A TN Warning!! Take your TN seriously

donnadd

I would like to post a warning here for all you TN ladies. Last year my TNBC seemed so manageable. A lumpectomy with clean margins, lymph nodes were clear... The chemo and radiation almost seemed unnecessary. They only did it cause I was TN and it wouldn't be good if it came back. That was what they said and that was that.

Well, I was happy and really didn't take the warning of TNBC recurrence seriously (What did I know?). Neither did the doctors who should have!! When the site of the lumpectomy swelled up, they said it's just scar tissue and a saroma - liquid filling the hole that the lumpectomy left - Drain it if you want to. I was glad to hear that. But they knew how serious TNBC recurrence is. They should have biopsied that "scar tissue" and caught the cancer before it metastasized to my lungs!!

Keep a close watch on your TNBC. It's very aggressive and not so treatable if it metastasizes. If I understood the seriousness of TN I would have ran back to the surgeon to take a look after the aspiration of the fluid and pushed for a biopsy.

Auntcoffee

Thank you so much for the warning. I am so sorry you are having to go through this again. I just had my lumpectomy with negative margins and no nodal involvement, and TN by biopsy. About to start chemotherapy but doubting whether it was really necessary to go through that and radiation. No doubt in my mind now. Thank you, again.

ResoluteinAtl

Donnadd,

Thank you for sharing. I'm a triple negative girl, going through chemo right now, the double mastectomy in November. I have a TNB friend who had one breast removed, went through chemo, then had a reoccurrence. Chemo round two for her was AC plus T. She didn't get the "red devil" the first time, and she swears it was her cure. She has been cancer free nearly five years. I see you are getting AC. Hang in there. Even though you feel like crap and pee pink, it's worth it. Prayers for you!

wrenn

I'm so sorry this has happened to you. You must be so frustrated and scared.

I have TN with the subtype metaplastic (which supposedly makes for worse odds) but after failing chemo after one dose and having no treatment I am fine 3 years later.

Although odds for recurrence are higher in the first 3 years for TN it is not guaranteed that you will have a recurrence.

Hopefully oncologists are staying on top of it for all of us TN.

Wishing you well.

ScotBird

Donna I hope you don't mind me asking but how soon after your lumpectomy did you notice there was a lump at the site of the old scar? I had a lumpectomy 2 months ago and it still feels as though there is a lump there. I was assuming that this was due to the healing process but maybe not. How long do you think I should wait to get this checked?

Meow13

My doctors are super conservative here in Seattle everything gets biopsied. I'm not TN but pr negative with high oncodx. Sorry that happened to you and thanks for the warning.

donnadd

ScotBird - I didn't feel an actual lump (everything was removed) but my scar was really big and didn't seem to be getting any smaller. The onc said it was fine but I didn't think so. She was young and not very experienced. She had a Senior Dr helping to set my chemo/radiation schedule.It didn't bother me how young she was since I really thought I was an easy case - lumpectomy with clean edges. I figured I was getting the experience of that Sr doctor through her. But I didn't realize that she was on her own when the check-ups came. About 3 months after all my treatments were done I mentioned a pain in my back to her since my neighbor's mother had been having terrible back pains till they realized that they were being caused by breast cancer. She kind of laughed like she never heard of such a thing. Well I have those pains now too. They're cause by either the breast cancer or the lung met.

The real mess up was the surgeon (not mine - I switched hospitals right after the lumpectomy for treatment). Six months after I finished chemo/radiation I went to him for a check-up and he just said - It's a saroma, drain it. He had never personally seen my lumpectomy scar. It was big and swollen. Why didn't he ask to see it again after the draining? (he told me to come back in 6 months!).

Scotbird, are you receiving chemo and radiation now after the lumpectomy? I had it all - Received CMF. Now my onc (new one, but same hospital) says, obviously the CMF didn't work for me. They really can't check right away except I guess a biopsy, but since I didn't have any sort of lump or tumor to see if the chemo is working they assumed it was and the big lump was just messy scar tissue (remember, I had the lumpectomy done at a "competing" hospital).

I have no idea when is too soon, but when do you go for a check-up? If you're uncomfortable with the answer be pushy. I was always too happy to hear good answers and never questioned.

ScotBird

Donna thanks so much for the explanation and I'm so sorry about your experience. It's really kind of you to take the time to describe all of your symptoms to help others. I will see my MO next week and the oncologist the week after that and I will make very sure that they examine me properly and check everything thoroughly. I am currently having radiotherapy, and have had chemo and LX in recent months. I was told that I had had a PCR but I now have back and leg pain and leg weakness and the LX scar feels as though there is a new lump there. It may be just my paranoia but your advice to get everything checked and double checked at an early stage is well taken. I will definitely do that. Thanks again and I'm sending you love and hope that your symptoms are under control and that you are getting the treatment you need and that it works well for you. X

Meow0369

Thankyou for sharing I'm triple neg and a friend of mine is too she had lumpectomy few yrs ago and complains of swelling and pain at her site. Her onco said its fine I keep telling her to go to another dr. But hasn't she may be scared or denial.

Redporchlady

I also have swelling and pain in the scar tissue area where I had a lumpectomy and it has been a 1 1/2 since surgery and a PCR. Since I am TN they plan on doing a breast MRI every other year. I just had mine and everything is good.

LovesLoons

Can you explain why exactly it is really serious when it recurs? Is it because we can't get the hormone treatment? Or does it spread to places that are harder to resect? Or what?

Meow0369

Lovesloons, I believe it's bc TN is aggressive and higher rate of reoccurrence.Someone can correct me if I'm wrong. We don't hve the hormone option either but responds well to chemo. All forms of BC that can spread are monyiored if caught in blood work.

Meow13

There is one good thing, like cancer has anything good, after 5 years NED the risk continues to go down every year that goes by. For hormone positive cancer it doesn't appear to go down as much it may even increase.

LovesLoons

Thanks:)

5_6_5_6_1_

hi ladies....I'm in S.A. I hardly ever know of tn sufferers except for one person whom my oncologist introduced me to. I'm so glad to have found this forum. I'm going out of my mind here.in December 2015I had a mastectomy rt breast...then in jan I felt a lump and burning sensation in left breast.my oncologist made it look like I'm paranoid....anyway I didn't let it rest till he okayed a mammoth and ultrasound for the left....they found that I wasn't imagining....the point I was talking about 12 o clock,had an echo and they even happened to find an echo at 5 o clock...my Dr assured me though that it's nothing to worry about especially since I was undergoing chemo which will destroy anything. He did say it could be milk sediments that dried up. So I went with his professional opinion. He promised to review the echo a few months later......so last month 7 September an ultrasound was done as promised. The report said 12 o clock echo was gone....5 o'clock echo was significantly reduced to almost non existent....however I was still worried that the chemo reduced whatever it was and that it might grow as chemo is over. Of recent I'm having nightmarish burning sensation in that breast. My Dr thinks I'm just bee paranoid about recurrence bcos I talk about it so often. Imwhat now thinking of seeing a different oncologist for peace of mind.

octogirl

56561....welcome to these forums and I am sorry you have to be here. Disclaimer: I am not TN and don't know much about it. That said, it sounds like your lump or lumps in left breast have reduced significantly following chemo; if that is the case, that actually is an indication that it could in fact be bc (since it responded to chemo). I definitely think you should go with your instinct and get a second opinion, for peace of mind if no other reason. Keep us posted.

Meow0369

Hi 56561, for sure get a second opinion!! Listen to your body. Symptoms are alarm bells going off. It took me 3 yrs to get ( like a strong intuition ) tested for the Braca 1 test since my mom has it and BC twice. By the time the dr gave me the test I had 2 IDC tumors w unseen dcis in other side. Who knows where I'd be if I hadn't push the test which prompted monitoring. We have to speak up we are not nuts or paranoid. What would they do if they were us? That's what I ask them. They are not so judgment mental. My friend has TN she had chemo to shrink her tumor but test showed it did not kill all the cells so and did more and radiation. By the way my area was itchy.

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