Breast pain and strange lumps?

Karen Wheel · 04-28-2010, 05:58 AM

I have been reading many of you say that you are living active lives (yoga, running, weightlifting) and I still am not up for starting running again (although I really want to as I miss it!) but my right breast is still so sore I can't imagine it?! And I do walk an hour or two a day and do yoga a few times a week but its hard as I am so sore. Also many of you say you had reconstruction and have no problems and I am not sure if I am normal or if maybe I should be more worried....????

My question is --- I had a 1/4 mastectomy (think they took half) and I don't think I'll have any reconstruction if I can help it --- I was a DD cup but now the good breast is down to a D (as I've lost the 30 pounds of Italian - I'm in love weight!) and the smaller is more like a big B ...ugh! However, I don't think many people notice it (even in a bikini) as I live in Sardegna and spend lots of time at the sea and in a bikini.

I am wondering how long I should think it is normal to be sore...? I am still almost as sore as I was about 3 months after surgery??? I think its weird that I'm not getting really any better.

However, there is a spot that they are watching in the same breast. Last month I had my first mammogram and ultrasounds - the doctor there could feel the spot I have been worrying about (my doctors in November when I brought it up said it was nothing as they couldn't find anything). It is low on the ribs and it actually feels like the first lump I found (I found it not the doctors or the mammogram). My oncologists for the therapy which was chemo and lately has been Herceptin, who work under my main oncologist, were poo-pooing my pain and my concerns this last week - saying it was nothing and the doctor on the ultrasound was exaggerating on the report.

So.... I am wondering if this soreness is just healing process (and slow?!) or if I should be taking this more serious? They are doing another ultrasound in 2 months. Also I have a MRI this next week with contrast. I asked about a PET scan (which I have not had one) and they don't think I need a PET as they say my blood markers are ok. However my markers were NEVER high - not even right after having the tumor removed... which of course the oncologists (chemo ones) say that is strange.... Oh, and I am Her2+++ (see signature).

I had surgery in late Feb 2009. Radiation in August. And just finished Herceptin....

Was hoping you had some sage wisdom for me??

I was thinking I read someone say (maybe Jackie?) that they had another lump they found like a year after the first surgery that somehow was missed? I am honestly worried that if that is the case, now that Herceptin is stopped it may start to grow quickly...

I'm doing all the right things with diet and nutrition, so in theory I should be on the mend, but this is bugging me....
Am I being paranoid???
Thank you so much in advance! Karen

Lien · 04-28-2010, 12:33 PM

Hi Karen,
Sorry you need us, but glad you found us. Pain a year after surgery should be taken seriously, I think. Not because it's something serious, but because it's unusual. You had a small tumor and have a good prognosis, but still they need to be vigilant. If you feel you are not taken seriously, could you go to another doctor to get a second opinion? We all worry when we feel/sense/see something unusual, and we all want to be reassured. Poo-pooing is not at all reassuring.

Go find yourself a doc you trust!

Love

Jacqueline

Karen Wheel · 04-28-2010, 02:10 PM

Thanks - but I'm not new... and changing doctors in Italy is well, not easy to do. The doctors who were poo-pooing and saying it was a exaggeration of the ultrasound were the chemo "team" doctors - they just monitor how the chemo and Herceptin are going (the cure as they call it here in Italy) so my main Oncologist is good - and I do trust her - but she didn't think there was anything there back in November when she did an exam... now even the doctor who did the ultrasound could "feel" the spot and spent 30 minutes with me doing mostly the breast that I had surgery on .... she is the one the other doctors are saying is exaggerating. I don't think she was. I think there was enough for her to take 30 minutes to try to see if she could find something on the test. And she wrote it up - sad thing is I don't read that great in Italian, so I'm not sure if it seems good or bad -but it caused a reaction with the chemo squad. :-) And, well, in the defense of the chemo squad --- they don't see me as "sick" .... I look great, I didn't lose my hair because of the low grade chemo I chose and they don't live inside my body or feel the headaches I have been fighting (and lack of any sort of good sleep) from the Herceptin for a year. They see a healthy woman in what they think is a state of exaggeration .... so, after seeing how many of my fellow patients look there at the day hospital .... I can understand why they think I'm a bit crazy (other than the fact I'm American!)... :-)

I'm just curious if others who have had a 1/4 mastectomy or similar size lumpectomy have pain still after a year - and localized pain in one particular area that won't seem to let up --- and have spots that they worry about???

Thanks again --- Karen

whatz · 04-28-2010, 02:21 PM

Karen,
I had a masectomy, not lumpectomy and with reconstruction. My surgery site feels weird (i.e. mix between numb and touchy) but no soreness. Like you I found my own lump and that due to soreness so now I'm always leary if I have "sore" spots on the other side. I had one just recently and had mamo with following ultra sound and was declared fine. I found out later that I have a small cyst on the good side and think the small soreness is related to that. Your spot could be as simple as a cyst but given our history I would want them to make double sure that's all it is. I think the MRI next week should help put your fears to rest.

LoisLane · 04-28-2010, 02:27 PM

Hi Karen. Wanted to say enjoy reading your posts. You are upbeat and positive and proactive with your care as are all the women on this website. As you can see by my history long and involved, I am also stage 1 her2 positive. I ended up having double mastectomies January 2009. you can read why in my original posts but just to let you know I still have pain from the mastectomy on the left and apparently this can be there for quite a while. Also radiation can leave you with pain and aches for years. Aches and pains always scare the hell out of us. Bye the way I also just finished my Herceptin three weeks ago. Carry on with your healthy lifestyle and be well. Best wishes Lois.

Karen Wheel · 04-29-2010, 12:36 AM

Thanks - Hope so! But had an MRI back in November and they only were concerned with a big line on the liver, but they thought after seeing my recent ultrasound of the liver it was an error in the film .... so I stopped worrying about the liver - but the breast (this one spot especially) is sore .... really sore.

And... I even gave up wearing bras for up to like 2 weeks to see if that might be irratating it but it didn't help - still sore. I only wear a bra when I got out to like run errands (1 hour) or dinner ... and I don't think its the bra.

Ok - will see what the MRI says.

:-)

K

Jackie07 · 04-29-2010, 12:44 AM

Karen,

I think the reason why your doctor prefers MRI to PET is that MRI will be focused on the questionable area and a PET is on the whole body. MRI can detect very tiny abnormality while PET is more accurate on growths over a certain size (.5 cm?) MRI can show calcification (dead tumor cells - an indication of possible tumor activity somewhere) while PET can only show things that are 'alive'.

My recurrence was misread as scar tissue (by the radiologists) 4 years straight on mammograms. It was caused by human errors as both the surgical oncologist and the medical oncologist are well-trained physicians from prestigious medical schools and hold multiple certifications. My personal/family cancer history also had caught them off guard. They just couldn't believe I'd be so 'unlucky'.

whatz · 04-29-2010, 05:15 AM

You hang in there Karen. Glad you are having the MRI to get it settled and at that soon, so you are not going to have to continue worrying about it. Apparently my onc also agrees with Jackie07 :-) since she prefers a breast MRI as diagnostic tool. (she wanted me to have one last year already but can't yet due to expander)

Becky · 04-29-2010, 03:44 PM

Dear Karen

I had some hard lumps near my scarline 18 months out from surgery. They seemed to come from nowhere (I had lumpectomy too) and I was seen immediately with a mammo and ultrasound. My breast surgeon who is the best said that it was scar tissue but would biopsy if I wanted. I WANTED and it was scar tissue. That area still bothers me (not the biopsy but the scar tissue). I think it is because it pulls and doesn't have the flexibility or elasticity as normal tissue. Can you insist on a biopsy? I know the EU is different than the USA in that we can insist more than where there is socialized medicine.

Also - pain - all of us are different but it can take 18 months for nerves that were cut to regenerate and that can be weird in that you might have more scar tissue in there than you think and this presses and distorts the nerves. You may also have developed a keloid that you don't even know about. Pain is a beast but it is probably from scar tissue and the way you healed. I would stay on top of it because you just never know.

I am hoping you can get a small biopsy just to put your mind at ease. If not, watch it like a hawk. Don't manually manipulate it too much. Feel it to understand it and have your husband or partner feel it and understand too. Then leave it alone so you don't inflame it and feel it (and have him feel it too) in 2 weeks. I would time it between your menses and do it about 2 weeks after. One thing about a lump is that you just can't leave it alone, eh? I know and you can actually hurt the tissue underneath a blob of scar or something so it swells. So, examine and understand it and then leave it alone for 2 weeks and examine and understand it again. If it is any different - shape, size etc then you have to be a maniac freak.

I also have Daniel Quinlan's book "Beating Cancer with Nutrition" and I am an almost 6 year survivor.

Hugs to you.

PatriceH · 04-29-2010, 06:49 PM

Not sure if this is worthy of note or of any "support", but my surger was last July (lumpectomy). I still have soreness and electrical pains in the affected breast. Just had my first mammogram post all this stuff and there is a spot they are watching. All docs (radiation, onc, family guy) all say this is typical and where we expected to be. I, too, wonder when the heck am I going to get my energy back?! I had been on cymbalta for neuropathy, but asked to wean off that, to see where I was (expensive and sleepy all the time) I've been off a few weeks now and I'm my cranky emotional old self again, but not so tired. I was just thinking this morning, which is the lesser evil: having no energy to live or being difficult to live with? I guess I decided that it's the others that have to live with me, and they'll just have to deal with it. Me, myself, and I get along just fine (I live alone)

.

Hang in there, follow your gut, but from where I stand, healing feels like it will never come, then one day I realize that something isn't there anymore...progress!

Laurel · 04-29-2010, 07:08 PM

Hey Wheelster! Not at all happy to get a chance to pop on the site (tax credit expires tomorrow so maybe I will be able to see you guys more!) and see you are scared and worried over your painful breast. I can tell you my node bx scar under my arm and adjacent to the affected breast remains sore 2 years post surgery. It seems to be irritated by exercise and by my bra. I've cut the side of my bras down and pop those suckers off the minute I enter my house! It seems that the scar tissue is quite tight and harder at the node bx scar. I haven't noticed any changes, but it just never seems to feel particularly comfortable. I think it is as Becky says that there is a pulling and tightening of the tissue present along some scars. Perhaps your stretching and yoga pull on that taunt tissue irritating it. I hope this is one of those many things we have to live with post treatment, nothing more. Please keep us posted!

ElaineM · 04-30-2010, 11:38 AM

Does the area of concern feel deep or are you feeling something that feels like little pebbles or a little pebble in the skin? If you think it is only skin deep perhaps a dermatologist can figure out what it is or do a little biopsy. I would go for the breast MRI in addition to seeing a dermatologist.
I know you always try to take good care of yourself. Keep up the good work.

Karen Wheel · 05-03-2010, 09:31 AM

Becky - thank you - I am hanging out and waiting to see what the scans say this month. Have my body bone scan tomorrow and then MRI the 24th.
But will keep that in mind as your scar tissue is encouraging to me - as I am hoping it is that for me too!
Thanks - Karen

Karen Wheel · 05-03-2010, 09:33 AM

Jackie - thank you for your note - I thought that was you who I read has done it twice. ugh! My docs here say that the MRI has less radiation than the PET and that since they don't "think" I have any more cancer the MRI is what they think is more helpful at this point. So, I will wait --- :-) thank you!

Laurel - yes, nervous - but coping - and not wearing a bra either! ;-) Its weird - but I do sport one when I head out to dinner (rarely) and/or even the grocery store as the bra hides the size difference with the breasts.... oh, well, hoping all is well. I'll keep you all posted.

THANK YOU!!!!!!

Cathya · 05-03-2010, 12:24 PM

Karen;

I had my lumpectomy 5 years ago last November and my left breast is still sore at times but always this side feels different from the other. About a year ago a large lump developed at the top of my left breast. My oncologist requested an ultrasound which came back showing nothing. He then (much to the annoyance of the surgeon) requested a biopsy. He wanted to be absolutely certain there were no cancer cells. This also came back negative. It appears that it is a lump of fat which is not visable as different from other breast cells. He continues to watch it but it is not a concern any longer.

I know I felt so much better having a biopsy and it is always better to be safe than sorry.

best regards,

Cathy

Karen Wheel · 05-03-2010, 12:31 PM

Thanks Cindy - we'll see what my main Oncologist says - I've secured a meeting with her tomorrow when I'm at the hospital for my bone scan .... she may want to do more or have the surgeon who operated on me look at it (she had him look at the lump first before he wanted a biopsy and I have a recent ultrasound that showed the errors) --- I'm sure he remembers me as I'm probably the only American they have had at this hospital since it was built a few years ago... ;-)
We'll see.... Might help to have a few more doctors looking at it....
Karen

schoolteacher · 05-03-2010, 12:37 PM

Karen,

Let us know how things go tomorrow. I have been following your post.

Amelia

Karen Wheel · 05-03-2010, 01:51 PM

Thank you - will do - not sure if they will give me the results from my bone scan tomorrow - but will have some news from my main Oncologist.... She is the Number 2 in Oncology at this teaching hospital.... shes good and a friend, so will let you all know what she has to say. :-) I don't like to bug her every time I go there as she has assigned me to the "chemo" doctors (as I call them). :-)
Karen

Karen Wheel · 05-04-2010, 04:53 AM

Thanks all for your notes back on this...
I met with my main Oncologist this morning when I was waiting to have the bone scan (after my shot) but she thinks that it is nothing.... and explained that the spot (even on the mammogram) doesn't look anything like the last tumor so, I am going to try to forget about it for now and just concentrate on doing the right things.

She said the MRI would not show up something as small as this spot - as the MRI is a total body and head MRI .... so not sure on that as Jackie said something above about a breast MRI - which is not what I'm having.

Again, I have to relax I think and hope that these things just work themselves out.

The bone scan we will have back tomorrow - but I'm heading to the sea (no internet there!) and so hoping my doctor will call me with the news from it and I'll pick up the x-rays when I go back for my MRI on the 24th.

Thanks again - any other comments are more than welcome!!!!!!!!
Karen

StephN · 05-04-2010, 11:31 AM

Dear Karen -

Glad you had a good report.

Finally got back to this thread. Most of us have had these post op aches and pains, as our bodies readjust after surgery. Nerves are knitting where they can and these areas can be real sensitive.

I had inner quadrant lump. and right axilla dissection. From the time my drain was removed from the axilla, I was doing some massage on my scarring areas with vitamin E oil. That seemed to help in easing the tightness.

I also had radiation and there are ongoing changes in the tissues from that as well. To this day, I have twinges in the surgical area from time to time (after almost 10 years), but not outright pain. I found that the area between my breast and collarbone (radiated area) has hardened over the years and I still massage that after every shower if I have a minute.

As for what you can wear for some light support, try those tank tops with a sort of "half bra" for your breasts that have some loose elastic to keep the weight of your breasts from pulling down. I am not as big as you, but I found that wearing a special "sleep bra" during times of discomfort was also helpful. Look on line for that.

I have steered clear of underwire bras for years even prior to my BC. Hope something here helps.