Is it just pain or something more??

gems0506

Hello to all who reads this!

This is my first time to post on this website. I was diagnosed in 2015 on my very 1st mammogram at the age of 41. At the time of my mammogram the radiologist only saw the cancer on the left side in the chest wall. I was told they did not find anything on my right side. I then had a needle core biopsy to confirm there suspicions. Later on I received a call letting me know that it was BC with a high grade. My next step was sentinel lymph node removal (left side) five removed all clear. I made the decision to go with a bilateral mastectomy with nipple sparing and reconstruction. I went with my intuitive feelings that I needed to remove both breasts. I'm glad I did because pathology called to let me know that cancer was also found on the right side and that it was a high grade. I did test positive for estrogen and progesterone and BRCA 2.

Recently I had CT scans for pain that I've been experiencing. PAIN in my lower back, chest L/R also the lower right side of my abdomen. I also want to mention that I will have swelling as well on that side. Here are my concerns... My oncologist calls me back with results while he is driving on the highway and the conversation is going in and out so I have to repeat myself. He tells me they didn't find anything. I said "nothing"?? He then says well the radiologist saw thickening on the left side but think that's probably old stuff.. NO JOKE! I said what about my lower back? I even proceeded to tell him that even my husband can feel a knot. He tells me I could seek pain management and see my general practitioner. My husband is a driver for a gas company and he met a new customer that recently lost her husband to cancer. My husband tells the lady about me. She then asks who I was seeing so my husband tells her. She tells him that her husband also was seeing the same oncologist and that he never saw anything on the scans and they kept telling him something is wrong. I decided to go and get my scans/report. It says in the report that there is thickening on the left side probably due to radiation but I never had any radiation. I also noticed on my scan disk there was no lumbar scan that we discussed. I feel very frustrated! I've gone through several surgeries prior before being diagnosed. I have an appointment to see my OBGYN for my annual check up in July so I'm going to tell her what my concerns are with my oncologist. My OBGYN has also gone through BC hopefully she can direct me to someone else. I no longer feel comfortable in staying with him. I also just started having pain in my left shoulder always the same spot. I feel like I'm too young to be falling apart.. I sometimes feel that I should just except the pain "IF" I knew that it was ONLY pain and nothing else.. My husband and I have 2 sets of twins and YES you read that correctly lol.. 14 months apart! Two 11 year olds and two 12 year olds. I want to make sure I'm around for a long time! I feel like PAIN controls my life right now. Would love to hear feed back on others that are feeling this way..

Meow13

Good luck to you. I think your concerns are valid, I would go to another oncologist

Cpeachymom

gems- I’m glad you’re looking into it further, and I hope you get some answers.

In your report, is there mention of the lumbar scan? That way you know if they even did one and just forgot to transfer the images to the disc. I’m sure if it was done there should be mention of it.

I will say shoulder pain is a common side effect/ complaint after mastectomy. Even without rads. Hopefully that’s all that is.

Is there a way to see your obgyn sooner? If it was me, the waiting until July would be stressing me out! June would be all worry. For peace of mind and someone to listen to your concerns, even if they put you on a cancellation list?

I hope it turns out to be nothing serious, good luck

gems0506

Hello Cpeachymom

Thank you for your response. I did try to get in earlier but unfortunately no openings at this time. I also asked them if they do get a cancellation to please call. There are no mentions of the lumbar scan in report or disk. Thank you for the well wishes much appreciated! I hope all is good for you as well

gems0506

gems0506

Hello Mewo13

Thanks for the good luck 🍀 😊

I’m definitely going to try and find me a new one! Sending you well wishes back your way!

gems0506

pajim

I second the thought that you need a new doctor. Hoping your gynecologist can find you a good one. It sounds like your doc ordered only a chest CT and not an abdominal CT.

Considering that you're having lower back pain and you were in the scanner anyway this makes no sense to me.

KBeee

Definitely get a new oncologist. I did, and it was the best decision I ever made. My former one told me I was at no risk for recurrence, and should ignore lumps. As you can see by my stats, he was wrong, but I dumped him before he had the chance to blow off my concerns even more.

Meow13

I think it is a good idea to consult a different oncologist. Always good to have another opinion.

gems0506

Hi KBeee!

Thank you for responding! I think women are very intuitive when it comes to our bodies! So glad you went with your instincts! Hope you are doing well! I’ve had a rough week with my pain..Tonight is not good either. I’m so ready to see my Obgyn! I feel exhausted from it..

Mewo13

I will definitely be getting a new oncologist! Hope your doing well also

Hodgbc

Years ago I had a Dr tell me that I know my body better than any Dr ever could. Trust your instincts! Also, if you don't like your Dr, then you won't go to them and "let it all hang out". Find a Dr that you like.