Tiny recurrence after mastectomy and radiation -- whats next?
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Mudstick - Thanks for asking. I'm doing well. I finally got my first set of injections yesterday. I had to wait for the pre-approval to come through. I got there early and got put in quarantine with a mask on. It took 40 minutes for them to decide if I was going to be let into an exam room because I had gone to Virginia (out of state) for my DGD's first birthday. We left on Thursday before the s*** hit the fan. The shots were fine. The nurse said she had taken the faslodex out of the refrigerator as soon as I checked in at the front desk. No side effects so far. I have an appointment in two weeks to see if I get more radiation and another shot. I doubt it as I have lung damage from the first time and a pulmonary embolism last year. Now I just need to survive being cooped up for the foreseeable future seeing nobody but my doctors and family. They're not going to let me do the grocery shopping. I start to go stir crazy after 3 days at home. Wish me luck.
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GraceB1 - Good Luck!!! Sorry for the late response. I hope you are hanging in there and not going too stir crazy (yet). Have you had your appointment to see whether you do more shots or radiation?
I'm feeling squirlly at home, trying to work while my school aged kids are here needing direction and home schooling!! I'm also struggling to work...my anxiety and all the uncertainty with covid and treatment plans are making concentrating very difficult to say the least. I'm not allowed to go grocery shopping either :-)
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Just to make my life more interesting I fell in a pot hole Sunday while ona walk and broke my arm. I couldn't get up and needed an ambulance to get to the hospital. I get a CT scan on Monday to make sure it's not displaced. Tues is the RO appointment and second set of shots. Wed is my annual physical or my primary physician won't refill my meds. So much for staying home during the quarantine. I hope life is going better for all of you.
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Hey someone mentioned a flashlight test. Can someone explain this? Because my new knot shows up as a dark spot. Also I have more than one area. I have a ultra sound in the morning do to new area that reconstruction doctor found. Wish me LUCK.
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Hello everyone, I'm new to the forum and I just wanted to say it's comforting to have read stories very similar to mine. Cancer can be such a lonely and scary place, I think it's so valuable to feel you are not alone! I was diagnosed in 2016 with IDC 3.5cm no node involvement PR+ ER+ HER2- I had a mastectomy with expander followed by 3 FEC, 1 taxatere and 8 pacitacel. In March I was diagnosed with a reoccurrence in the same place as before. It was <1cm and has been removed but a CT scan has showed multiple enlarged IMC nodes. I have had RT to include these nodes and I am now waiting for another CT scan to see if these nodes have changed. I am finding the diagnosis this time around very hard to deal with. Emotionally it has been so tough and even harder than first time. I have been very upset that my initial tumour was not treated with RT despite having DCIS within 0.2mm of the posterior margin. I remember querying it at the time but I was told I didn't need it! I naively just trusted that they knew what they were doing. I have done much more research this time around and I can't believe they didn't treat me with RT from the first diagnosis. I seem to fall into all the danger zones for reoccurrence, mastectomy has DCIS 0.2 mm from margin, tumour larger than 2cm, multi focal, dense small breasts, grade 3, pre menopausal ( age 47) family history( my poor mum has breast cancer twice) I feel that I might not be in the position I am in now if they had given me RT. This has caused me so much anxiety. I know you can't change the passed but my children might be left without a mother due to this poor decision and that thought has laid very heavily on my mind since my reoccurrence. My daughters are 12 and 15 and the lights of my life!
I am now waiting to find out if there is any spread to the IMC and I'm so frightened. My team are saying that chemo would not be of any benefit as the tumour is PR+ER+ They told me studies have shown that chemo is only beneficial in hormone negative tumours. I would be grateful for anyone's thoughts on this. I want to make sure I have no regrets this time. Thank you so much for listening to my story. Hugs and love to you x0 -
hello .
Looking for feedback...I had a unilateral mastectomy a little over 2 years ago. The last week or so I’ve been having weird muscle sensations and tightening of the muscles are at the mastectomy site. I do not feel any suspicious lumps, but this is a new sensation. Can this be normal after 2 years? I did not have reconstruction. thank you!!
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Sparkle, I am sorry you are facing a recurrence. It is tougher emotionally the second time, but you CAN do this. have you had further tests? Do you have a treatment plan in place???
Cccmc, I get cording which causes some pain and tightness. That,s a possibility. Do keep an eye on it though. If it worsens, let your docs know
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Hi Ladies, I was diagnosed with a small recurrence less than a year after chemo and BMX, it was only 5mm and my PET scan came back negative. I had surgery in June to remove the new lump. I am currently on Lupron shots monthly with arimidex pills daily and am completing 30 rounds of radiation. I didn't "qualify" for it last time because I had no lymph node involvement. What did they change for you after your recurrence? My doctor hasn't come up with a plan just yet, he wanted to consult with some other oncologists since there's no "protocol" for me
. I am also thinking of going to U of M or Karmanos for a second opinion. 0 -
Alden, I think it's definitely a good idea to get an opinion from a large, preferably NCI, cancer center if you can. They can possibly discuss your case at the tumor board too.
After my recurrence I was switched from aromatase inhibitors to Faslodex. I have actually found Faslodex to have fewer side effects and better quality of life overall. I was afraid of the monthly injection at first, but now that I am used to it, it's not bad. I also recently started Ibrance.
I hope your doctors can come up with a good plan soon. Best wishes to you!
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Alden - here is the link to the two NCI hospitals in Illinois.
https://www.cancer.gov/research/infrastructure/can...
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Hi All,
Bit of an old thread, I see, but wondering - did you have recurrences while still on Letrozole?
I’m almost 3 years out and had a weird feeling in my arm and shoulder starting a few weeks ago. I have a lot of spine and other trouble from old car accident and this time last year, just before the 1st shutdown, I had a frozen shoulder in the opposite side. Though, I don’t remember that having this sort of feeling beforehand.
I went to osteopath and various things but it wasn’t getting better. Then I noticed a small swelling on the inside of my elbow. Then I had a feel around (which, frankly, I don’t normally do because I can never tell what I’m feeling with dense breast and scar tissue and whatnot) and a bunch of lymph nodes on the sides of the surgery (partial mastectomy in May 2018) were all swollen. I went and got lymphatic drainage last week and that helped them but it all still feels weird...
I kinda go into a shell of anxiety and that’s where I am now...I hate not being one of those people that can just handle it and face it and be brave with a smile on my face..
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PalBuddy, it is possible to recur while on hormonal therapy. You don't need to be brave or to smile - you just need to make a phone call and see your dr. for an exam and possibly a mammogram and ultrasound to see what is happening in the tissue.
you didn't by any chance have a covid vaccine recently? Many are reporting lymph swelling as a result of the vaccine and it has nothing to do with cancer.
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PalBuddy - you have some great advice here from Moth. Make the call and get it checked out so you know what is going on, could very well be lots of things besides cancer
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Thank you. Made the phone call.Have appointment on Tuesday.
I hate being so frightened. It’s debilitating.
(No, haven’t gotten the COVID vaccine yet - but was wondering if that might overload some people lymph node wise.)
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Hi again. I hope you all are doing well, even if you're not checking this website anymore :) . I started this thread a few years ago when I had my recurrence. I think it's pretty telling that as soon as that dust settled, I disappeared from this site (couldn't even recover my old login). I'm pointing that out because people who are scared of diagnosis/recurrence/bad-news-in-general can get a very biased view from these sites since many times the people posting are the ones with the bad news. It does help so much to connect with others in similar situations, but if you're searching through the forums while waiting for results or appointments, just keep that in mind! Most people don't get bad news, even if it seems that way from these posts.
That said, I find myself playing the waiting game yet again :( . I found another teeny tiny nodule near my armpit on the cancer side, right under the skin on that ropy part where the pec muscle leads to the underarm. I showed it to my surgeon pretty quickly, and he gave me the choice of getting an ultrasound or just skipping straight to excisional biopsy. I chose the biopsy, so he's cutting it all out (size of rice grain again) on 1/4. Maybe it's scar tissue, a migrated surgical clip, any number of things, but it's hard not to be nervous. Has anyone had more than one local recurrence without progressing to distant recurrence? I'm getting ahead of myself, but I'm scared that if it's another IDC, however small, maybe it's a bad sign for the future :(
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Hi Kat! Dr. Liz O'Riordan has had two local recurrences, the second one just this year. No spread that they can find. So it happens.
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