging disks, the doctor would've told her so and there would be no need for a PET scan. I was complaining of back pain a few months ago and they found bulging lumbar disks on an MRI so no further imaging was ordered. Of course there are other benign causes of back pain that can look suspicious on MRI so it's great that they are doing a PET to get more information. Lukesnana - I hope it ends up being something minor and easily treatable. -
lukesnana06 - Thinking maybe by now you had your PET scan or maybe this week. Am praying your report is negative but as someone else said if they already doing a PET then perhaps determining size is what they are going to look at. I am now 66 and was 58 at diagnosis. 1.9cm is not exactly small though ( same size as mine) I have had only CTs and MO claims that PET will only show problems when they become larger? . Mine has returned despite chemo and hormone blockers. Completed RADS late Sept. Its a bit ironic as my mother passed away from a heart attack at 68 so I had always been concerned about my BP and heart. I had lots of back pain and still do even though the spine CT was negative . My lungs pos despite no symptoms so go figure. I had so many side effects that I quit the Tamoxifen. As we all know what works for some does not for others. Just live life as much as you can for as long as you can ( my motto anyway) I sure hope your pain gets under control real soon. Hugs coming over to you right now and all you other lovely ladies dealing w/this crappy thing too.
-
After left mastectomy 12/18/12.... started Tamoxifen in03/13.. headaches were unbearable so MRI showed large tumor on pituitary gland..Removed on May 21 2013. Tried Tamoxifen again but the side effects were horrible headaches never got any better so onc took me off of it again by 08/13. Due to such stress and painful headaches I lost my by Plus-HD-1.6" id="_GPLITA_25" style="background: none !important; margin: 0px !important; padding: 0px !important; border: currentColor !important; border-image: none !important; width: auto !important; height: auto !important; text-decoration: underline !important; vertical-align: baseline !important; float: none !important; display: inline !important; min-height: 0px !important; min-width: 0px !important;" href="#" in_rurl="http://i.txtsrving.info/click?v=VVM6NDA4NzI6MTQzMTptYW5hZ2VtZW50IGpvYjphZDgxYmE0OWM0MzA4ZjNkYWQyMjBiYmE4NmVhZjBhNTp6LTEwOTQtMzUwMDA5OmNvbW11bml0eS5icmVhc3RjYW5jZXIub3JnOjUwODQyOmZiNmU1OTUwNjI3YzliNmY1ZjY1YjFhMzZmNmRlY2YyOmVlYjI2MGQ3NWM0MDQ0NDU5ODFiYjM4MzVmYThmYzcw">management job
of 8 years along with primary insurance. very depressing right? It gets worse. I am not sure if anyone else has ever experienced this or if it was just me but upon returning home from parents house ab 300 miles away I started to feel pain at the end of mast scar. I noticed a lump there and it was hurting pretty bad for the 5 hour drive I noticed that the painful lump started to move across my chest within 8 hours it had moved to the left side of my right breast. I had already scheduled an appointment with onc weeks earlier so I knew I could count on him to help me when I went in the next day I was also scheduled for a follow-up with surgeon the following day. I told both drs. about the painful lump on 09/11/13(onc) and 09/12/13 (surgeon). I requested a mammogram from both doctors but was dismissed and told that there was nothing to worry about and that insurance would not cover a mamm until a year after surgery. I was very concerned that they did not take me seriously. The surgeon scheduled my mamm for 12/02/13 so I waited (stupidly) After the mamm I was told that I needed an ultrasound. This did not surprise me at all I can still feel the lump. I saw my onc on 12/10/13. I asked him why he did not listen to me when I told him about the lump 3 months earlier. His exact response was "I don't get paid to listen to you". I was in shock!! I am definitely changing doctors but in the meantime I had to have a biopsy on 12/18/13 (exactly a year after mast at the same hospital). I asked my surgeon to please tell me the results over the phone as I have been waiting over 3 months to find out. He said that it is breast cancer and I will find out more details on Monday. I said all of this for 2 reasons,,, has anyone else ever felt a tumor move from mastectomy scar to other breast? and 2nd PLEASE PLEASE PLEASE don't do what I did and be ignored... we know our bodies and should never be dismissed this way. If you feel you have an important health issue and your doctor doesn't,pleaseget anotheropinion. I could already be in treatment or even done with treatment if my doctors had paid attention to my concerns when I presented them. I am not seeing either of those doctors after I get my pathology report tomorrow. I have called cancer treatment center in Tulsa and the staff I spoke with there gives me some hope that I will get the medical care I need. Prayers and best wishes to all survivors their families and friends. Also on a side note... could the drs failure to diagnose earlier be considered negligent? Just curious if anyone knows. I would love to keep another person from having to suffer in this manner.
-
thank you all for your support ... Of me and each other.
One day at a time seems to work best for me,
V
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