Whats your ILC story?
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Texas357-----my mom had ILC many years ago--lumpectomy, radiation, tamoxifen--and is now a survivor of 22 years without a recurrence--so there's definitely long term hope!!!!! I have LCIS, had lumpectomy and just finished my 5 years of tamoxifen, and am on high risk surveillance of mammos alternating every 6 months with MRI and frequent breast exams. My mom's story gives me hope, I hope it will be inspiring to you as well.
Anne
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Does anyone have enlarged lymph nodes on the lymph node dissection side? I have two I can feel under the arm and at least one above the clavicle. We are "watching" them. I would feel better if I knew others had this also.
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Hi Bella, I have just discovered this website and found it great too. I live in Australia and got diagnosed with Invsive lobular cancer in June this year. I though I had caught it early too, but it had spread to 6/21 lymoh nodes. Have just completed my 6 rounds of chemo and am due to have radio in January, but am really scared of side effects, particularly lymphoedema having had so axillary clearance - did you have any problems with that. I am also thinking of having my right breast removed after all this is over and a bilateral reconstruction, but know I will have to wait a while. Will also have to have hormone treatment and am not sure whether to go for Arimidex or Tamoxifen. Any advice you have will be gratefully accepted.
Fran B
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Sue, I don't have the enlarged nodes, but I do understand how waiting causes anxiety to rise. I am glad you are being tested and watched closely. Have the nodes been biopsied? That might give some answers. Hoping for the best for you. Let us know.
frannieann1, Hello and welcome to our ILC group. I didn't have an axilliary clearance, but many here have had it without problem. I had my right breast removed after the dust settled, and I never have regretted it. I'm PR-, too. Since you are postmenopausal, Arimidex might be more effective, at least the studies seem to be showing that. I hope you are recovering from the effects of the chemo. I am glad you found our site and hope you will come back.
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Hi, I am a recently diagnosed ILC. Five weeks ago I discovered an indentation and mass in my right breast. I was visiting the U.S. and as soon as I returned to Costa Rica where we are missionaries, I saw my family physician who sent me for an ultrasound. That doctor said I needed a biopsy. We have the government insurance so the wait is quite long for appointments. We chose to see a private physician and I had a lumpectomy on the left on November 15. I had two tumors, one was IDC and one was ILC. I also have another tumor on the right but it is very small. I am scheduled for a mastectomy on the left and a biopsy on the right December 10th at the government hospital. This should be quite interesting since my spanish is limited and I can not have any with me. My husband will drop me off at six am and can't come back until 4:00pm to visit. I am trying not to think about it and keep busy. We are taking a little trip this weekend and I am totally ready for Christmas. We have a little Costa Rican girl who lives with us and she is really afraid. We are trying to assure her that things will be fine. I am so glad to find this site to vent. Thanks for listening. Kathy
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Sorry need to correct, the side that was recently biopsied was the left. The mastectomy is scheduled for the left and biopsy on the right. Sorry, this is all new to me and I am a bit rattled. Kathy
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In December of 2007. I went to gyn for retracted nipple. He was suspicious of breast cancer and sent me to surgeon for mammogram and ultrasound. Neither showed anything and radiologist said to repeat in 6 months. In six months, neither showed anything but radiologist ordered mri. mri didn't show cancer but was to be repeated in 6 months (Dec 2008). In the meantime, I noticed a palpable mass mid-October. At this time, surgeon decided to remove mass; pathology report showed DCIS, high grade, multifocal. I opted for bilateral mastectomy on Nov. 24, 2008since diagnosis had taken so long. Breast oncologist surgeon called two nights ago and said pathology report showed a big surprise; instead of DCIS, I have infiltrating lobular carcinoma, 4 cm tumor, lymph nodes negative, estrogen, progesterone and her2 positive. I'm just recovering from the shock of the changed diagnosis. I have an appt next week with medical oncologist for further evaluation and treatment plan. BS thinks I will most likely have chemo.
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rayhope, Without a doubt, you win for the sneekiest. What a shock for you. I was struck by the statement that the MRI did not pick it up. I wonder if it was because of its position in your breast, or if the contrast just didn't light it up? Are you going to get an Oncotype DX test? We are here if you think of questions or just want to talk. Negative nodes is good. HUGS.
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your mom gives me hope also
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Thanks, Gitane. I suppose it just didn't light up on the mri. Evidently, about 10% of this type cancer just doesn't show up on any of the diagnostic tests. Even with the inverted nipple, surgeons and radiologists kept saying there was nothing to biopsy. Now I wonder if there should have been some type of biopsy earlier anyway. My only reason for finding out would be to warn other women. I can't really look back; just have to move ahead. I don't know about the oncotype dx yet. I guess I'll find out next Thursday when I meet the medical oncologist.
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I live in South Africa and also had a typical sneaky ILC experience! Had normal(?) mammogram in December 2005, we were planning a holiday in Germany in December 2006 and as I didn't feel like going for a mammogram during the month we were leaving, I thus went for my annual mammogram 2 months before it was due ie after 10 months and with no breast related complaints at all. They performed the mammogram and followed it up with a sonar as usual. On the sonar and on the mammogram a 1cm perfectly formed soft encapsuled round fibro adenoma clearly showed, corresponding in only one way to the 7 positive signs for breast cancer. Against all odds the radiologist however decided to perform a biopsy on this lump but even as the needle passed through the tumour easily and smoothly he felt he had just confirmed the fibro adenoma diagnosis. He said that a breast cancer felt like an unripe pear during biopsy and not like butter! We were all stunned when the results came back which indicated Grade 1 IDC. A lumpectomy was scheduled for 3 days later and the frozen section in theatre confirmed IDC. When the whole tumour was analyzed it showed Grade2 ILC though! Suddenly the whole treatment plan changed as my surgeon who accidently is my employer as well! feels that the follow up on ILC in the other breast is hugely compromised by the fact that in 40% of mammograms a false negative is reported on ILC (as we had firsthandly experienced) and also that ILC tends to be multicentric and to recurr on the other side. Ten days after my lumpectomy a bilateral mastectomy was performed. My lymphnodes were clean and we immediately realised that the ILC had been missed 10 months earlier as a 1cm lump takes longer than 10 months to develop, with hindsight it was clearly visible on the previous tests, again disguised as a fibro adenoma. When the final results came I also had a LCIS in the other breast which didn't show up on any test. I didn't need chemo or radiation and I am on Arimidex now as the tumour was ER+, PR+ and HER neu-. This was really a narrow escape and after 2 years and 2 months of perfect health I am very grateful!
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I started 1 of 4 TC today. They gave me Happy Hour First and I wasn't freightened at all with the infusion. Just wondering why I CAN"T Sleep NOW!!!!!!
I feel fine but I am ready! thanks for all you support. Just reading positive survival stories gives it to me.
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Lory,
I was supposed to start Friday TCH -- there was a scheduling issue... (I am trying to work full time through all this...) they scheduled me for Friday at 8 am -- and could not get me in later... they are light staffed because of the conference...so I rescheduled for next week. sheesh... it reminds me of trying to get the optimal time for a haircut...
I also admit that I have a huge dread factor... and am not convinced that chemo is necessary in my case--
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Sue,
I, too, had swollen lymph nodes when diagnosed with ILC. However, after 3 bouts of chemo, my Oncologost cannot feel the swollen lymph nodes anymore. And the mass has reduced in size. Yeah for me!
Susan
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Hi...I'm 46 years old. Just had bilateral mastectomy, axillary's taken out. DX...ILC, 6.7 cm so far 2 out of 3 nodes positive, waiting for axillary results. Question....my doc wants to do dose dense chemo a/c 4 rounds every other week than t for 4 rounds every other week. Radiation 5x week for 5 weeks....anyone experience this type of chemo? They call is AC/T dense dose....but I keep hearing about TAC, every three weeks....any comments or advice?
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Hi...My mets should show. I have ILC. I had surgery...one breast removed...then did AC/T dense dose...finished it near the end of November. I am just completing radiation..25 of these. I started arimidex about a month ago. I know there is some discussion on the internet sites about how effective chemo is for lobular and what type is best. Your oncologist should give you the best answer to this. I know I was willing to do anything so I may stop recurrence.
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Hi Yvonne,
Welcome to this site and our ILC thread. I hope you are doing well post-surgery. My doctors recommended the same treatment your doctors are recommending only it was before the surgery. They decided against the radiation, though it was a close call. I ended up not having the T and had two more round of AC after my surgery. I had a good response to therapy.
I think the TAC is a bit harder on your system, I'm not sure if AC then T in sequence is better but seems to me I read in several places that it is more effective. Hopefully others who know more about this will chime in.
I hope to hear more from you. This is a rough road, but it helps to share. HUGS.
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I also have a very large tumour - 7.9 cm and it sneaked up on me. I was diagnosed in Nov. 08 and am currently going through neoadjunct chemo.
I would like to know more about your experience and how you are doing.
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I had a mammogram as part of my annual checkup in September 2007. I awaited the results nonchalantly as I usually do. When the report came in and had no findings I filed it away in my medical file. 2008 rolled around and as the year prgressed I realized I was experiencing full-blown menopausal symptoms. The last period I had was in June and around that same time I noticed a thickening area in the top left quadrant of my left breast. I looked on the interenet to see if breast changes was a menopausal symptom and found that it was. Recommendations were basically to monitor and see if the breast changed further. By the fall, it was time to schedule my annual checkup. The thickening in my breast had not really changed that I could tell, but it was still there. I scheduled an appointment with my GP for September, but she was out sick on the day of my appointment so it was rescheduled for early October. At my October appointment, my physician examined me, including my breasts, and was not overly concerened. She normally schedules my mammogram during my annual checkup but our local hospital has downsized and no longer has a radiology department. Instead, the nurse contacted a branch of the hospital 20 miles away to make an appointment for me. They had closed for the day but she promised she would make one the next day.
A week or more passed and I had not heard from my physican so I contacted them. The nurse had dropped the ball and not made my appointment. She said she would right then and called me back shortly with an appointment in early November. I had my first mammogram on November 11, 2008.
I turned 50 and my darling husband took me to Las Vegas for a long weekend to party and celebrate. Upon my return was a letter from the hospital containing my mammogram results. There were suspicious areas on both breasts and another mammogram and ultrasound was recommended. I called the hospital the next day and scheduled a followup mammogram for November 26.
The news came in early December that I needed a surgical consultation for two lesions located in my left breast, exactly where the thickening was. I visisted with my GP again and she made an appointment with a breast surgeon for December 17th. At that visit, he referred me to the imaging center there for more mammos and ultrasounds. I had a core needle biopsy of two lesions in my left breast, one 5 mm and one 1.6 cm. They determined the right breast just had a cyst.
I had to call to get my results which were delayed my the holidays. After leaving three messages on December 30th, I finally got a call back from the nurse at the imaging center. Both lesions in the left breast had come back positive for cancer.
The surgeon's nurse called me the next day. She told me that my options would be a lumptectomy with radiation or a mastectomy. I already had a follow up visit with them scheduled for January 12th, which was good since I was heading to Orlando for a vacation on January 3rd. She said to go on the vacation, not worry about anything, and they would see me on the 12th.
Hubby and I saw the surgeon on the 12th. At that time he informed me that I had the less common type of breast cancer called Invasive Lobular Carcenoma. That type of cancer was harder to detect on mammograms and ultrasounds. Since there were two areas of cancer, and since it is hard to detect if there is more, a mastectomy was recommended. I had already decided on a bilateral mastectomy. I thought about immediate reconstruction for about a week. After researching the different options and weighing the pros and cons I decided to forego reconstruction. My bilateral mastectomy is scheduled for January 28th.
Mary
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For the last 3.5 years I thought I had breast cancer. I also thought perhaps I was crazy for thinking this. I began having dry skin on my nipples, was tired in a way I had not experienced before, and started having drier skin than normal on my arms and legs. Then I began having little pains in my left ovary and my left breast. I went to doctors telling them my concern. Mammography was used and also ultrasound to view the ovaries and cervix and breast tissue. Nothing was found. Last year I mentioned my concerns again to another set of doctors as I had relocated to California from NYC. The OB/GYN did the same type of exam as had been done in NYC, but during the mammography they found calcifications and wanted to do an ultrasound. In the ultrasound they noticed something and a thickening of the tissue. They suggested a stereotactic biopsy on one of the two sets of microcalcifications that were found in the same place where I had experienced pain. The stereotactic biopsy showed that it was benign. The surgical oncologist however suggested having a lumpectomy to remove the calcifications as they may be dangerous in years to come. She mentioned that there was a .0009% chance that any cancer would be found, but it was a safe thing to do. On 1/7/2009 they performed the lumpectomy. The following week I had a consultation with the surgical oncologist and she was in disbelief as ILC was discovered in the surrounding tissue near the calcifications exactly where I had pointed to. I go in for an MRI next week followed by a lymphnode biopsy. I will then find out whether it has spread to other areas. I worry very much about the left ovary as the pain was similar there. I also worry that this cancer is so sneaky and undetectable and marvel how the sequence of steps led to the discovery of it. What they found from the tissue of the lumpectomy was .5 cm in size and they say the margins are clear. I want to go on a big cruise for awhile after all of this is over with, but also fear that my instincts may lead to investigations of the ovary, or that other ILC will be discovered in my body. It is a difficult time mostly because it is very hard to trust one's "gut," but I am very glad that I did.
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Well, after long consideration I decided to have breast reduction surgery at age 50! Little did I know that I had probably made a choice that would save my life! The surgery was 11/13/08. Mammagram 3 weeks earlier was ok. Then pathology reports came in stating that I have LCIS, ALH in both breasts tissue. In the right, 3 foci of ILC .3 cm, .2.cm, .1cm were found, ER/PR+, her2-, margins unknown. This is only the 3rd time in 30 years that something like this has happened to my plastic surgeon.
My local, well-respected onc recommended bi-lat. mast. b/c of the risks, the local rad. onc. thought radiation would do the trick depending on amount of scar tissue. Maybe tamoxifen.
I went to Fayetteville AR to see Dr. Steven Harms (renown breast cancer radiologist) for a breast MRI---a wonderful man who helped develop the Aurora breast MRI. He found no other ILC and very minimal scar tissue, and thought that radiation and tamoxifen could be an option b/c I could be monitered by MRI.
I had a SNB on 1/20/09 and it was negative!
I went to the Kirklin Clinic at UAB for a second opinion Jan. 29. The team there (De Los Santos, Krontiras, Forero) recommended that I have the bi-lateral mast. b/c of the unknown margins of the foci ---- even with radiation. They are not going to recommend tamoxifen unless more ILC is found.
I am going back to the Kirklin Clinic 2/3/09 for a consult with Dr. Jobe Fix about DIEP reconstruction. Sometimes I feel that this is happening to someone else! I have really learned a lot from this board.....thanks to all.
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It was nice to find this thread and read other's experiences and what they have gone through. ILC can be sooo sneaky! I had been called back for magnifications on my mammograms for years due to calcifications. In 1997 I had a biopsy that was benign but since then, every year I worried about what they would find. Last May they found a new cluster in my left breast so I went back for a magnification. When the tech came back in the room followed by the radiologist I knew the news was not good. I met with a breast surgeon who recommended a biopsy. July 1st I had the biopsy, July 7th she called with the news I had IDC in the left breast. Three days later while meeting with her I told her that my initial plans were to have a double mastectomy. As we were talking she was going over my records and decided that she really wanted to biopsy the spot on my right breast that they had questioned the year before. I spent a friday at the hospital going from test to test including the right biopsy. On Tuesday she called with the news that I had ILC in the right breast. Not only did I have ILC but I also had LCIS and all sorts of things going on. She said my right breast was just busy, busy, busy. Without a question she was recommending a mastectomy on my right breast. She told me that the ILC is hard to detect on mammograms and it would have been several years before I would have felt anything. I was actually lucky that they found the IDC in the left breast on the mammogram; it lead to finding the ILC in the right breast.
I had a double mastectomy on July 30 (lymph nodes were all clear) and opted to have reconstruction started immediately. After the surgery, using the surgery pathology reports and an oncotype test done on my tissue, my recurrence chances were low enough that my oncologist said I didn't have to have chemo or radiation. My plastic surgeon used Alloderm as part of my reconstruction and was able to put 250 cc's in at surgery. I was always on the small side so when I came home I was almost as big as before the surgery. Everyone was in awe of how I already looked. I had been dreading how I was going to look after - all I could think of was an old movie I saw where the women was looking in the mirror afterward and had a complete look of horror on her face. I didn't have any horror - just amazement. I had two more inflations and then on November 7 I had my final implant surgery.
I haven't regretted the double mastectomy at all. I was lucky to have found the cancer early and really no problems with the surgery. I am having a capsular contraction with my right implant and will have to have a new implant put in, but I can handle dealing with an implant problem over dealing with cancer any day. Reading and sharing with others on this site is so helpful. I have been blessed to have a big support group, but there are things that only someone who has gone through this can help with. Thanks to all of you for your help.
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I had a mammogram on Oct 28/08 and they told me that if I didn't hear anything by 2 weeks, then everything was clear. Dec 1 I got a phone call from the Dr at the clinic telling me that I need to go in and get a compression and ultra sound done because he thinks there is something there. I had both done a few days later and again he was suspiscious of what he saw on the ultra sound. He sent me back to my GP who referred me to an oncologist. The oncologist couldn't feel anything in my breast and ordered a biopsy to be done. It being so close to Xmas, everything was backlogged and I finally had both an ultrasound guided biopsy and core needle biopsy done on Jan 5/09. It took the Resident who did the biopsies (it's a teaching hospital) 16-17 tries to get 3 or 4 good samples. I got out of there feeling like a pin cushion. A week later which was two days after my 50th birthday the biopsy result came back ILC and LCIS 1.7cm x .2 x .2 ER+. PR+ HER2-, Grade 1-2. The oncologist (surgeon) said that the tumor was very treatable and I have a scheduled surgery date for a lumpectomy and sentinel node biopsy this Tuesday Feb 24/09. He said I would most likely need radiation afterwards. I am so confused at this point and not sure what I should do. I have to admit that my doctor and I didn't have much of a discussion and from reading posts from other women, I'm wondering if I'm being aggressive enough in my treatment of this cancer. I'm worried about it reoccurring in my other breast or elsewhere in my body. Is it normal to go through a lumpectomy and then make a decision to have a mastectomy or bi-lateral mastecomy once I know the results of the lumpectomy? I'm reading that most women don't even go through the lumpectomy and just opt for mastectomy from the start. My doctor never even mentioned this as an option. Am I jumping the gun by maybe thinking mastectomy before I even have the results from the lumpectomy and SNB? I'm also worried as I've read that radiation makes it harder to have reconstructive surgery. Does that mean in effect that I have to make the decision for mastectomy soon after the results of the biopsy are in? I'm feeling pushed for time and all these things going round in my head and a bit of an overload of information at the moment. How will I ever sort all of this out!
Terri
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Terri--I don't have any easy answers, but I can tell you that my mom had ILC many years ago--lumpectomy, radiation and tamoxifen--and is now a survivor of over 22 years without a recurrence. She is my inspiration and I hope can be one to others. I have LCIS, just finished my 5 years of tamoxifen and am doing well with high risk surveillance. Praying you do well with your treatents, whatever you choose.
Anne
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Our stories are so similar!! I had 4 intraductal papillomas removed from my left breast 4 years ago. I always had scar tissue in that area and it was a little hard. In November it felt "different". My husband didn't feel a difference. I had mammograms/us every 6 months for the past 3 years. Last mammo was in February 2008, and I was cleared until this February. Called in December and made an appointment. The radiologist said his gut feeling was that it was cancer, and scheduled me for MRI and biopsy. The MRI was NEGATIVE!!!!! Biopsy showed mixed lobular/ductal.
Surgery December 29th - 3.5 cm lobular. Mastectomy. Initial lymph node biopsy was negative, but then turned out to have 1 positive for micrometasis. Had nodes removed 1-16-09 and 2 were positive. Starting chemo on Thursday the 26th. A/C x 4 for 2 months, avastin clinical study, and then taxol x 1 for 12 weeks.
Seriously considering removing the other breast - still waiting for genetic test results. Even if they are negative, I might still remove the other one so I don't have to worry about this damn thing sneaking up again!!
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I just wanted to share an update with ya'll. I had my skin saving bi-lat. mast. with muscle sparing tram flap recon on March 4 at UAB. Dr. Jobe Fix is my plastic surgeon and Helen Krontiras is my breast surgeon. My surgery went very well, but did last 12 hours. Dr. Fix was able to do the nipples though (about 50% of the time he is able to do this) I opted for DIEP reconstruction initally, but ended up with my second choice b/c I just did not have enough large blood vessels for DIEP. The care I recieved at UAB was exceptional. We still cannot get over it! From the drs., and rn's to the housekeeping staff. I feel very fortunate to have gone there.
Tomorrow will be 4 weeks and I'm doing ok. Only had drains for 1 week! Still sore and tire easily but am walking at least 30 - 45 min per day.
Pathology reports were neg. for any more ILC ---- only more LCIS was found. I won't have to do any radiation or chemo!
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Laura,
Thanks for posting, glad to hear you are recovering well. Keep up the walking, it will help. Fabulous news from the path report!
take care,
Lynn
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Hi Ladies.
I felt a tiny lump like a dried pea, in outer rh breast, during my shower one day in April '94, when I was 48. Went to GP and asked for it to be checked out. He couldn't feel it! In Australia, we have a policy of no free mamms before 50 yrs of age. As we had four teenagers at home then, we could not afford to go to a Dr privately. Youngest son (13) was running away from home too, which was stressfull enough in itself. As my bedroom has two (lockless) doored access and with three boys in house, I always got dressed in the bathroom and the vanity mirror in there was too high to see below my nose. One day in April '95, I forgot to take my undies with me and did a half naked flit to my bedroom and noticed the 'orange peel' effect on my rhs breast. Two days before this, we received in the mail a sample pack of some sort of medical cards with pictures of diseases/conditions and one of them was a picture of a breast with the 'orange peel' look of a cancerous breast!
I rang my GP immediately to make app't asap. He was flabbergasted, if not nearly hysterical. When the nurse/receptionist failed to get immediate app't with X-ray clinic, he yelled at her at the reception desk, "You tell them this woman has a 3 inch lump in her breast and I want this done yesterday!" Well . . . . I nearly collapsed in a heap on the floor . . . . and yet I didn't really accept that I/my body could actually have something like that lurking within. I had my first mammo on the Monday, Tuesday was a holiday so I had to wait til Wednesday for the results. I went out for an hour in the morning, when I came back, DH told me we had to go to the Drs office straight away.
At that time my DH--a ships master--wanted to sell up everything to buy a yacht and sail off, with four teenage kids, into the wide blue yonder. One thing I knew for sure, I am not a masochist. I was resisting this idea with all my might! The Drs surgery was about 100 metres from the local river where there were boats for sale. So, I had my suspicions that that was where we were really heading. Until we drove into the med practice car park--then I got a bit shaky.
The Dr sat at his desk, in a little cubicle type room and, while staring at a gory poster of some nasty rash, told me that I had Breast Cancer and he had made an app't for Friday with a surgeon at the local hospital. I knew then that my life was no longer under my control.
The surgeon did the biopsy that day and I had to wait a week for the results. During this time, I was attending a local adult education college with my daughter, (brain damage from a malignant brain tumour at 10) 3hrs x 3 days a week. She was 18 and very dependant on me and I had to leave her at the college while I went to the hospital, which freaked her out. The surgeon was very short and had to stand on a stool to get enough pressure to stab into my breast to get a sample. I can still hear the crunching sound today, this procedure made. This left me quite upset and shaky but I had to get back to the college, before my daughter started panicking.
Results came back and once again I had to leave DD alone. The test results were undefined so the Dr had to do another bio with a bigger needle. My breast was black and blue from the last effort and I got quite frightened this time because I knew what was coming! Somehow, I got through it and returned to the college but I was feeling quite sick and teary, probably from shock. I got home and had a little nervous break-down in the shower, without DD knowing.
When I went back the third time the surgeon told me that I had BC for sure, but wouldn't know what type it was, until after the mastectomy three weeks later, then I had to wait two more weeks for pathology report. It was ILC! Not that I really knew what that meant for a long time after. I had a modified mx, with 4 x CT, and then 5 years Tamoxifen.
I must say here, I found it much easier dealing with my own dx and treatment than my daughters in '88. At least any decisions I had to make for myself were my choice, but making life and death decisions for a child is a whole other ball game.
Sheila.
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I had gone 5 yrs without a mammo. I was currently in intensive therapy for Rheumatoid Arthritis and couldn't care about anything but my pain. I guess I noticed a puckering in the skin around my nipple but didn't mention it for months.
I finally felt around, under my nipple, found a big lump. Who thinks to feel under the nipple? I had a 5cm infiltrating tumor. I chose mastectomy and chemo. The chemo greatly helped my RA and it was a blessing.
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Lynn12: I have sent you a PM. Your input would be greatly appreciated
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