Normal for changes in reconstructed breast?

Barb A

I had DCIS early 2001. I had a mastectomy w/Tram Flam reconstruction and Tamoxifen for 5 years.

In October 2007, I found a lump in the reconstructed side. I had an aggressive form of IDC but it did not spread to lymph nodes or the chest wall. I had a lumpectomy, chemo and rads, finishing 13 months ago. I have been on Arimidex for 14 months.

The shape of the reconstructed breast is now starting to change and I don't know what's normal lumps, scar tissue or possible problems. The last few months I have had sharp pains in specific areas off and on. Is that healing from rads? My onc doesn't seem concerned, but then again, he doesn't do any additional testing. He has examined anything I point out to him, but isn't worried. My first doctor wasn't worried about anything until I insisted on a mamogram at age 37. If I waited until 40 like he suggested, I would have had real problems.

Is it normal for a reconstructed breast to change shape (buldge in one area only/not near last year's lumpectomy)? Am I overreacting or am I in line if I ask for an MRI or other testing?

Thanks for any advice.

Barb

arbojenn

worrisome
Barb,
Recurrence in a reconstructed breast is rare, I understand. You may have to get really pushy about insisting upon testing. Does the scar look different? What looks like suture scars can be recurrent bc. Have you ever had a PET scan?

Barb A

arbojenn said:

worrisome
Barb,
Recurrence in a reconstructed breast is rare, I understand. You may have to get really pushy about insisting upon testing. Does the scar look different? What looks like suture scars can be recurrent bc. Have you ever had a PET scan?

Thanks for responding
The last PET scan I had was right after my second diagnosis. I had a mammo last October. I asked to have the reconstructed side done also. The radiologist report said "Assumed scar tissue visible". I see my onc every 3 months. He doesn't seem concerned. At the least, I'm going to see if he will do another mammo when I see him the end of July to compare it with the one from October.

Thanks for responding. I appreciate it.

Barb

CR1954

Barb........
Hello Barb and welcome!

I had mastectomy but did not have reconstruction, so I'm sorry, but I don't know much about that.
I finished rads in late February and I did and do have sharp stabbing pains at times. I don't know if that helps to ease your mind, regarding the pains.

I also think that you should be persistent with your docs about another mammogram. It is probably the only way that you will get peace of mind. And we all deserve some peace of mind now and again.

Hugs,

CR

Kristin N

Hi Barb. I can't answer you
Hi Barb. I can't answer you about reconstruction, as, I had a lumpectomy. But, I don't think you are overreacting. I think you should call your doctor and talk to him and get the MRI if it will help you to feel better. Good luck!

seof

Consider new Dr.
I think you should insist that your Doctor should take your concerns seriously. It sounds like you have a history of trouble getting this Dr. to pay attention. I would consider getting a second opinion. I would at least want to know why the Dr. thinks it is not a big deal.

That's my opinion anyway, seof.

arbojenn

seof said:

Consider new Dr.
I think you should insist that your Doctor should take your concerns seriously. It sounds like you have a history of trouble getting this Dr. to pay attention. I would consider getting a second opinion. I would at least want to know why the Dr. thinks it is not a big deal.

That's my opinion anyway, seof.

Barb, I would be concerned that the mammogram would not give the information needed. Did you have an implant put in when you had reconstruction? I can only offer you my experience. I never had the reconstructed side imaged with mammography because it really isn't that effective when you have an implant. Last summer, though, I noticed the scar appeared different and that tiny modules appeared along side of it, and DID appear to be stitches. Then a rash appeared. I do not have much feeling in that side, so I didn't feel any pain until the rash went around to my back where I do still have sensation. The GP thought it was just scar tissue and suggested I see my plastic surgeon. Being ten years out, I had been released from the oncologist and the GP did the follow up as far as blood tests, scans, etc once a year. She wasn't too worried, so I wasn't too worried. Well, I put off seeing my surgeon even though the area now felt "heavy" and was starting to hurt somewhat. Then in March, I got shingles--not relevant to the cancer, but I believe it was heaven's way of intervening so I could get the help I needed to diagnose this cancer early. I went in and asked about the rash which had appeared to have spread onto the flap skin of the reconstruction where it eventually turned into hard lumps that did indeed appear to be scar tissue. The PA I saw was concerned and sent me back to the GP who referred me to a local plastic surgeon. The plastic surgeon said she had never seen such a rash and sent me to a dermatologist who was convinced it was an infection of some type. She took a needle biopsy of two separate areas. Both came back as recurrent breast cancer and all the docs were floored. As it is rare, I think it would really take an experienced eye to suspect it. A third biopsy was done to determine hormone status and thank goodness it was estrogen positive. I was put on Femara which is working beautifully. If this were not a recurrence, I do believe I could get by on the Femara alone! But since it IS a recurrence, I will have to have the reconstructed area excised and radiated. (Due to kidney surgery decades ago, I will have to have skin grafts to cover the area as they cannot stretch the skin to cover the hole.) Then six weeks of radiation. That way, I can maybe zap it out for good.
Long posting, but my point is when something does not occur very often, even the best might overlook it or attribute it to something else. My story is going to have a happy ending but only because Somebody intervened so things would fall into place and my recurrence would be found early. I do not blame anyone--not even myself--for thinking my "spots" were just scar tissue or a rash. Most of the time, that is exactly what it would be. No doctor can know it all. I am just lucky I got Shingles (whoever could imagine that illness could be "lucky!") and the ball got rolling: left up to me, I still would not have contacted my plastic surgeon as he is in the opposite side of the state and I would not have made the effort. (And even though he is one of the best in the business, there is not guarentee even he would have suspected.) Insist that you want to know for sure. I think the best way to tell if you have a recurrence or not is a PET scan, but you have to check with your insurance as that is really expensive.
On a final note, and this is almost spooky: Once I saw that PA, the rash of the shingles remained, but I never felt any more shingle pain at all! And anyone who has had shingles can tell you, that is a miracle unto itself!

Kylez

arbojenn said:

worrisome
Barb,
Recurrence in a reconstructed breast is rare, I understand. You may have to get really pushy about insisting upon testing. Does the scar look different? What looks like suture scars can be recurrent bc. Have you ever had a PET scan?

A recurrence in a
A recurrence in a reconstructed breast, I have only read that on here once before. I wish you the best, and, maybe you should get a second opinion. Good luck to you!

Barb A

arbojenn said:

Barb, I would be concerned that the mammogram would not give the information needed. Did you have an implant put in when you had reconstruction? I can only offer you my experience. I never had the reconstructed side imaged with mammography because it really isn't that effective when you have an implant. Last summer, though, I noticed the scar appeared different and that tiny modules appeared along side of it, and DID appear to be stitches. Then a rash appeared. I do not have much feeling in that side, so I didn't feel any pain until the rash went around to my back where I do still have sensation. The GP thought it was just scar tissue and suggested I see my plastic surgeon. Being ten years out, I had been released from the oncologist and the GP did the follow up as far as blood tests, scans, etc once a year. She wasn't too worried, so I wasn't too worried. Well, I put off seeing my surgeon even though the area now felt "heavy" and was starting to hurt somewhat. Then in March, I got shingles--not relevant to the cancer, but I believe it was heaven's way of intervening so I could get the help I needed to diagnose this cancer early. I went in and asked about the rash which had appeared to have spread onto the flap skin of the reconstruction where it eventually turned into hard lumps that did indeed appear to be scar tissue. The PA I saw was concerned and sent me back to the GP who referred me to a local plastic surgeon. The plastic surgeon said she had never seen such a rash and sent me to a dermatologist who was convinced it was an infection of some type. She took a needle biopsy of two separate areas. Both came back as recurrent breast cancer and all the docs were floored. As it is rare, I think it would really take an experienced eye to suspect it. A third biopsy was done to determine hormone status and thank goodness it was estrogen positive. I was put on Femara which is working beautifully. If this were not a recurrence, I do believe I could get by on the Femara alone! But since it IS a recurrence, I will have to have the reconstructed area excised and radiated. (Due to kidney surgery decades ago, I will have to have skin grafts to cover the area as they cannot stretch the skin to cover the hole.) Then six weeks of radiation. That way, I can maybe zap it out for good.
Long posting, but my point is when something does not occur very often, even the best might overlook it or attribute it to something else. My story is going to have a happy ending but only because Somebody intervened so things would fall into place and my recurrence would be found early. I do not blame anyone--not even myself--for thinking my "spots" were just scar tissue or a rash. Most of the time, that is exactly what it would be. No doctor can know it all. I am just lucky I got Shingles (whoever could imagine that illness could be "lucky!") and the ball got rolling: left up to me, I still would not have contacted my plastic surgeon as he is in the opposite side of the state and I would not have made the effort. (And even though he is one of the best in the business, there is not guarentee even he would have suspected.) Insist that you want to know for sure. I think the best way to tell if you have a recurrence or not is a PET scan, but you have to check with your insurance as that is really expensive.
On a final note, and this is almost spooky: Once I saw that PA, the rash of the shingles remained, but I never felt any more shingle pain at all! And anyone who has had shingles can tell you, that is a miracle unto itself!

Thanks everyone
Thank you everyone for responding. I saw my radiology oncologist yesterday. I told him all this and he just attributed everything to radiation treatments. I will keep track of any changes and report them to my regular onc. I see him in July. I plan to ask for a PET scan. If he won't do that, I'll at least ask for an earlier mammogram (due in October).

I don't have implants, it is reconstructed from the Tram Flap procedure I had done in 2001. If there is a change in the "scar tissue", I will insist they biopsy it to make sure.


Thanks again and best wishes to all of you.

Barb

Noel

Barb A said:

Thanks everyone
Thank you everyone for responding. I saw my radiology oncologist yesterday. I told him all this and he just attributed everything to radiation treatments. I will keep track of any changes and report them to my regular onc. I see him in July. I plan to ask for a PET scan. If he won't do that, I'll at least ask for an earlier mammogram (due in October).

I don't have implants, it is reconstructed from the Tram Flap procedure I had done in 2001. If there is a change in the "scar tissue", I will insist they biopsy it to make sure.


Thanks again and best wishes to all of you.

Barb

Hi Barb! You stay on top of
Hi Barb! You stay on top of this! And, good luck to you! Keep us posted also!