Calling on all triple negatives w/ local recurrence

Hello ladies,

I am on stage IV board i newly was diagnosed with a reoccurrent cancer with mets to the liver and bones. I see a lot of mixed message on this board and mixed messages about the meaning of reoccurrence. A reoccurrence when it happens and too close to original dx means that the first line treatment did not hold the cancer. And if a reoccurrence is local ( it is only confined to the breast) it will be treated the same way either  chemo or chemo/ surgery or radiation if the site was not radiated before.reoccurences can also be regional or distant , when it is regional usually it means chest wall or clavicule , it is in the region of the breast, however if it is in the lungs, liver or any vital organ, or bones it is distant. All triple negatives are only treated with chemo , it is the only effective treatment available for them. Just this week when i asked my oncologist about me if i have the possibility to go NED ( no evidence of disease) he told only triple negatives and IDC cancer if they respond to treatment can attain this. Mine was originally ILC. I have a slim chance of becoming NED but if they can hold the disease from progressing up to 90% they would call this a success. I am not on a treatment to cure i am on systematic treatment. Not palliative yet. The bottom line is if there are still some chemo you are offered new chemos try them and one of them may work for you. Each person 's cancer is different and it behaves differently so there is no telling. But most of all keep your hopes up and hand it all to god , he knows your need . Most of cancer treatment do only half the job the rest is faith and a lot of courage. Do not rely too much on the internet it may give some info but most of the researches date from a minimum of 20 years. However, a lot of new meds are being approved and are giving good results , longer survivals and to some it is a salvation.  I am not a triple negative yet i am still Er+  but it is not that far from triple. I hope i am not intruding on you all , i just thought i could share the knowledge i got from my cancer specially that all my oncology team is very cooperative , astute and very open with me about the disease. I hope this helped. I wish you all great ladies a good fight and a winning one. God bless u all.

Onefineday, I threw everything at it. I had rads after chemo and surgery. SE's were minimal.  Unfortunately, I had an almost immediate recurrence. I know that if I hadn't had rads, I would have beat myself up thinking "if only I had". I guess some cancers don't follow any trends or rules. But just knowing how aggressive tnbc is, I would want to know I did everything I possibly could. Perhaps if my stage or grade was lower, I would feel different.

phgraham, good luck on your  scan!

Unicorn,

They don't usually do PET scans to check for mets. CT of chest and abdomen is more sensitive. They normally do these before you have surgery and start chemo. 

Triple negative cancer tends to recur more BUT the recurrence rate (if you are early stage and respond to chemo ) is still less than 30 percent. Most women survive it and don't recur. (5 year period)

If you have mets you would eventually have symptoms. If you have a scan that catches the mets 2 months before symptoms start, it really doesn't change the outcome much.

I know it's hard. Just try taking it one day at a time. Don't worry about what hasn't happened yet. If it happens you will have plenty of time to worry. Enjoy each day and don't think too far ahead. Treatment is rough but completely doable. Enlist friends and family for support and find something that makes you laugh. 

DIAGNOSED MAR 2013

Stage 1 IDC Grade 3 TNBC 1.6 cm tumor BRCA1,2 negative

Masectomy Left side only, sentinel nodes removed , tram flap reconstruction. 

Four ..treatments Cytoxan and Taxotere every 3rd week, Neulasta shot after each treatment.

Broke out in hives on third treatment, so switched to 3 weekly treatments of Taxol only.

Third treatment of Taxol delayed couple weeks due to decreased WBC.

Am now going to see oncologist for second visit post treatments this week.

Have had one mammogram since treatment which was negative. But not so sure how trusting mammograms are, since my 2012 mammo was negative and 2013 was positive with close to 2cm tumor.

Onc does not recommend any scans or ultrasounds post treatment which I thought was worrisome since TNBC can reoccur so quickly other places. He said I would be getting unnecessary biopsies on false negatives.

Is this the normal recommendation?

Also have read about Circulating Tumor Cell testing that is being performed on simple blood test, but usually reserved for patients with metastasis . Why wait?

Any suggestions for questions I could ask my onc on my visit this week? Especially on post treatment evaluations.

Also my sister has just been diagnosed with TNBC. Our path reports look identical. Her treatment is the same, but no neulasta yet. She has not had gene testing.

THANKS FOR ANY SUGGESTIONS, NEW TO THIS BLOG, SO HOPEFULLY MAKES SOME SENSE!

15 years and now back.  I've been booked for a single mastectomy but beginning to think that I would prefer a double. Seeing the surgeon again on Friday - everything has been rushed from the beginning.  Local recurrence, Grade 3, TNBC - I'm not sure if it's stage 1 or 2 as I have been given measurements for both.  I was supposed to be tested for BRCA1 but I'm still waiting (UK) and I don't think my oncologist expected my chemo to fail and thought there was time. They suspect that I am or have a similar mutation. (First dx 35yrs.)  I've had 4 rounds of Taxotere but it became resistant and so chemo was abandoned.  It has barely shrunk.   Feeling very apprehensive about long-term prognosis.  Although I'm still in the early stages, I have found it very difficult to find anyone who has experinced similar. I'm very worried about chemoresistance and surviving TNBC with surgery alone.  (Can't have rad - done that already.)

Any ideas?

Just checking in. Original Dx Nov 2009. Lumpectomy, chemo, rads. Local recurrence in same breast in May 2013  BMX with DIEP flaps and chemo. 

Doing fine-trying to stay off boards and not center my life on breast cancer. Of course, still fearful about recurrence but determined to live my life. Very pleased with DIEP flap. Thoughts and prayers with everyone. 

I don't know if you still follow but I'd love to ask you a couple questions.

ok I am two years out from diagnosis, one year out from ending chemo. Now there is a lump found on the same Breast but after mastectomy, might be fat necrosis or a recurrance....mammo and Ultrasound found it.....now having a tissue biopsy on the 20th....I am scared to death because the ACT treatment has left me in heart failure.....anyone have such a scare and found out it was just fat necrosis

Hey there!!! I am still in the fight as well doing all I can to stay NED. Sending healing vibes to all who are fighting as well. I don't post often either, too much to take in and digest at times

Take care of yourself!

Fighter 34 .... I'm confused. I thought all recurrences with TN were distant.

Hi Cathytoo.

Apparently not - it can be local.

Though my surgeon/onc team did not want to count mine as a recurrence, partly as they weren't sure, and there would have been additional restrictions on my treatments so they deemed it a "new primary".

Wow - it's so long since I've been on here and wow again that so much has changed and how much more I know and don't know.

Turned out my wonderful tumour wasn't quite as chemo-resistant as they thought but not having the extra scan the radiologist had recommended meant stopping chemo early. Having those extra sessions would have been the best treatment option. But it's done now.

I got my second mx after a long fight and a supposedly clear mammogram. *I told them I had lumps*. I did have lots of changes but it had not become malignant - I had cysts and adenomas and benign breast disease - not enough in itself to say it would become another recurrence but I could tell from the surgeons face that I had made the right call. I feel better flat.

I have suffered terribly from a seroma from m y first mx in 2014 - which would not settle and I had 2 further surgeries to try to stop it forming as it was causing terrible rib pain as it was pressurised and I couldn't wear a bra. I ended up with a small hole in my chest for a few months at the beginning of this year but it has finally healed. I still can't really wear a bra as it was causing lymph fluid to build up in my chest and under my other armpit and I really didn't want lymphadema. The surgeon thinks that my previous RT- which would have been a much bigger dose than targeted ones now - probably caused it.

I was unsure how I felt not wearing prosthesis until a usually good breast care nurse said to me on a recent clinic trip "Don't you want to do something about that? You know - for your self-esteem." I was very polite but in my head I was really raging and confused and she suddenly made it all right. I felt she was so wrong to say that. It has nothing to do with my self-esteem. I was so angry that someone would feel like that about me - perhaps wishing I wasn't coming to clinic flat and I just thought - this is wrong - you've just body-shamed me for having cancer and that ain't happening. Flat it is then! The next day I packed up my prosthesis and put them in the bottom of a cupboard. I'll not say never - but I'm not planning on wearing them anytime soon.

But now I'm worried. 6 months of doing everything to get my health back in order and I get so tired and have weird things happening. My tumour markers have risen and are borderline high - I'm expecting them to go up. I've just found that I have some new problem in my esophagus and am waiting on a referral for a GI consultant - though I feel a CT scan would be better. I had a clear bone scan a few months ago but I am getting more spots of pain in my ribs and tightness in my chest.

it's the watching and waiting and having to get every little thing checked. Even the best of friends get tired of this - it's hard on everyone.

Only others who share this journey truly understand.

Hope all those diagnosed with a recurrence are doing well.

Hello Merissa,

I read your post with great interest and I cannot believe all that you have been through. I was wondering how you are feeling now three years on. You have been through such a lot.

I was so sorry to read of the things you had happen after chemotherapy. Lymphoedema often happens in the arm after surgery and patients usually have some kind of lymphatic massage to get rid of it.

Do you know why chemotherapy caused hyperparathyroidism? I ask this because I was diagnosed with TNBC back in 2005 and was diagnosed with hyperparathyroidism at the same time. There is research which thinks there is a connection between hyperparathyroidism and breast cancer, but they do not seem to be sure which one comes first. I was told the hyperparathyroidism came before the breast cancer in my case. Did you have surgery for the hyperparathyroidism?

How are things going now with the carpal tunnel and the fibromyalgia?

I was so sorry to read that three years on you now have a recurrence. Where exactly is the recurrence? How do you feel about this and about having chemotherapy again? How do you feel about having radiotherapy? Did you have any radiotherapy the first time around? What kind of surgery are they proposing?

What chemotherapy drugs did you have the first time?

You say that you are in pain all the time. Is this from the cancer that has returned or is it from the fibromyalgia and/or carpal tunnel?

I noticed this is your first post and that you have only just joined the forum. You are welcome to join the thread I started in 2010, Calling all triple negative breast cancer patients in the UK. There are women on here from all different countries and I am sure you can get some support to see you through all this.

You can also join Calling all TNs where you will also get good support.

Thinking of you and sending you my very best wishes. You have been through a lot and you can get through this. If I can help in any way please let me know.

Fond thoughts.

Sylvia xxxx

Hi Janet, and welcome to Breastcancer.org,

We just wanted to let you know that you've come to the best place for support -- someone will surely be by shortly to offer their advice and support. However, you may also want to start your own thread as this thread pertains to members who are dealing with a recurrence.

We hope this helps and we look forward to hearing more from you soon!

--The Mods