Sclerosing Adenosis - very difficult to diagnose

olivetree

Hi everyone,

I'm writing to share a close family members recent experience as this forum helped me a lot over the past two months when I have been worrying and researching constantly. I told myself that if we received good news I would share it on here and not be one of those people that disappears suddenly.

My family member discovered a 1.6cm lump in her breast one day, which was palpable. The doctors reassured her that it was probably nothing but she was scheduled to have an ultrasound just in case (she is very young so a mammogram would not have been very effective.) The results of that came back as concerning due to the shape/surface area of the lump, which promoted them to do a core needle biopsy. The results from that came back as normal. What concerned the doctors at that point was that the findings from the ultrasound and biopsy were discordant, so they scheduled her in for an excisional biopsy where they removed the lump and surrounding tissue.

Four pathologists then failed to diagnose what the lump was, saying that it was suspicious but that they could not rule out/confirm cancer. Eventually an expert pathologist diagnosed the cells as being sclerosing adenosis, uncommon in women her age and very difficult to diagnose due the extreme similarity between it and cancer cells under a microscope. We feel incredibly grateful and lucky. She is scheduled to have a breast MRI in a few months to check the scar tissue after her operation.

I wanted to share our story and hope that it might bring peace to someone who is in a similar situation - at every stage of diagnosis it seemed as though it was going to be the news we had feared most, but this was largely due to the long process/difficulty in diagnosing her benign condition.

Thanks for reading and I hope this helps.

XXXXXX

alicki

HI,

I suppose it dépends on the pathologist. I had am expert breast pathologist and he got it right first time.

True there are some similarities but i highly recommend getting an experienced breast pathologist to do the job.

Good luck!

Alicki

Moderators

Dear olive tree, Thank you for sharing this story. I know that the community appreciates your taking the time to tell everyone of the good news. We are wishing you and your family member all the best. The Mods

donitadoll

thanks for Shar

Ddw79

That's such good news Olivetree and very happy for you and yours.

I too had/ have that condition along with several other not yet cancer problems that they found on Mammogram. I think they do need to do an excisional biopsy to confirm this DX. In my case after the excisional biopsy they confirmed right away x2 that they found both ADH and Sclerosing Adenosis which I think does leave us at somewhat higher risk for breast cancer. Especially true in my case with confirmed AD

MelissaDallas

This thread is a year old and this was her only post

Ddw79

no news is good news. I bet she would have gotten back here if this turned into something worse . I'm going to think positively about this

MelissaDallas

She was posting about research she did for one of her family members, not herself. I've also not read anything about sclerosing adenosis being particularly difficult for a pathologist to identify. I sure don't understand why it took four or five of them since it is a very common "aging breasts" finding. It can look radiologically similar to cancer though. That's what triggered my biopsy

RuxiBul

I have been in a slightly similar situation a couple of years ago when I was 33. A highly suspicious for malignancy lump was found in my left breast. I have seen 3 different doctors, all told me the same thing: “This is most likely cancer! I'm so sorry for you, you're so young!"It took some days in between running to different doctors who all did ultrasounds and one mammogram ( I did not want to repeat the mammogram). I cried rivers of tears in matters of days and was unable to function. I saw all my ultrasound reports and whatever was in my breast had spiculations, was taller than wide, has posterior enhancement, high Tsukuba score. Every feature pointed towards malignancy and none towards benign. Due to the position of this lump (close to pectoralis muscle), I was advised to go for excisional biopsy which I did. I had a ultrasound guided wire insertion (I was so terrified I had breast cancer that no physical pain was evident - I cannot recall if the insertion of that wire in my breast was painful). I went straight to the OR and nearly died of post-op complications.Through God's grace I was spared and the doctors stabilized me. The wait was long and during those 3 weeks, I lived as if I had cancer. I cried and prayed every day. When I got the call it felt like a dream: “It is good, it's not cancer!" I asked the doctor to repeat the news a few times. It was sclerosing adenosis. They also did immunohistochemistry tests to make sure it was sclerosing adenosis. In the lumpectomy site I developed an oil cyst due to fat necrosis resulted from sx. Today I live with fear and I go for check-ups every 6 months. I have developed a very specific health anxiety related to BC since my last scare

RuxiBul

I have been in a slightly similar situation a couple of years ago when I was 33. A highly suspicious for malignancy lump was found in my left breast. I have seen 3 different doctors, all told me the same thing: "This is most likely cancer! I'm so sorry for you, you're so young!"It took some days in between running to different doctors who all did ultrasounds and one mammogram ( I did not want to repeat the mammogram). I cried rivers of tears in matters of days and was unable to function. I saw all my ultrasound reports and whatever was in my breast had spiculations, was taller than wide, has posterior enhancement, high Tsukuba score. Every feature pointed towards malignancy and none towards benign. Due to the position of this lump (close to pectoralis muscle), I was advised to go for excisional biopsy which I did. I had a ultrasound guided wire insertion (I was so terrified I had breast cancer that no physical pain was evident - I cannot recall if the insertion of that wire in my breast was painful). I went straight to the OR and nearly died of post-op complications.Through God's grace I was spared and the doctors stabilized me. The wait was long and during those 3 weeks, I lived as if I had cancer. I cried and prayed every day. When I got the call it felt like a dream: "It is good, it's not cancer!" I asked the doctor to repeat the news a few times. It was sclerosing adenosis. They also did immunohistochemistry tests to make sure it was sclerosing adenosis. In the lumpectomy site I developed an oil cyst due to fat necrosis resulted from sx. Today I live with fear and I go for check-ups every 6 months. I have developed a very specific health anxiety related to BC since my last scare.

I think doctors need to learn to communicate very gently and to not make pre-diagnoses based on imaging alone when something is very suspicious. There are a few benign breast conditions that mimick malignancy and there are breast cancers who look benign on imaging. Until a biopsy nothing is definitive and even a biopsy is not 100% guarantee. While I think most doctors are right most of the time, there are instances in which looking at images will not tell the entire story. Had my doctors told me:"This looks concerning, but we cannot say it's cancer until biopsy is done!", I would have had some hope. When you hear:"I'm sorry, this is 95% cancer!" that is all you focus on. The 95% not the 5%.

Sclerosing adenosis, although it is considered a benign breast disease, it increases the risk of breast cancer slightly. There is conflicting evidence. In some studies it was found to increase the risk, while in others it wasn't. I'll go with the fact that since there is evidence to support this claim, I will consider it's true and my risk is increased. I did not have atypia in my report, but whether sclerosing adenosis is found with atipia or not does not seem to matter. It increases the risk and that's all there is to me. I actually did an entire paper on this for my Anatomy & Physiology course, that's how much I wanted to know my risks. I am not happy that I had sclerosing adenosis, but I am happy it wasn't cancer. I have zero family history. Actually no one in either side of family had any breast/ovarian issues. I am very “special" this way. Because no family history I do not qualify for any prophylactic surgery, even though I can afford and I am willing to pay. In Canada I cannot see a breast surgeon just because I have fibrocystic breasts and all kinds of weird lumps. In a way I wish I lived in US. It seems like there is some fluidity in the system and women see gynecologists and breast specialists. I cannot see a gynecologist unless I have something going on. There isn't such thing as I want to go for a check-up to make sure I'm fine.